Posts Tagged With: MS

Dream Italia – August 19

30 years ago this month, I was diagnosed with Multiple Sclerosis. Based on the symptoms I’d had over the years and the amount of scar tissue/plaques on my brain, my Neurologist estimated that more than likely I had it for about 10 years already. It has been a wild, unpredictable, crazy roller coaster ride.

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Categories: Italy, Italy Updates | Tags: , , , | 6 Comments

A More Recent Account of Events

Updates

May, 2003 –

In March, after being on Copaxone for just shy of 1 year, I had another attack. A rather mild one this time. I was hospitalized for 4 days of IV therapy, and was able to return to work a week later. Is the mildness the result of the Copaxone? We’d like to think so, as that is its purpose. However there really is no way to know for sure. I was hospitalized from the start. The last 2 attacks, we did at home IV therapy, and I ended up in the hospital anyway. I’d like to think it was the combination of the Copaxone and hospitalization as it is a much more controlled environment. Remission lasted about a year and a half.

An interesting sidebar: the day after I got home from the hospital, I got a call from the company that distributes Copaxone. They check in periodically to see how you’re doing. When I told the guy what had happened, this was our brief conversation:
“Did you miss one of your injections?”. “No I did not.”. “Have you ever missed any?”. “No I have not.”. “Well you have a good day now, thank you, good bye.” Interesting huh? When I had all the trouble with Betaseron, that drug company didn’t want to hear any of it either. Not from me, or my doctor. In other words, they really don’t want to know when a drug isn’t doing what it’s supposed to. Makes me wonder even more, how accurate are their statistics in their research? Hmm…. makes me think, not very.

June, 2003-

I have put the bike away for good. I didn’t ride it at all last year. I’ve not totally given in and sold it-yet. I have found something I can do to stay connected with theatre. I am the Web Mistress for TownSquare Players. Actually I got this job last year which entailed designing the site from scratch, then getting it done within 2-1/2 months. Over the last year, it has taken off quite well, which means my having a lot more work to do on a regular basis, in order to keep it current.

I’m on the SARA Committee. “Storage And Rehearsal Area”-which is a building that TSP and WMTC rent and use jointly. I work out there when I am able. My area is props, getting them organized, and eventually, creating a database of everything that we have. Then maintaining that database with each production. Of course, I go see each production and partake in any parties like any good theatre person/Thrustre would! 

Last fall, friends of mine started a Theatre Arts company, Dream Makers Studio and I have since taken over and re-designed their website. Another paid gig that is very exciting!

September, 2003 –

In July I made the hard decision to sell my bike. I’ve known for quite some time that I would never ride again. However, my stubborn streak kept me from making that final step.

My cognitive function has been deteriorating for a while now. At this point it has got me rather upset not to mention afraid. Stairs have become a real obstacle now. There are a lot of times that I am afraid when I’m going down. It is so very confusing to me, most especially as I mentioned, if I have anything in my hands. I find myself more and more, getting utterly frustrated when I am presented with something as simple as picking up more than one thing. I am becoming more absent minded than I was before. I am having difficulty communicating even on the simplest level. I am having a harder time finding the right words as well as the context of the words. I find myself being quieter when I’m in a group of people. At work I have said some pretty dumb things to customers and boy is that embarrassing! I still “cover” these moments, by making a joke of it. I wonder how long that will work?

Because of this rapid progression, I also find myself depressed more and more. I get very frustrated. I get very angry. I get very frightened. I think to myself, “I’m 45 years old. What will I be like in 10 years?” I don’t even want to think about it. Sometimes I think back to that time of 1987 and how devastating that was. I am not in that bad of shape, but in many ways it could become, and is, very similar. Let’s face it that was over 13 years ago, there have been many attacks over the years and I’m older now. I don’t know as I have the same emotional strength not to mention physical ability, to go through something like that again. Then, I was very involved in theatre and couldn’t wait to get back to it. I don’t have that to look forward to anymore, that extra drive to push me, that goal to reach. I had a much more active life then and things to do. Ok, so this sounds melodramatic huh? But it’s how I feel and honesty is still an important part of my life, and my story.

I still have my friends that I know will push me and encourage me if such a thing should happen. I still have the websites to take care of for TownSquare Players and Dream Makers Studios. I still have SARA to attend to when I can. Is that enough? I don’t know, I really don’t. Motorcycling is obviously out of the picture and that too is a very depressing realization. I just don’t feel that I am much of an example anymore for living with MS. I’m still too stubborn to completely give up when things get bad or when I’ve had attacks the past several years. I do know, I don’t go at things with the same tenacity I used to. I get depressed much more easily now. I don’t push myself anymore. That could be my downfall. I can’t help but think about my doctor telling me how my activity level was a big part of my recovery. Hmm… what activity level now?

These are things that weigh heavily on my mind all the time. Especially on a bad day when I balk at going down the stairs, stomp my feet like a child out of frustration when trying to accomplish a simple thing like picking up my briefcase and a letter off the counter, or on nice summer days when I pass a motorcycle.

I still don’t feel sorry for myself, I’m getting more irritable and tired of it all. From outward appearances, people are still amazed to find out I have MS as I don’t have any obvious handicap. As has always been the case, this is a blessing, yet at the same time, a point of contention. It is harder, or so it seems, for anyone to completely understand why I’m not doing the things I used to. That proverbial “But you look so good.” comment. Maybe I should tell them to turn off the light, or simply close my eyes, and let them watch me fall over? Tell them to put a small piece of paper on the floor, tell me I have to walk in a straight line and step over it without breaking my stride? I’m so tired of trying to “convince” people that there is a problem, simply because it isn’t readily seen. Stop doubting me. Don’t be like my brain; if you don’t see it, it doesn’t exist, or I will start showing, rather than telling, what happens in given situations. Wow. A bit of anger here ya’ think? Unfortunately yes. A frustrated anger.

I don’t try as hard and I find myself much more afraid with each attack, than I ever was before. I used to just get mad. I still do, but there is much more fear involved now. It seems that each attack occurs in much the same area of the brain and I can’t help but wonder, just how much more can it take? How many more ways can it find to do things? Seeing how much more difficult everything is than it was just a year ago makes me very anxious. Maybe I should read the things I’ve written in the previous several pages? Maybe I’d realize that I can still accomplish a lot? Maybe I’d realize that I am a stronger person than I’m feeling right now? Maybe. Time will tell. I hope I can get in touch with that part of me again.

I’ll continue to talk to anyone about MS. I’ll continue to tell people that you can’t give up. I’ll continue to tell people to be as active as they can be. I only hope that I can be a somewhat positive example.

July, 2004 – Breaking news

Is it a miracle? Am I cured? It sure seems like it. It was the most incredible thing. I was driving home from work and, well I just felt clear headed. Everything just seemed so damn clear. I can’t really explain the feeling. I wasn’t the least bit confused while driving. My first thought? I can ride my bike! That nite, I went into Woodstock for a birthday party at the Stage Left Cafe’. Normally at a particular intersection in town, I have trouble. There are some small trees close to the stop sign. I know they are there. I know the stop sign is there. I know this. However, each time I get to that intersection, when I see the trees, my brain doesn’t readily recognize the stop sign because it focuses on the trees for some reason. Each time, I slam on the brakes once it finally does recognize that stop sign. Tonite? I stopped just like anyone else stops. Trees? Stop sign? Yeah, so? No biggie. I kind of grunted a ‘huh’ and continued to the Cafe’.

Now normally, I have a hell of a time remembering people’s names. It takes a few seconds or minutes for me to get the names. Normally I have a problem having conversations for any length of time, and having fluid conversations where I’m not searching for words, or saying the wrong things. Not tonite. Everything was a breeze. I didn’t stay very late. The whole time I kept thinking, ‘What is going on? This is so great – but what’s happening?’

I didn’t say anything to anyone about it. I think I was in shock, or maybe I didn’t want to jinx it. The next morning in the shower – I closed my eyes and for whatever reason, did NOT put my hand out to steady myself. I was fine. I kept opening my eyes, closing my eyes over and over just to be sure. No problem standing. I finally continued with my shower anxious to get out and try some other things. I walked heel/toe. I walked a totally straight line. I never waived, lost my balance, nothing! I stood with my feet together; eyes closed and was steady as a rock. Ok, here’s the big test. I walked on my heels all the way down the hall. OH MY GOD!!!! These are things that I have never been able to do since the MS. This was amazing. This was incredible. This was a miracle. I don’t care what anyone says, that’s what it is. I knew I still had MS that it just didn’t go away, but ya know what? I am just going to enjoy the hell out of whatever this is for now.

That day I began telling people. I was so excited it was hard not to. I told my mom a few days later. I wanted it to last a little while before getting her and dad’s hopes up. She was very excited as well. The next step is to contact the Doc. He’s going to go nuts!

I saw him the following week. I didn’t even give him a chance to ask me to do things. I was like a little kid. As soon as he walked in the room I was like, “Look! Look at what I can do!” He just shook his head and said that were he a drinking man, he’d be out at the bars that nite. He did order an MRI to see what was going on. We both joked that it was going to come back “clean” the MS was gone. If only.

The following week I had an MRI and here’s the really odd thing. I’d had one done exactly 1 month prior to this one. There was nothing new. This MRI? There WAS another plaque. What? How can there be a plaque and I’m better than I’ve ever been? It didn’t make sense to me. None of this made sense to me. How was I able to do things that I’d never been able to do? How did my cognitive function take a complete turn around?

This is how he explained it to me: The new plaque was in an area of the brain that has more to do with personality – or as he jokingly said, ‘If you start acting crazy or something, we’ll know why.’ I asked why the sudden change and he said that it doesn’t happen very often but there are times when a person goes into what they refer to as a very deep remission. Not that I’m cured, but nothing is aggravated and things actually will function quite well. How long will it last? No way to know. What caused it? His best guess is that I am on Zocor, which they have found to help people with MS, which is why he put me on it in the first place. One of the side effects is that it acts much like an interferon that cost thousands of dollars. The Copaxone, Beteseron and Avonox. EXCELLENT I say. And it will also help reduce my cholesterol – what more could I ask for?!?

I did drag the bike out since I’d not sold it yet. Since the poor thing had sat for so long, it didn’t want to start. I bought a new battery, Doug from work came out one nite and installed new spark plugs for me, but it still wasn’t staying started. He said the carbs needed to be dealt with – they varnish in time. Since it wouldn’t run, I had to have it towed. Once I got it back I took it for a spin. It was great. I didn’t have any problems. Wow. How awesome is all of this???? I waited a few weeks before getting a new sticker for the plate; just to be sure things were still good.

2005 to 2007

Things continued to remain very stable. I began taking vacations and continue to do so. This year I am going back to New York City over Memorial Day. I am hoping that Sandy will join me in Boston in October. I am debating about going to Bar Harbor this year. It has just gotten so expensive just to get there – my airfare this year will be over $100.00 more than last year. Not to mention the cost of The Inn-which I love and wouldn’t stay anywhere else anyway. It’s only April, so I have some time to think about it and decide.

I rode my bike to work a few times in 2004 and 2005. I was never quite sure of it after getting it back from the repair. It didn’t seem to run the same way it used to. I also had to have some other work done to it as well-routine things had it been ridden all that time. Near the end of the season in 2006, I got the wild notion to get a new bike. Mine was 10 years old now, though it only had 5,000 miles on it and I was somewhat afraid to ride it because of the way it felt. I returned to the Yamaha dealer in Woodstock that I’d bought a bike from before and purchased a new Yamaha V-Star Classic 1100cc. It’s gorgeous! It is also huge. Almost 10″ longer than my old bike and over 100 pounds heavier, it weighs about 700 pounds with everything I have on it that are extras. However it sits much lower so it doesn’t feel that heavy. It is the style bike I have always wanted – full fenders, floor boards, heel-toe shifter – which has taken a little getting used to. As I bought it so late in the year, I didn’t get many miles on it before I had to put it away for the winter. My first order of business this year is to take it in for its required 500 mile tune-up. I’m looking forward to a new riding season.

2007 – 2014

As time goes by, things are not quite as good as they were a few years ago. I traded in my bike in July of 2011 and did not replace it. I had not been riding much in 2009 and I knew it was again time to make that hard decision. Many things have been happening with my body, some are MS related, and some are just getting older I suppose. I began having more and more trouble with the Cognitive issues again while riding the bike, as well as, my balance was getting worse as was my leg strength – all of which are pretty important on a motorcycle! I was able to use my bike as a trade in on my new vehicle, so that’s what I did in 2011.

I seemed to be having an awful hard time of raising my legs for a few years now, it was worse if I was carrying , anything regardless if it weighed 5 pounds or 50 pounds, it made it that much harder to lift my leg up a step. As this got worse, I started to go up and down the stairs, one step at a time. More often than not while going up, I was bent over leaning on the steps as I went up. This was in part because of pain – my knees are in pretty bad shape, the grinding that goes on makes me sick to my stomach. It has gotten to the point that I can only lift my left leg about 2” off the ground. If I “throw” my leg to pick it up, it immediately drops to the ground. I can’t hold it up. My right leg I can still lift, and hold it for a few seconds off the ground, it is just very ‘heavy’. I will not carry anything up or down the stairs unless I can hold it in one hand. I have to be able to hold on to the railing or wall with the other. There are times when I will hesitate before going up or down because I’m trying to figure out just how to do it. There is nothing natural, normal or rote about using stairs anymore. It is quite the challenge.

I am very unstable on my feet – I lose my balance a LOT. So long as I’m near something, I can catch myself, however I have fallen quite a bit while outside. I broke my left ankle on Valentines Day of 2012 because I rolled it 3 times trying to catch myself from falling – I still went down to the ground landing on my knees. This ankle has healed properly and there will be no surgery. I broke my right ankle the same way, in 2010. It required reconstructive surgery. While on vacation in San Francisco in 2012 I fell 3 times, hurting mostly my pride, although there was a lot of blood when I did a face plant at Coit Tower. My knee was pretty banged up and bloody as well.

I am very mindful while walking anywhere that is unfamiliar, and especially so on any stairs. I seem to not only be unsteady when I’m someplace new, but also a bit confused. I can only assume that I am requiring so much concentration on where I’m stepping that it might just be too much for the brain to process quickly? I always seem to feel a little “off” when I’m someplace new because of this. That includes a store or wherever I happen to be. I cannot look around while I’m walking, I have to be looking at the ground – always. It’s a must. I will say that this keeps me from some adventures on vacation in that I won’t go off the beaten path like near a shore line. I won’t even attempt to try to walk somewhere that isn’t paved, or at the very least a smooth path. This year, (2012) in San Diego I was at Mount Soledad and would have loved to go down the path and explore the shoreline, but there was just no way that I could. It was quite steep and very rugged.

2 years ago while in Ventura, CA I made the mistake of going down to the water’s edge at a point that meant stepping down via a pile of large rocks/boulders with small foot paths in the middle of the piles that had been made by people walking this path over time. I took 2 steps and just stopped cold. I’d forgotten that something that simple was in no way simple. Not anymore. I was so completely confused as to where to put my foot to go any further. This is very hard to explain……if there is anything in my path while walking, it will confuse me, it can be the size of pebble, but it is still something I have to ‘factor in to my steps’ before I get to said obstacle. Because I have to always be looking at the ground, I am also looking a bit ahead to see what’s coming – when I see there is a curb coming, or there is something as simple as a small stone, I can’t just keep walking and deal with it when I get to it. I have to start thinking about how I’m going to step around it? Can I step on it? Do I need to stop to go around? What do I need to do? All my brain knows is there is an obstacle and it is difficult to process that obstacle. So there I stood on this pile of boulders wondering how in the world I was going to get back to “land”. While I was standing there a little girl came bounding down and clamored over the rocks to get around me. I was mortified as I sat down on a rock and turned myself around, then stood up. Now that I was at least facing the right direction, I still had trouble figuring out how to move and where to put my feet! Eventually I picked my way back to the sand. It seemed like a monumental task when in actuality it was no more than a few steps. UGH!

I will not go into my driving. I am afraid someone will turn me in and take away my licence! There are times that I know I should not be behind the wheel, unfortunately, it isn’t until I’m in the car, on my way to or from someplace so I don’t have much choice other than to continue on.

I can no longer lift my left leg any more than about 2-3” off the ground. Now any kind of an incline is a challenge – the amount of the incline determines what I need to do. Swing the leg slightly out? Swing it back and throw it? Or just take very small steps. Same thing with a step or a curb. If I am tired, then I swing my leg back and up and use the momentum to lift it up each step. I also, kind of sway at the waist, using my body’s momentum to help. This year (2013) while on vacation I ended up doing this way more that I would have liked. If I am sitting down, I can’t lift my leg at all. I use my hand to pick up my leg, or again, I can swing it up and grab it with my hand.

My overall strength is becoming less rather quickly. Problems with not being able to focus on anything if I turn my head is much worse. I’m told it is because the left and right hemisphere of the brain are not syncing because of the amount of scar tissue at the point that takes care of that. So my eyes are not tracking correctly.

Every day is a challenge, physically and mentally. Some days are harder than others. I get frustrated and angry a lot more often these days. I’m still working 5 days a week, full time. I have to so I have money to go on vacation- LOL!

Just take it day by day…… as I am all too familiar with the fact that it could be a lot worse and everything can change in the blink of an eye. Just do it as Nike says in their commercials. I cannot give up.

Perseverance, tolerance, strength, patience and adaptation……..

Categories: Multiple Sclerosis | Tags: , | Leave a comment

Adapting To A New Way of Life

ADAPTING TO A NEW WAY OF LIFE

I learned that the brain is an amazing organ. I don’t think there is anyone who does, or can understand it completely. However, just as a child learns to do things, I too had to learn how to do things that I’d been doing since I was a child.
To this day, almost 16 years later, I still have to do most everything in a way that is not “normal”. ADAPTATION – KEY WORD. It has become a daily routine over the past 4 years now. The adaptation is something I’m very aware of having to do. Once I’ve adapted, it becomes unconscious for the most part. I have learned how to pay attention to the tension of my muscles in my arm, hand and/or fingers for example. By doing so, I know how much pressure is needed to pick up a glass as opposed to a cotton ball. My brain has learned how to do this so that I use the right amount of pressure so as not to crush and/or drop what I’m holding. Although, if I hold anything for any length of time, like the steering wheel, I am crushing it because my had clenches very tightly. Same with holding a pen, it is very difficult to hold for very long. I have learned to concentrate on holding something so that I don’t just let go of it without wanting to. I say a “mantra” in my head when I walk much as I did in those early days in the hospital when trying to reach for something. “Left foot, right foot, straight, walk, left foot, right foot, turn etc… I must always be looking at the ground in order to walk at all. There are times when walking that my left arm will want to curl into my body, my arms don’t sway naturally when I walk, they pretty much just hang because again, my brain still doesn’t know that they are there I guess.
The reason for the mantra and looking at the ground is due to Parietal Indifference. It is the inability of the brain to recognize that which it cannot see. As well as that which it is not currently using. Sounds strange huh? It is believe me. I don’t recognize that I’m standing-other than I know I’m upright. Because I (my brain) doesn’t know there is ground unless it sees it. This concept carries through to most tasks. Some require little effort, some require much more. Walking and stairs are the most difficult. Going down stairs being the hardest. I’m sure because it also requires more coordination. At times when I’ve picked something up, I may have to think about what to do with it. I know it all sounds strange. All of this happens, in a split second for the most part. As I said, the brain is an amazing organ!
I still am not always able to just reach for something unless I look at it first even if I know exactly where it is. I may have to think about what to do with it once I’ve gotten it. I have to be able to see stairs in order to go up or down them. Changing direction while walking or even turning my head will throw me off balance. If someone comes up to hug me, and I am not ready for it, this can throw me off balance.
Walking is not a natural thing anymore. It takes concentration. I have to be conscious of what I’m doing in order to walk straight, not fall over or stumble. Mostly it is unconscious. But there are times when it is not and it does require me to actively be doing that “mantra”. I cannot run at all or walk quickly anymore. It is too hard to keep the legs knowing what they are doing so that I don’t trip and fall.
If my eyes are closed, I have no idea where any part of my body is or what position it’s in. Again, I can’t see it, so the brain has no concept of it existing. If I move it, I’ll know where it is, otherwise not. There are times if I’m not using my arm, that it will hang limp or want to lay against my body – again – it’s not being used, the brain doesn’t know it’s there and ignores it. All it takes, once I notice, is to move it.
My left wrist still curls under to some extent and my hand becomes misshapen at times when I’m not using it. The fine motor movements in my hands and fingers will never be normal. Working with anything small is very difficult. I can no longer “write”. I print. I can only do so for a short period of time. Anything small that I try to hold for any length of time becomes a problem. My hand will still want to crush it, or I will drop it if I don’t concentrate. Sometimes this is true when holding larger things as well. My sense of balance is very bad. I cannot stand on one foot. I cannot walk toe-to-toe in a straight line without looking as though I’m drunk and almost falling over. With my eyes closed, it is even harder to maintain my balance.
I have very little feeling in any part of my body. This too is hard to explain. It is a light sensory touch thing more than no feeling at all. If you stick me with a sharp object, yeah, I’ll feel it. There are times when I may cut myself and don’t know it until I see the blood. It takes awhile for the sensation to be realized by the brain. Because of this I am able to touch very hot things before I realize they are hot. Sometimes good, sometimes not. That’s how I’ve gotten 3rd degree burns before! My hands are probably the least sensitive part of my body.
I tire very easily as do all MS patients due to a decreased amount of energy. Because the brain is working overtime to accomplish each task, fatigue is a big factor. The amount of energy that is spent to do anything is much more than the average person. Obviously, the more severe the damage is the more energy that is required to accomplish a task. There are times when simply getting up from a chair takes quite a bit of coaxing and thought to be able to do it.
My energy level is probably a little more than half of the average person when I’m feeling good. Although, because I’m very obstinate and bull-headed, you’d be amazed at what I can do with that amount of energy.
Many times people will say, “Rae, what did you do? Why are you limping?” Well, to MS patients, we know we are not limping. What we are doing is actually throwing our leg. Because the foot “drops”, you have to use a throwing motion to bring the leg forward in order to lift your foot enough to get it off the ground. This happens anytime that I get tired, sick, worn down or hot.

WHAT DOES THIS ALL MEAN?

This is all permanent damage to my CNS and spinal cord. There are times it gets worse. There are times when I must think about every little move. There are things I cannot do anymore, and never will be able to. If I get tired, get a cold, when it’s hot & humid, or during an attack, any or all of these symptoms can flare up and become problematic. Being around any kind of infection is a dangerous thing. Because as I said in the introductory page, the immune system is affected. A common cold will be much harder for me to get over and will also take a whole lot more out of me than it does others. Anything that compromises the immune system, can and will, make any old symptoms flare up.
My memory has gotten very bad. My attention span and concentration level are very short. I cannot do too many things at once or I get confused. I cannot think of what I want to say a lot of the time. I have trouble using the right word(s), and what I say comes out as garbage or the wrong meaning because I use the wrong word. Sometimes what I want to say and what I do say, are two entirely different things. I know this ahead of time which accounts for some of the hesitation and stumbling. I know I don’t know where the information is in my head. It’s like having a hard drive with a whole lot of bad sectors on it! You know the information is there, you just can’t get to it.
Many people say, “Oh, I forget all the time too. I stumble over words too.” This is a MOST infuriating thing to hear. Something else you learn with MS is that you begin to know what is the MS and what is not. Obviously I know everyone forgets, everyone stutters from time to time, this is natural. It is virtually impossible to explain what it is that is going on in my head during these times. To know what you are trying to say and for the life of you, you cannot begin to attempt to. So you don’t. You say something else. Or you say nothing at all. The information is there, it’s just a matter of when the old computer will retrieve that information. It may be in a few minutes, it may be in a few weeks! Or it may be never. No matter how I try to explain this to someone, I get, “Oh that happens to everyone.” and there is NOTHING more infuriating let me tell you. Because it isn’t that simple.
You may notice these things, look at me funny, and figure out what it is that I meant to say. Because we all do this from time to time. But were you to spend an entire day with me, you would notice the frequency in which it occurs. It is much more apparent when I have to talk about something that requires using the correct words and/or thoughts. Such as at work, or were I actually telling you all that I am here. This is when the hesitation and/or complete blank, or “nonsense” can come out of my mouth. I have learned to make a joke out of it, to laugh it off. Inside, I am not laughing. I imagine it is quite similar to what people with Alzheimers experience. It is frightening as I imagine I am only 43, what will happen as I get older?
Recent studies have shown that Cognitive Dysfunction is a very real part of MS. This is what I have been experiencing more and move over the last few years. It is also what causes much of the above. At least it’s got a name now. Makes me feel a little better. There was a time when I began thinking I was becoming a hypochondriac with all of the symptoms I was experiencing. I was tested again last year, and found to have the most trouble with Cognitive Dysfunction. I was also diagnosed with ADOCD (Attention Deficit Obsessive Compulsive Disorder) 11 years ago. The AD is the more predominant of the two. All of this adds up sometimes creating a little havoc.

HOW THIS ALL AFFECTS MY LIFE

The Cognitive Dysfunction and AD are perhaps the hardest to “live with”. To forget what you’re saying or doing while you are doing it is very frustrating. As I said, knowing something, but for the life of you, you simply cannot retrieve the information at will. It is the consistency of if that is so frustrating. It isn’t a once in a while thing. It is all the time. This is what people don’t understand. This is also what tells me that it isn’t the “normal” thing that people experience. There is nothing worse than being asked a question that you really should know, like the name of your doctor? And you draw a complete blank. Mundane kinds of questions like this that go unanswered make you feel rather stupid at times. Also very frustrating and maddening. If I go to see a new doctor, many times I have to bring notes just so that I can remember names, my insurance company name, medical history etc.. Again, things you would just normally know.
Driving? There are times that I forget “how to” drive or that I am driving. No, I’m not talking about the “gee, how did I get here? I don’t remember driving this far.” kind of thing. I mean literally forgetting how to drive, the skills that it takes. The Cognitive Dysfuntion, along with the other damage to the brain, causes me to see something, but not react to it immediately. It is then, that I have to literally tell myself to move my foot, brake, turn the wheel, whatever the case may be. Makes you want to drive with me huh? Fortunately, the time frame is very quick. I realize it within a second or two. There have been times when it has been close however. Something else at the back of my mind – how much longer will I be able to drive? The other fortunate thing is, it isn’t all the time at this point. Some days are worse than others, while some days I am fine. It all depends on how I’m feeling, if I’m having an attack it becomes more of a problem. If I have something on my mind, the AD then adds to it making it that much harder because my mind wanders way too much. In reality, what I have discovered is, I am almost constantly instructing my brain if you will, what to do, when to do it and how to do it, all day, everyday. I’m not really aware that I am doing this-again, these things become unconscious. The hard part is, this constant instructing, can at times, cause my brain to just shut down. It is too much information for it to take in at once – it goes on overload. This is what is usually happening in driving situations. Again, thankfully, this is not all the time while driving. I have learned to not allow myself to think about other things as much as possible.
This is not true for every MS patient either. These are things that are part of “me”. I use techniques to remember things like association. No it doesn’t always work, I forget what the association meant! Probably one of the most frustrating things for me at this point is my memory and concentration level – or lack thereof. I’m noticing it more and more, and yes, with age it will get worse. I hate the fact that someone can be talking to me and I’m not even listening. Not because I don’t care or don’t want to, I simply can’t. My mind is somewhere else. I am thinking about many different things all at the same time, but not with any cohesiveness. I don’t have control over it. To know that it is happening and having to fight to listen is more frustrating than I can tell you. I have to force myself to pay attention, and more often than not, I am not successful. Trying to force it, actually makes it more difficult at times.
This also affects my ability to learn new things. I think my interest in designing web sites, in computers and how they work, is a big help. These things force me to constantly learn new things, recall what I have learned thus keeping my mind in an exercised state.

BUT YOU LOOK FINE RAE.. I DON’T GET IT

Much of the lingering damage is NOT something that people can “see”. I’ve explained enough of it to you by now. This is another reason why for some, it is very hard to believe I have MS or have been through what I have. No one but me knows what is going on in my head. You can’t see me saying my mantras to myself. I have gotten very good at looking as though I’m listening when I’m not. You don’t know that what I’ve just said isn’t what I intended to say – unless it’s so obvious by a word I use. You don’t know that I’m struggling to remember something as simple as your name. You can’t see the confusion in my brain when I’m trying to do something with my hands, or trying to piece something together. For the most part, all of my symptoms are not outward ones. Of course I’m thankful for this. I have been able to “overcome” many of the physical difficulties or work around them. I’m not having a whole lot of success with the memory etc.. and it only seems to be getting worse.
The things that I have learned to compensate for, are, as I said, for the most part, unconscious. As I get older, and boy how I hate to admit that, it does become a little harder. It requires more effort more frequently. More things have to become conscious. Each attack I’ve had since the one in 87′ has taken me a little longer to get over. It leaves “a little more behind”. In the spring of 1998, I had a very similar attack to the one in 1987. My doctor said it was just as serious. As far as I was concerned it wasn’t. Nothing ever will be. But neurologically, it was. Yes, I was not in good shape for awhile. But no where near what I was back in 87. I was able to care for myself. So to me, it didn’t seem that extreme. However, it did take quite a few months to get through it. With each subsequent attack, it gets a little harder to get over and bounce back. It begins to take its toll.
The important things are I am able to walk. I am able to take care of myself. I’m able to work in the theatre. I’m able to ride a motorcycle – which I taught myself after having been though all of this. I’m able to go on long trips alone on my bike or by driving. I can use a computer to write (good thing since writing is another passion!). I am able to use power tools. I am a photographer. I hold down a full time job.
Yes, there are days when I have to cut back. There are days I cannot do what I want to do. Summer is a hard time for me to be very active because of the heat and humidity. There are days, weeks or months, that I know I cannot take the chance of riding my motorcycle. I cannot put in the hours or do everything I used to be able to in theatre. I cannot do anything that requires the use of my hands, quickly. Operating some of the controls on my camera is difficult because they are small. Most things require more time to do them than they did before. There are many days that each step I take is a struggle to lift the legs because they are so “heavy” or I am so exhausted. This exhaustion doesn’t necessarily come as a result of doing anything in particular either. It just is.

Learn where things are at today – Read ‘MS Journal’

Categories: Multiple Sclerosis | Tags: , | Leave a comment

The Big One

March, 1987

This particular attack started around 1:00 in the afternoon while I was at work. I was fine one minute and got up from the table after lunch and had quite a bit of trouble walking. By 3:00 that afternoon, I could no longer lift either leg, I could only drag them. I began to lose the coordination of my arms, legs and hands as well as the fine motor movements. My arms were bent and curled in towards my body, both wrists were bent down at 90 degree angles, my hands were clenched into fists, and the only place I was not numb was the right side of my face. Within 2 hours this happened! Yes, it got worse by the next day. You want to talk about frightening!
While having MRI’s done that evening, I was strapped down more so than normal because my arms, hands, fingers and legs were moving involuntarily. One of the scans was of the brain stem which is a very sensitive scan. The slightest movement will cause the scan to be blurred. So much so that you are not even allowed to swallow during this scan! I was told not to swallow for 13 minutes (the length of this scan). That’s a long time! Of course, as soon as they say, “Okay, we’re going to start, don’t swallow or move.” what is the first thing you have to do?!? I didn’t swallow. They did however have to do the scan over because they said I did move, so they strapped me down some more!
I was hospitalized the next morning and put on my friend the IV. This IV would stay with me for the next 3-1/2 weeks while in the hospital. The longest I have ever had to be on IV medication.
I had now lost all the coordination and fine motor movements in all of my limbs. Consequently all of the movements that I made were very erratic and spastic – most especially with my arms and hands. My hands were either in a very tight fist or in the form of a claw all of the time. My left wrist was now curled downwards at more than a 90 degree angle – it almost touched the underside of my wrist. Both arms were curled and misshapen even more than the day before. I was unable to keep them from “holding” themselves against my body. The only way for me to open my right hand was by force. I was able to lay my arm on my leg and force the hand to open to some degree. Upon doing so, the fingers would move uncontrollably – so much so that I began to refer to them as “spider fingers”. With much effort I was able to bring my wrist up to it’s normal position for very short periods of time by using this method of force.

I BECOME HELPLESS –

AND IT’S ONLY THE BEGINNING
It was at that time and over the next day(s), that I began to realize just how serious this was. With each test I was given, I realized what else I was no longer able to do. Each simple, everyday task I tried to perform became what seemed to be an insurmountable obstacle. I was about as close to being in a vegetative state as you could be, without actually being so. Every minute of every day became a hurdle, a challenge, and a defeat. I could no longer function on my own.
My left side was/is always affected much worse during an attack. I was unable to bring this wrist to a normal position on my own at all. Forcing it wasn’t possible. Someone else would have to move it which would cause quite a bit of pain. A plaster splint was made and formed from my forearm to my fingertips. This kept the wrist bent at only a slight angle and my hand at a slight curve with the fingers held in place with straps. This was so that the tendons and muscles did not shorten permanently over time. My left hand was now rendered useless by the splint. (As if it wasn’t already!)
It was impossible for me to pick up anything with my right hand. If I was able to open up my fingers enough to grab something, my hand would immediately return to a fist and crush whatever was in it. On the other rare occasion that I was able to grab something with my fingers, they would immediately release, thus I would drop whatever I had grabbed. Suffice it to say that I really had no use of either of my hands at this point. There was very little I was able to accomplish on my own, or with a great deal of difficulty and time, as I will explain later.
The strength of my arms and hands were tested the first day in the hospital. My left side was less than half of what is normal. The right was slightly above half. Another iron thrown in the fire. My legs were found to be at about 3/4 of their strength with the left being slightly less. My walk was more a shuffling of my feet because I really couldn’t lift either leg. I could stand, but a “gait belt” was put around me when I was in therapy. I was held on to while I walked, so that I wouldn’t fall over. I was put into a box during occupational therapy that comes up past your waist and is somewhat tight. This is to prevent you from falling, when performing “tasks”. Being an extremely independent person, the gait belt and “the box” infuriated me to no end. I would get enraged with being put in “the box”. Being forced to use a wheelchair much of the time was another indignity. I would yell, complain and get very nasty every time these indignation’s were forced on me. Again, humiliation and defeat.

WHAT CAUSED THIS? WHAT DOES IT MEAN?

All of this was caused by a plaque that was about the size of a pinhead at the basal ganglia in the brain stem. As it was explained to me, the basal ganglia is like the central switchboard of the brain. All of the impulses and messages are routed through this area. Consequently all of the instructions if you will, were being stopped at this point. This also caused an inability for my brain to recognize any part of my body unless I looked at it.
Let me try to explain… If I had an itch I could not just reach out and scratch it. I had to look at the area that was itching, then look at my arm, then look at the area and keep doing this until I was able to reach the area of the itch. I was guiding my brain with my eyes to recognize what it no longer was able to. This was true for every movement that I made throughout the day. The lack of coordination, fine motor movement and use of my hands only complicated matters. If I couldn’t see it? It didn’t exist as far as my brain was concerned. One of the tests was for me to close my eyes. They would manipulate my hands, fingers, arms and legs and ask me what position they were in, were my fingers pointing up or down etc. I had absolutely no idea.

I REBEL AND REFUSE TO ACCEPT MY CONDITION

I can remember trying to answer the phone while sitting in bed. The beside table was always right up against the bed with the phone on the edge of the table. Everything was placed as close to me as possible. I would go through this “mantra” as I called it, of looking back and forth for all of my movements that I explained above. Once I was able to reach the phone I would force at least 2 of my fingers open enough to grab the receiver. Then as quickly as possible, throw it, flick it, toss it, whatever, onto my lap. Of course there were times I was not successful in these things. If I was, I then had to work very hard at sliding the receiver up to my ear with my arm, hoping that the person was still on the line. I then held the phone in place by turning my head and wedging the receiver between my ear and the pillow. I would have to call a nurse to hang the phone back up for me. I was used to doing most everything for myself while in the hospital as I said. I rarely called for a nurse. I’d do it myself, or walk out to the nurses’ station to ask for soemthing. I was beginning to have to ask for more help than I was used to.
Naturally, along with all of the physical problems to overcome, the emotional problems soon followed. It was demoralizing to me. I hated every minute of it. I rebelled to no end. I was the worst patient ever. I was sarcastic, rude, nasty and uncooperative. I fought with anyone who tried to help me. I didn’t need anyone’s help and no, I was NOT going to stay this way. It was going to “go away”. I wanted to be left alone. I wouldn’t allow anyone other than my parents and my best friend to even visit me in the hospital for over a week. I didn’t want anyone to see me this way. I was frightened. I was embarrassed. I never knew such humiliation as I did during this time. Such utter devastation and frustration was something I’d never experienced before.
My Occupational Therapist put an old shirt on me one day and told me to button it. I scoffed at her and in a very snotty tone, asked why she would want me to do something so stupid. Guess what? I was not able to button that stupid button. (True, I only had one hand to do it with) However, I had NO idea how to do it. Yup, that’s right. I no longer knew how to do much of what I learned as a child. I knew on an intellectual level, but was not able to figure out how to do it physically. I was much like a child learning everything for the first time.
I couldn’t visualize, understand, nor make my body accomplish most things. I couldn’t write because I couldn’t hold a pencil. I couldn’t bounce a large ball. I couldn’t figure out how to put simple pieces together to make something. I couldn’t place a peg into a pegboard. I couldn’t drink unless a straw was put in the glass and the glass held for me. (I don’t wear hospital gowns, I wear sweats and tee shirts.) Getting dressed was a huge chore. I had to put things on the bed, or floor, and try to get my arm or leg into the openings. Then with my right hand, in a fist of course, inch whatever piece of clothing on by sliding it with that fist. It took forever! To eat, a bed table was put 2 inches below my chin. Special silverware was made with huge plaster handles so I could grab them in my one fist. Most food ended up on the floor long before it got to my mouth. Eating, which I love to do, was an exhausting chore. When you have no coordination, your limbs flail all over. They shake. They jerk. These are just a few of the mundane things one does every day that had now become if not impossible, near to it.
I had been a competitive athlete since 6th grade. I’d always said I never wanted to lose my legs. Well, I changed that tune real quick after this. I had NO idea just how many times a day, and how many things, you do with your hands. Until they were gone that is. It seemed as though all day long, all I did was find out some other simple thing I could no longer do. Trying to blow my nose. Ha! Most did not make it into the kleenex. I had 1 “hand” to do everything with and it was a fist. Now, imagine trying to blow your nose. Imagine going to the bathroom. Imagine doing most anything. Go ahead. Make a fist. Now with that fist, “grab” the kleenex, “grab” the piece of toilet paper. Now, try doing what you’re supposed to do with them. Can’t do it huh? Nor could I. And there was no way that I was about to have someone wipe either of those things for me! Try going about your normal activities for just 10 minutes like this and you’ll get an idea of what I mean about just how much you use your hands and fingers.

I START TO LEARN A FEW THINGS

This brings me to another important point(s). I was embarrassed and humiliated but at the same time, what bothered me more than anything, was seeing what my condition did to those who cared about me. That was perhaps one of the hardest things to deal with. It still is to this day. I said I don’t now nor never have, wanted people to feel sorry for me. I also don’t want to cause people to hurt because of me. I understand that when you care about someone it is very hard to see them in a state such as I was in. Stress plays a big part in MS, it can cause symptoms to flare up. Seeing what it did to my parents crushed me. I knew that as parents, it was even harder for them to see me in this condition. It is hard to explain. It’s the reason I wouldn’t let people come and visit me for over a week. When I finally did, sure enough, the look on their faces said it all. They held it together, but as they were leaving, I could see them walking down the hall from my room, and see that they were crying. This was just as devastating to me as everything else. I didn’t want pity. I didn’t want to make people upset. It was easier just to tell people not to come. If I could have, I wouldn’t have let my parents come. It was very hard to see what it was doing to them.
My best friend was able to act like there was nothing wrong and treat me like “me”. I was so thankful for this. I mention this because when I do have attacks that cause some of these same things to re-occur, I am getting better at seeing people and not being embarrassed or humiliated anymore. I don’t want people to be upset. Which is probably asking way too much. But if it’s possible, don’t show it. Having been in this state, has taught me to no longer look at someone who is in a wheelchair or has any type of physical problem like they are “different”. This is one of the things that I learned through all of this. To be stared at, to be looked at with pity, to feel like you are felt sorry for, is not a pleasant thing. It is human nature to look when we see someone who is “different”. I no longer do that. Because of this I have a whole different understanding of what it’s like to “be different”.
Another thing that really bothers me, and is also hard to explain why, is when someone comes up to me and says, “Rae, you look so good.” I have gotten so that I hate that phrase. I think, “How am I supposed to look?” Are you expecting to see a cripple? Are you expecting me to be in a wheelchair? Are you expecting me to look any other way than I normally do?” Why? And don’t expect that! I know, it doesn’t make sense. It is hard to explain what I mean and why this is true. At the same time, if I do look “different”, I don’t expect you to ignore it in the sense that you won’t ask. It doesn’t bother me to have anyone ask what is going on. I’ll tell you. I don’t hide from it. Just don’t expect me to look different, but do accept it when I do.
I came home from the hospital with several little goodies that help in doing tasks that we all take for granted. A special tool to button a button with. I got to take home my special silverware. I got a special cutting board that has spikes in it to hold whatever you are going to cut so that you don’t have to hold it. The knife that they gave me is actually quite cool. It looks almost like a dagger, and you use a rocking motion to cut things with it rather than the typical sawing motion. They have all kinds of things as aids.

I GIVE UP – AND MY TURN-AROUND

With each thing I attempted I got angrier and angrier. I got more and more frustrated. I became more and more depressed. Until one day I simply gave up. I’d had it. I was done fighting. I was done trying. I was tired of no matter what I tried to do for myself, I couldn’t do it. I told myself there was no way I could go through life like this. Just let me die God, please. This is no way to live.
I got back from a therapy session, told them to close the door, turn out the lights, close the curtains and leave me alone. This was after a little more than a week in the hospital. I laid in bed in the pitch dark and I cried. For the first time since being diagnosed I cried. For the first time I felt sorry for myself. Why me? I laid there in bed and decided I wasn’t going to do anymore stupid therapy or anything else. If this was the way it was going to be, so be it. Leave me alone.
A strange, yet wonderful thing happened then. Someone brought in a plant and a card and set it on the bedside table and left without saying a word. I looked at it with disdain and hate. I hated everyone and everything at that point. Later, for some reason, I decided to read the card. It took quite some doing to even get it open. It was from my “theatre family”. I was about to start work on a show when this all started. It was a huge card, signed by everyone in the show. Words of encouragement, words of love, friendship and telling me how if anyone could do it, I could. That they needed me and missed me. Well, it was a turning point for me. I cried some more. And then, well I was kind of like “Rocky” from that point on. I was going to beat this thing. I was going to get better. Never mind what any doctors or therapists were telling me. There was that small chance that I could regain some function. And damn it, I WOULD!

THE OBSTINATE, STUBBORN, STRONG-WILLED,
BULL-HEADED RAE COMES BACK

I turned on a light, and shuffled over to a table where my friend had brought me some things for therapy. Legos, those huge crayolas they use in pre-school, one of those tablets with the really wide lines they use in pre-school and one of those huge pencils. I started with the Legos. I worked for 4 hours undisturbed by anyone because my door was still closed, on building a 3″ square block. I DID IT!!!!!!!!!!!! I opened my door and called out to the nurses, “Look! Look what I did!” They came and hugged me and we all cried. True, a little block is no big deal to the average person, but to me, at that point, I’d just built the Taj Mahal!
I should explain too, that since I was in and out of the hospital so many times, I knew most of the nurses and staff very well. We had become friends actually. Nurses would come to my room when they had a break to visit, watch TV or just talk. We would have “parties” in my room when I was there. (isn’t that a surprise to those of you who do know me!) So they knew what an achievement my building this block was. What a turn around it was for me to even attempt to try to do it. Which was why I got the reaction I did to my “masterpiece”.
With that under my belt I attempted printing my name. Just the “Rae”. It took quite a bit of doing, and looked like a 3 year old had printed it, I took up several of those large lines, but again, I DID IT! The next day my regular nurse, my “team nurse”, came in. Yes, I had a team of 7 people “taking care of me”. Nurses, therapists, my doctor, psychologist, minister, the Head of Therapy and Rehabilitation and the person in charge of placing you somewhere when you leave the hospital. I showed my nurse my block and my name and we hugged and cried some more. I think my doctor was on the verge of tears as well when he saw a picture I colored for him from a kids coloring book-yup, I went out of the lines!
As I said, it wasn’t just the physical problems; I no longer knew how to do anything. The concentration and effort it took to print “Rae” was tremendous. I was and would continue, to learn how to do everything all over again much like a child. And not just learn. There was more to it than that. I had to teach my brain how to do things in a way it was not programmed to do. There were many things that I would learn over the next 4-1/2 months.
That’s how long it took for me to be almost symptom free by outward appearances. I was not able to go back to work or drive for a month after getting out of the hospital. I did go through a period of about 2 months of very strange seizure type things. They would last for a few minutes and make my arm jerk pretty violently and was actually quite painful. A “short circuiting” of sorts within my spinal cord. Because of where this plaque was, the amount of havoc it was creating was tremendous. There were no impulses from the brain that simply went where they were supposed to go. They just stopped at the brain stem. So re-training was in order. The brain has this capability already. It does it with every attack or any other trauma. It does so with such precision and is so instantaneous, we don’t even realize it. Truly truly amazing. But in my case, there simply was not the capability for the brain to do it on it’s own.

To continue, Read ‘Adapting To A New Way of Life’

Categories: Multiple Sclerosis | Tags: , | Leave a comment

In the beginning

I was diagnosed with Multiple Sclerosis on August 27, 1986. I was 27 years old at the time and an extremely active person. At the time I was very involved in 2 Community Theatre groups doing just about everything I could. There were many weeks of going to my full-time job, and going directly to the theatre and working until 11:00-12:00 p.m. all every night; only to return on the weekends to do more of the same for many long hours. At the time I was working on: set construction, set painting, Stage Managing, Property Construction, Property Management, Stage Crew so yes, the hours were long. In the summer months I played softball with the Park District and worked with another summer theatre production at a local church.

Hearing a diagnosis of MS was the last thing I needed. I didn’t know anything about it, other than what most people think. Cripple. Wheelchair. No, not the thing for someone like me – or anyone for that matter – to hear and take well. I was also told at the time by my neurologist, that judging from the amount and age of the plaques that were present; I’d had MS for at least 10 years! However, the symptoms were most likely so mild that I didn’t pay much attention to them. This is pretty much how the disease can and does start out.

I was one of the fortunate ones in being diagnosed within 2 weeks of my initial trip to a doctor for symptoms. It was while in the hospital for kidney stones that I complained of problems with my eyes. The only way to explain it was that it looked like I was looking through Swiss cheese. There were holes, pieces of the picture missing. They sent me for CAT scans and found nothing. I was referred to an ophthalmologist. One of the first things he said to me was, “Well, you either have something wrong with your brain, or you have MS.” I laughed and said that I already knew there was something wrong with my brain! It was more serious than that obviously. He immediately gave me the name of a neurologist and I saw him the following week.

Upon explaining my symptoms, and symptoms that I’d had over the years, after asking me many questions, he too said, “It would look like you may have MS.” He set up an appointment for me to have an MRI. My “fate” was sealed at that point. After getting the results of the MRI, I was told I did in fact have MS. I was hospitalized the next morning. I say I was fortunate, because many people go years with symptoms that they cannot explain, and get no explanation for from doctors. Many are told “It’s all in your head.” How ironic that this is exactly right! But not in the way they are meaning it.

THE STRUGGLES BEGIN

The first 2 years saw me in and out of the hospital several times with exacerbations (attacks). Most of them were minor. Usually problems with my legs, a heaviness, an inability to lift them that affected my walking, more problems with my eyes, numbness in my hands and weakness of the limbs. During this time, I also started having a lot of trouble with my back due to a car accident many years before. I was seeing both an orthopedic surgeon and a neurosurgeon and after many CAT scans and a Myelogram, it was determined that I had Spondylolysis of L4 and L5. What that means basically, was my back was “broken” at those points. This became my “secondary disease” and I needed surgery to correct it. The surgery was to be done in the early summer of 1987 but had to be put off for a while.

1987 was not a good year for me. In January I had an attack and was in the hospital for 2 weeks. In February I had the Myelogram done which cost me 3 days in the hospital due to the MS. In March I had my most serious attack to date. In July I had a benign tumor removed from my breast. In October I finally had my back surgery – 7-1/2 hours’ worth of surgery. As you can see, 1987 was rather a medical nightmare.

Over the years I’ve had many attacks, more than I can even remember now. I’d been in the hospital so many times, it became a second home to me. My longest remission has been about 3-1/2 years. Normally my remissions have averaged 1-1/2 years. The neatest thing was when home health care came about. Of course, I was pretty much able to do most of the IV stuff myself by that point, which made me a great patient. The only thing I can’t do is start the IV. To this day I cannot look while they insert that catheter for the IV line! I can prepare my medication, hook up the line through the pump, take care of air bubbles, do my own flushes on the heparin lock, and if I have to, I can pull the catheter if it becomes infiltrated as well as unhook myself when the medication has finished.

This ability, made me at times, a hospital patient that is not so welcome. Until they get to know me. The last thing a nurse wants is a patient who can do their job! Over the years, they began to love to see me come in because I would do so much for myself and was rather self-sufficient. It was always funny when a new nurse would come in and question who it was that filled out my I/O chart, who had dumped my “hat”, how did I take a shower by myself with the heparin lock, who brought me clean towels, where were my dirty towels, how did I know where to get the ice and water from etc… I and the nurses who knew me, would snicker because they just let me do it all myself. Okay, sorry, I digress…….

THINGS START TO FORCE A CHANGE OF LIFESTYLE

From mid-1989 to the beginning of 1993 however was a very rough time for me. It became like clockwork. Every 3-4 months I had an attack. Each one required one month of being on an IV every day for 6-8 hours a day. Depending on the severity of the attack, the first day I may have had to have two 8 hour doses with a 6 hour break between them. Thankfully, I was able to sleep during the nightly dose as I was so used to having this additional “appendage”. Normally the last 3-4 days I received my medication by injection as the dose gradually decreases each day. Due to the duration of daily treatment it meant being off of work. Thankfully, I have very understanding and kind employers.

During that time I was unable to do anything in theatre. I wasn’t able to do much at all. MS began to run my life. I started not doing things because I was afraid of what would happen. The attacks had become so regular that I refused to plan to do anything beyond a weeks’ time. It was a very dark time for me. A time that I began to start really “shutting down” emotionally. Only I didn’t realize this until quite recently.

I have had to be hospitalized a few times since 1993 and was not able to use home health care. Treatment has changed over the years considerably. The course of IV therapy is now shorter and the strength/dosage of medication is also higher. Possible side effects are quite different as well. Because of this, my doctor felt it best I be in the hospital when starting this initially. There was a time that my symptoms got worse during home treatment and I needed to start the treatment over and be under the care of my doctor.

While taking Betaseron (one of the “A,B,C” drugs), it had the opposite effect on me. I had every side effect possible. I had severe site reactions, high fevers, severe chills, flu like symptoms, racing heartbeat, became severely depressed, suicidal and had a split personality. The final straw was, it caused an attack. My only choice was to be hospitalized.

The attack I had in March, 1987 was the most frightening, humiliating, agonizing, devastating, frustrating time of my life. At the same time, it was a most enlightening and humbling experience. It is something I will never forget, nor do I ever want to simply because it taught me so much. There is no way that I can relate to you exactly what happened and what it was like. I don’t think someone can truly understand or even imagine what it was like. Many with MS that I have talked to, cannot even do so because they have not experienced anything like it.

I will try to sum up for you the best I can what happened during that time. It is impossible to convey in words, a physical abnormality. So bear with me and I guess use your imagination. Actually I looked quite similar to someone who has Cerebral Palsy. That would be the best way to describe my condition. I was also much like a stroke victim.

Keep in mind for those of you that don’t know me, that today, I am once again involved with theatre. I ride an 1100 cc motorcycle solo that I have taken several long trips on. I travel coast to coast alone (in my truck for this). I go camping sometimes alone, sometimes with others. A new hobby is woodworking that I am learning from my father. People who see me cannot believe that I even have MS.

Also keep in mind, that what I am going to tell you is NOT so that you feel sorry for me. Quite the contrary. It is to educate. To share. To let people in which in turn, helps both of us. To show people that there is much in life, no matter how impossible it seems at the time, that you can overcome or learn to live with. It is to “show” people that having MS does not mean that you must give up your life.

What happens next? Read ‘The Big One’

Categories: Multiple Sclerosis | Tags: , | 2 Comments

Life With MS

MS has changed my life in many ways that have been both good and bad. The lessons that it has taught me are invaluable. The triumphs have been overwhelming. The struggles have and continue to be frustrating and at times frightening. The uncertainty of it is maddening if I allow myself to dwell on it. The future is something I have learned not to “worry about”, yet at the same time it is almost impossible not to. Though my prognosis, as much as there can be one, is one that lends itself towards maintaining an even keel of sorts, the reality of it all is that this can change at any time.

I have been fortunate in so many different ways. My quick diagnosis, my overcoming many hurdles and my ability to maintain a positive attitude are all things that I am thankful for. My being referred to the neurologist that I was, has also helped me in many aspects over the last 28 years. I have seen many doctors and specialists throughout my life. He is one of those rare “one of a kind” doctors. He has become not just my doctor over the years but a friend as well which is so important to me and my well-being during the hard times.

My parents have had to literally put their lives on hold at times and take care of me. I’ve got friends that have been very supportive and understanding over the years. These are things I am SO thankful for.

I feel that it is because of the absolute mind boggling uncertainty of MS, that friends, people I work with and acquaintances, have some understanding and knowledge of not only the disease but what it is that I have been through and live with every moment of every day. It is of the utmost importance to me. Having people to talk to or lean on at times is something that is a huge part of my being able to deal with the disease itself. Unfortunately this has not always been the case and this has been my fault.

In the beginning it wasn’t something that I really shared with anyone. It wasn’t something I really allowed people to be a part of. It wasn’t something I wanted them to be a part of. There are different reasons for this. I don’t feel that I truly accepted it until 1987 (I was diagnosed in 1985). Up until that time the things that happened were not all that serious. Once it became serious, I didn’t know how nor was I able to let people in. I know now that it was a huge mistake. I shut people out for way too long. I dealt with it but I did so on my own. I kept it all inside where it would at times eat me up. This I learned was not dealing with it nor was it very healthy

It’s not so much that I didn’t want someone to share it with I simply did not know how to do so. Obviously I was struggling physically, emotionally and mentally myself. I have always been a strong, independent as well as somewhat private person. When this happened I didn’t realize that I needed people to be a part of it. I only saw that it upset them to see me. I only felt pity from them. Was this the wrong reaction? I knew that wasn’t what I wanted and to be honest, I don’t know if that is what they felt for me. It could have simply been their caring about me that I saw, yet didn’t see.

There was so much going on with my body, mind and heart at the time that even I didn’t fully understand it. It is now, so many years later, that I have thankfully realized that I need to share these things. Unfortunately at that time I just didn’t know how! The only thing I can do now is try. The other unfortunate thing is just that, how do I or anyone else in a similar situation do that? It is extremely difficult to explain and convey all that I was feeling at that very dark time as well as through the years. Just the physicality of it is something that I have found in trying to write these pages, and the times I have tried to explain it to people, is impossible to do. Unless they have been through a similar situation in their lives, they have MS or I’m talking to my doctor. Because really you cannot explain it. Not in words anyway. I have tried many times and have tried in the next several pages.

I think of all of the people in the world who suffer every day, of the hundreds of terrible diseases there are, and I say to myself: “Rae, you are one lucky person. What makes you think you are any different than anyone else? Who do you think you are?” The answer? I am lucky. And I am no different than anyone else nor am I special or unique. I’m simply one of many in the world who have “life” to deal with. It is because of this that I am embarking on this endeavor to let people into my world with MS. It is because of finally realizing that I must share, that it is important to me that people I know – and don’t know – have at least some understanding of this crazy thing called MS.

It isn’t because I feel special. It isn’t because I think I can be a crusader. It isn’t because I think I can save anyone. What I hope I can do is teach and/or help at least one person. Why did I get MS? Perhaps this is the reason. And maybe because I am very stubborn, very independent and downright bull-headed. God, or whoever/whatever you believe in, may be using me as a tool. Yes, in many ways I see the MS as a gift. I know this may make many of you question my sanity. It is how I feel however. Life is a gift, therefore, whatever I learn from and through it, is a gift.

There are millions of people in the world who have gone through things much more terrible than I. Things that I can’t even begin to imagine. There are millions who will continue to suffer much more than I on a daily basis. This isn’t about my trying to think that I know what that is like. Nor is it about my trying to seem “superior” in any way. This is quite simply, my story that hopefully will touch at least one person’s life in a positive way.

Please read on and I’d love to hear from you.

In The Beginning

I was diagnosed with Multiple Sclerosis on August 27, 1985.  I was 27 years old at the time and an extremely active person. At the time I was very involved in 2 Community Theatre groups doing just about everything I could. There were many weeks of going to my full-time job, and going directly to the theatre and working until 11:00-12:00 p.m. all every night; only to return on the weekends to do more of the same for many long hours. At the time I was working on: set construction, set painting, Stage Managing, Property Construction, Property Management, Stage Crew so yes, the hours were long. In the summer months I played softball with the Park District and worked with another summer theatre production at a local church.

Hearing a diagnosis of MS was the last thing I needed. I didn’t know anything about it, other than what most people think. Cripple. Wheelchair. No, not the thing for someone like me – or anyone for that matter – to hear and take well. I was also told at the time by my neurologist, that judging from the amount and age of the plaques that were present; I’d had MS for at least 10 years! However, the symptoms were most likely so mild that I didn’t pay much attention to them. This is pretty much how the disease can and does start out.

I was one of the fortunate ones in being diagnosed within 2 weeks of my initial trip to a doctor for symptoms. It was while in the hospital for kidney stones that I complained of problems with my eyes. The only way to explain it was that it looked like I was looking through Swiss cheese. There were holes, pieces of the picture missing. They sent me for CAT scans and found nothing. I was referred to an ophthalmologist. One of the first things he said to me was, “Well, you either have something wrong with your brain, or you have MS.” I laughed and said that I already knew there was something wrong with my brain! It was more serious than that obviously. He immediately gave me the name of a neurologist and I saw him the following week.

Upon explaining my symptoms, and symptoms that I’d had over the years, after asking me many questions, he too said, “It would look like you may have MS.” He set up an appointment for me to have an MRI. My “fate” was sealed at that point. After getting the results of the MRI, I was told I did in fact have MS. I was hospitalized the next morning. I say I was fortunate, because many people go years with symptoms that they cannot explain, and get no explanation for from doctors. Many are told “It’s all in your head.” How ironic that this is exactly right! But not in the way they are meaning it.

THE STRUGGLES BEGIN

The first 2 years saw me in and out of the hospital several times with exacerbations (attacks). Most of them were minor. Usually problems with my legs, a heaviness, an inability to lift them that affected my walking, more problems with my eyes, numbness in my hands and weakness of the limbs. During this time, I also started having a lot of trouble with my back due to a car accident many years before. I was seeing both an orthopedic surgeon and a neurosurgeon and after many CAT scans and a Myelogram, it was determined that I had Spondylolysis of L4 and L5. What that means basically, was my back was “broken” at those points. This became my “secondary disease” and I needed surgery to correct it. The surgery was to be done in the early summer of 1987 but had to be put off for a while.

1987 was not a good year for me. In January I had an attack and was in the hospital for 2 weeks. In February I had the Myelogram done which cost me 3 days in the hospital due to the MS. In March I had my most serious attack to date. In July I had a benign tumor removed from my breast. In October I finally had my back surgery – 7-1/2 hours’ worth of surgery. As you can see, 1987 was rather a medical nightmare.

Over the years I’ve had many attacks, more than I can even remember now. I’d been in the hospital so many times, it became a second home to me. My longest remission has been about 3-1/2 years. Normally my remissions have averaged 1-1/2 years. The neatest thing was when home health care came about. Of course, I was pretty much able to do most of the IV stuff myself by that point, which made me a great patient. The only thing I can’t do is start the IV. To this day I cannot look while they insert that catheter for the IV line! I can prepare my medication, hook up the line through the pump, take care of air bubbles, do my own flushes on the heparin lock, and if I have to, I can pull the catheter if it becomes infiltrated as well as unhook myself when the medication has finished.

This ability, made me at times, a hospital patient that is not so welcome. Until they get to know me. The last thing a nurse wants is a patient who can do their job! Over the years, they began to love to see me come in because I would do so much for myself and was rather self-sufficient. It was always funny when a new nurse would come in and question who it was that filled out my I/O chart, who had dumped my “hat”, how did I take a shower by myself with the heparin lock, who brought me clean towels, where were my dirty towels, how did I know where to get the ice and water from etc… I and the nurses who knew me, would snicker because they just let me do it all myself. Okay, sorry, I digress…….

THINGS START TO FORCE A CHANGE OF LIFESTYLE

From mid-1989 to the beginning of 1993 however was a very rough time for me. It became like clockwork. Every 3-4 months I had an attack. Each one required one month of being on an IV every day for 6-8 hours a day. Depending on the severity of the attack, the first day I may have had to have two 8 hour doses with a 6 hour break between them. Thankfully, I was able to sleep during the nightly dose as I was so used to having this additional “appendage”. Normally the last 3-4 days I received my medication by injection as the dose gradually decreases each day. Due to the duration of daily treatment it meant being off of work. Thankfully, I have very understanding and kind employers.

During that time I was unable to do anything in theatre. I wasn’t able to do much at all. MS began to run my life. I started not doing things because I was afraid of what would happen. The attacks had become so regular that I refused to plan to do anything beyond a weeks’ time. It was a very dark time for me. A time that I began to start really “shutting down” emotionally. Only I didn’t realize this until quite recently.

I have had to be hospitalized a few times since 1993 and was not able to use home health care. Treatment has changed over the years considerably. The course of IV therapy is now shorter and the strength/dosage of medication is also higher. Possible side effects are quite different as well. Because of this, my doctor felt it best I be in the hospital when starting this initially. There was a time that my symptoms got worse during home treatment and I needed to start the treatment over and be under the care of my doctor.

While taking Betaseron (one of the “A,B,C” drugs), it had the opposite effect on me. I had every side effect possible. I had severe site reactions, high fevers, severe chills, flu like symptoms, racing heartbeat, became severely depressed, suicidal and had a split personality. The final straw was, it caused an attack. My only choice was to be hospitalized.

The attack I had in March, 1987 was the most frightening, humiliating, agonizing, devastating, frustrating time of my life. At the same time, it was a most enlightening and humbling experience. It is something I will never forget, nor do I ever want to simply because it taught me so much. There is no way that I can relate to you exactly what happened and what it was like. I don’t think someone can truly understand or even imagine what it was like. Many with MS that I have talked to, cannot even do so because they have not experienced anything like it.

I will try to sum up for you the best I can what happened during that time. It is impossible to convey in words, a physical abnormality. So bear with me and I guess use your imagination. Actually I looked quite similar to someone who has Cerebral Palsy. That would be the best way to describe my condition. I was also much like a stroke victim.

Keep in mind for those of you that don’t know me, that today, I am once again involved with theatre. I ride an 1100 cc motorcycle solo that I have taken several long trips on. I travel coast to coast alone (in my truck for this). I go camping sometimes alone, sometimes with others. A new hobby is woodworking that I am learning from my father. People who see me cannot believe that I even have MS.

Also keep in mind, that what I am going to tell you is NOT so that you feel sorry for me. Quite the contrary. It is to educate. To share. To let people in which in turn, helps both of us. To show people that there is much in life, no matter how impossible it seems at the time, that you can overcome or learn to live with. It is to “show” people that having MS does not mean that you must give up your life.

‘The Big One’

March, 1987

This particular attack started around 1:00 in the afternoon while I was at work. I was fine one minute and got up from the table after lunch and had quite a bit of trouble walking. By 3:00 that afternoon, I could no longer lift either leg, I could only drag them. I began to lose the coordination of my arms, legs and hands as well as the fine motor movements. My arms were bent and curled in towards my body, both wrists were bent down at 90 degree angles, my hands were clenched into fists, and the only place I was not numb was the right side of my face. Within 2 hours this happened! Yes, it got worse by the next day. You want to talk about frightening!
While having MRI’s done that evening, I was strapped down more so than normal because my arms, hands, fingers and legs were moving involuntarily. One of the scans was of the brain stem which is a very sensitive scan. The slightest movement will cause the scan to be blurred. So much so that you are not even allowed to swallow during this scan! I was told not to swallow for 13 minutes (the length of this scan). That’s a long time! Of course, as soon as they say, “Okay, we’re going to start, don’t swallow or move.” what is the first thing you have to do?!? I didn’t swallow. They did however have to do the scan over because they said I did move, so they strapped me down some more!
I was hospitalized the next morning and put on my friend the IV. This IV would stay with me for the next 3-1/2 weeks while in the hospital. The longest I have ever had to be on IV medication.
I had now lost all the coordination and fine motor movements in all of my limbs. Consequently all of the movements that I made were very erratic and spastic – most especially with my arms and hands. My hands were either in a very tight fist or in the form of a claw all of the time. My left wrist was now curled downwards at more than a 90 degree angle – it almost touched the underside of my wrist. Both arms were curled and misshapen even more than the day before. I was unable to keep them from “holding” themselves against my body. The only way for me to open my right hand was by force. I was able to lay my arm on my leg and force the hand to open to some degree. Upon doing so, the fingers would move uncontrollably – so much so that I began to refer to them as “spider fingers”. With much effort I was able to bring my wrist up to it’s normal position for very short periods of time by using this method of force.

I BECOME HELPLESS –
AND IT’S ONLY THE BEGINNING

It was at that time and over the next day(s), that I began to realize just how serious this was. With each test I was given, I realized what else I was no longer able to do. Each simple, everyday task I tried to perform became what seemed to be an insurmountable obstacle. I was about as close to being in a vegetative state as you could be, without actually being so. Every minute of every day became a hurdle, a challenge, and a defeat. I could no longer function on my own.
My left side was/is always affected much worse during an attack. I was unable to bring this wrist to a normal position on my own at all. Forcing it wasn’t possible. Someone else would have to move it which would cause quite a bit of pain. A plaster splint was made and formed from my forearm to my fingertips. This kept the wrist bent at only a slight angle and my hand at a slight curve with the fingers held in place with straps. This was so that the tendons and muscles did not shorten permanently over time. My left hand was now rendered useless by the splint. (As if it wasn’t already!)
It was impossible for me to pick up anything with my right hand. If I was able to open up my fingers enough to grab something, my hand would immediately return to a fist and crush whatever was in it. On the other rare occasion that I was able to grab something with my fingers, they would immediately release, thus I would drop whatever I had grabbed. Suffice it to say that I really had no use of either of my hands at this point. There was very little I was able to accomplish on my own, or with a great deal of difficulty and time, as I will explain later.
The strength of my arms and hands were tested the first day in the hospital. My left side was less than half of what is normal. The right was slightly above half. Another iron thrown in the fire. My legs were found to be at about 3/4 of their strength with the left being slightly less. My walk was more a shuffling of my feet because I really couldn’t lift either leg. I could stand, but a “gait belt” was put around me when I was in therapy. I was held on to while I walked, so that I wouldn’t fall over. I was put into a box during occupational therapy that comes up past your waist and is somewhat tight. This is to prevent you from falling, when performing “tasks”. Being an extremely independent person, the gait belt and “the box” infuriated me to no end. I would get enraged with being put in “the box”. Being forced to use a wheelchair much of the time was another indignity. I would yell, complain and get very nasty every time these indignation’s were forced on me. Again, humiliation and defeat.

WHAT CAUSED THIS? WHAT DOES IT MEAN?

All of this was caused by a plaque that was about the size of a pinhead at the basal ganglia in the brain stem. As it was explained to me, the basal ganglia is like the central switchboard of the brain. All of the impulses and messages are routed through this area. Consequently all of the instructions if you will, were being stopped at this point. This also caused an inability for my brain to recognize any part of my body unless I looked at it.
Let me try to explain… If I had an itch I could not just reach out and scratch it. I had to look at the area that was itching, then look at my arm, then look at the area and keep doing this until I was able to reach the area of the itch. I was guiding my brain with my eyes to recognize what it no longer was able to. This was true for every movement that I made throughout the day. The lack of coordination, fine motor movement and use of my hands only complicated matters. If I couldn’t see it? It didn’t exist as far as my brain was concerned. One of the tests was for me to close my eyes. They would manipulate my hands, fingers, arms and legs and ask me what position they were in, were my fingers pointing up or down etc. I had absolutely no idea.

I REBEL AND REFUSE TO ACCEPT MY CONDITION

I can remember trying to answer the phone while sitting in bed. The beside table was always right up against the bed with the phone on the edge of the table. Everything was placed as close to me as possible. I would go through this “mantra” as I called it, of looking back and forth for all of my movements that I explained above. Once I was able to reach the phone I would force at least 2 of my fingers open enough to grab the receiver. Then as quickly as possible, throw it, flick it, toss it, whatever, onto my lap. Of course there were times I was not successful in these things. If I was, I then had to work very hard at sliding the receiver up to my ear with my arm, hoping that the person was still on the line. I then held the phone in place by turning my head and wedging the receiver between my ear and the pillow. I would have to call a nurse to hang the phone back up for me. I was used to doing most everything for myself while in the hospital as I said. I rarely called for a nurse. I’d do it myself, or walk out to the nurses’ station to ask for soemthing. I was beginning to have to ask for more help than I was used to.
Naturally, along with all of the physical problems to overcome, the emotional problems soon followed. It was demoralizing to me. I hated every minute of it. I rebelled to no end. I was the worst patient ever. I was sarcastic, rude, nasty and uncooperative. I fought with anyone who tried to help me. I didn’t need anyone’s help and no, I was NOT going to stay this way. It was going to “go away”. I wanted to be left alone. I wouldn’t allow anyone other than my parents and my best friend to even visit me in the hospital for over a week. I didn’t want anyone to see me this way. I was frightened. I was embarrassed. I never knew such humiliation as I did during this time. Such utter devastation and frustration was something I’d never experienced before.
My Occupational Therapist put an old shirt on me one day and told me to button it. I scoffed at her and in a very snotty tone, asked why she would want me to do something so stupid. Guess what? I was not able to button that stupid button. (True, I only had one hand to do it with) However, I had NO idea how to do it. Yup, that’s right. I no longer knew how to do much of what I learned as a child. I knew on an intellectual level, but was not able to figure out how to do it physically. I was much like a child learning everything for the first time.
I couldn’t visualize, understand, nor make my body accomplish most things. I couldn’t write because I couldn’t hold a pencil. I couldn’t bounce a large ball. I couldn’t figure out how to put simple pieces together to make something. I couldn’t place a peg into a pegboard. I couldn’t drink unless a straw was put in the glass and the glass held for me. (I don’t wear hospital gowns, I wear sweats and tee shirts.) Getting dressed was a huge chore. I had to put things on the bed, or floor, and try to get my arm or leg into the openings. Then with my right hand, in a fist of course, inch whatever piece of clothing on by sliding it with that fist. It took forever! To eat, a bed table was put 2 inches below my chin. Special silverware was made with huge plaster handles so I could grab them in my one fist. Most food ended up on the floor long before it got to my mouth. Eating, which I love to do, was an exhausting chore. When you have no coordination, your limbs flail all over. They shake. They jerk. These are just a few of the mundane things one does every day that had now become if not impossible, near to it.
I had been a competitive athlete since 6th grade. I’d always said I never wanted to lose my legs. Well, I changed that tune real quick after this. I had NO idea just how many times a day, and how many things, you do with your hands. Until they were gone that is. It seemed as though all day long, all I did was find out some other simple thing I could no longer do. Trying to blow my nose. Ha! Most did not make it into the kleenex. I had 1 “hand” to do everything with and it was a fist. Now, imagine trying to blow your nose. Imagine going to the bathroom. Imagine doing most anything. Go ahead. Make a fist. Now with that fist, “grab” the kleenex, “grab” the piece of toilet paper. Now, try doing what you’re supposed to do with them. Can’t do it huh? Nor could I. And there was no way that I was about to have someone wipe either of those things for me! Try going about your normal activities for just 10 minutes like this and you’ll get an idea of what I mean about just how much you use your hands and fingers.

I START TO LEARN A FEW THINGS

This brings me to another important point(s). I was embarrassed and humiliated but at the same time, what bothered me more than anything, was seeing what my condition did to those who cared about me. That was perhaps one of the hardest things to deal with. It still is to this day. I said I don’t now nor never have, wanted people to feel sorry for me. I also don’t want to cause people to hurt because of me. I understand that when you care about someone it is very hard to see them in a state such as I was in. Stress plays a big part in MS, it can cause symptoms to flare up. Seeing what it did to my parents crushed me. I knew that as parents, it was even harder for them to see me in this condition. It is hard to explain. It’s the reason I wouldn’t let people come and visit me for over a week. When I finally did, sure enough, the look on their faces said it all. They held it together, but as they were leaving, I could see them walking down the hall from my room, and see that they were crying. This was just as devastating to me as everything else. I didn’t want pity. I didn’t want to make people upset. It was easier just to tell people not to come. If I could have, I wouldn’t have let my parents come. It was very hard to see what it was doing to them.
My best friend was able to act like there was nothing wrong and treat me like “me”. I was so thankful for this. I mention this because when I do have attacks that cause some of these same things to re-occur, I am getting better at seeing people and not being embarrassed or humiliated anymore. I don’t want people to be upset. Which is probably asking way too much. But if it’s possible, don’t show it. Having been in this state, has taught me to no longer look at someone who is in a wheelchair or has any type of physical problem like they are “different”. This is one of the things that I learned through all of this. To be stared at, to be looked at with pity, to feel like you are felt sorry for, is not a pleasant thing. It is human nature to look when we see someone who is “different”. I no longer do that. Because of this I have a whole different understanding of what it’s like to “be different”.
Another thing that really bothers me, and is also hard to explain why, is when someone comes up to me and says, “Rae, you look so good.” I have gotten so that I hate that phrase. I think, “How am I supposed to look?” Are you expecting to see a cripple? Are you expecting me to be in a wheelchair? Are you expecting me to look any other way than I normally do?” Why? And don’t expect that! I know, it doesn’t make sense. It is hard to explain what I mean and why this is true. At the same time, if I do look “different”, I don’t expect you to ignore it in the sense that you won’t ask. It doesn’t bother me to have anyone ask what is going on. I’ll tell you. I don’t hide from it. Just don’t expect me to look different, but do accept it when I do.
I came home from the hospital with several little goodies that help in doing tasks that we all take for granted. A special tool to button a button with. I got to take home my special silverware. I got a special cutting board that has spikes in it to hold whatever you are going to cut so that you don’t have to hold it. The knife that they gave me is actually quite cool. It looks almost like a dagger, and you use a rocking motion to cut things with it rather than the typical sawing motion. They have all kinds of things as aids.

I GIVE UP – AND MY TURN-AROUND

With each thing I attempted I got angrier and angrier. I got more and more frustrated. I became more and more depressed. Until one day I simply gave up. I’d had it. I was done fighting. I was done trying. I was tired of no matter what I tried to do for myself, I couldn’t do it. I told myself there was no way I could go through life like this. Just let me die God, please. This is no way to live.
I got back from a therapy session, told them to close the door, turn out the lights, close the curtains and leave me alone. This was after a little more than a week in the hospital. I laid in bed in the pitch dark and I cried. For the first time since being diagnosed I cried. For the first time I felt sorry for myself. Why me? I laid there in bed and decided I wasn’t going to do anymore stupid therapy or anything else. If this was the way it was going to be, so be it. Leave me alone.
A strange, yet wonderful thing happened then. Someone brought in a plant and a card and set it on the bedside table and left without saying a word. I looked at it with disdain and hate. I hated everyone and everything at that point. Later, for some reason, I decided to read the card. It took quite some doing to even get it open. It was from my “theatre family”. I was about to start work on a show when this all started. It was a huge card, signed by everyone in the show. Words of encouragement, words of love, friendship and telling me how if anyone could do it, I could. That they needed me and missed me. Well, it was a turning point for me. I cried some more. And then, well I was kind of like “Rocky” from that point on. I was going to beat this thing. I was going to get better. Never mind what any doctors or therapists were telling me. There was that small chance that I could regain some function. And damn it, I WOULD!

THE OBSTINATE, STUBBORN, STRONG-WILLED,
BULL-HEADED RAE COMES BACK

I turned on a light, and shuffled over to a table where my friend had brought me some things for therapy. Legos, those huge crayolas they use in pre-school, one of those tablets with the really wide lines they use in pre-school and one of those huge pencils. I started with the Legos. I worked for 4 hours undisturbed by anyone because my door was still closed, on building a 3″ square block. I DID IT!!!!!!!!!!!! I opened my door and called out to the nurses, “Look! Look what I did!” They came and hugged me and we all cried. True, a little block is no big deal to the average person, but to me, at that point, I’d just built the Taj Mahal!
I should explain too, that since I was in and out of the hospital so many times, I knew most of the nurses and staff very well. We had become friends actually. Nurses would come to my room when they had a break to visit, watch TV or just talk. We would have “parties” in my room when I was there. (isn’t that a surprise to those of you who do know me!) So they knew what an achievement my building this block was. What a turn around it was for me to even attempt to try to do it. Which was why I got the reaction I did to my “masterpiece”.
With that under my belt I attempted printing my name. Just the “Rae”. It took quite a bit of doing, and looked like a 3 year old had printed it, I took up several of those large lines, but again, I DID IT! The next day my regular nurse, my “team nurse”, came in. Yes, I had a team of 7 people “taking care of me”. Nurses, therapists, my doctor, psychologist, minister, the Head of Therapy and Rehabilitation and the person in charge of placing you somewhere when you leave the hospital. I showed my nurse my block and my name and we hugged and cried some more. I think my doctor was on the verge of tears as well when he saw a picture I colored for him from a kids coloring book-yup, I went out of the lines!
As I said, it wasn’t just the physical problems; I no longer knew how to do anything. The concentration and effort it took to print “Rae” was tremendous. I was and would continue, to learn how to do everything all over again much like a child. And not just learn. There was more to it than that. I had to teach my brain how to do things in a way it was not programmed to do. There were many things that I would learn over the next 4-1/2 months.
That’s how long it took for me to be almost symptom free by outward appearances. I was not able to go back to work or drive for a month after getting out of the hospital. I did go through a period of about 2 months of very strange seizure type things. They would last for a few minutes and make my arm jerk pretty violently and was actually quite painful. A “short circuiting” of sorts within my spinal cord. Because of where this plaque was, the amount of havoc it was creating was tremendous. There were no impulses from the brain that simply went where they were supposed to go. They just stopped at the brain stem. So re-training was in order. The brain has this capability already. It does it with every attack or any other trauma. It does so with such precision and is so instantaneous, we don’t even realize it. Truly truly amazing. But in my case, there simply was not the capability for the brain to do it on it’s own.

‘Adapting To A New Way of Life’

I learned that the brain is an amazing organ. I don’t think there is anyone who does, or can understand it completely. However, just as a child learns to do things, I too had to learn how to do things that I’d been doing since I was a child.
To this day, almost 16 years later, I still have to do most everything in a way that is not “normal”. ADAPTATION – KEY WORD. It has become a daily routine over the past 4 years now. The adaptation is something I’m very aware of having to do. Once I’ve adapted, it becomes unconscious for the most part. I have learned how to pay attention to the tension of my muscles in my arm, hand and/or fingers for example. By doing so, I know how much pressure is needed to pick up a glass as opposed to a cotton ball. My brain has learned how to do this so that I use the right amount of pressure so as not to crush and/or drop what I’m holding. Although, if I hold anything for any length of time, like the steering wheel, I am crushing it because my had clenches very tightly. Same with holding a pen, it is very difficult to hold for very long. I have learned to concentrate on holding something so that I don’t just let go of it without wanting to. I say a “mantra” in my head when I walk much as I did in those early days in the hospital when trying to reach for something. “Left foot, right foot, straight, walk, left foot, right foot, turn etc… I must always be looking at the ground in order to walk at all. There are times when walking that my left arm will want to curl into my body, my arms don’t sway naturally when I walk, they pretty much just hang because again, my brain still doesn’t know that they are there I guess.
The reason for the mantra and looking at the ground is due to Parietal Indifference. It is the inability of the brain to recognize that which it cannot see. As well as that which it is not currently using. Sounds strange huh? It is believe me. I don’t recognize that I’m standing-other than I know I’m upright. Because I (my brain) doesn’t know there is ground unless it sees it. This concept carries through to most tasks. Some require little effort, some require much more. Walking and stairs are the most difficult. Going down stairs being the hardest. I’m sure because it also requires more coordination. At times when I’ve picked something up, I may have to think about what to do with it. I know it all sounds strange. All of this happens, in a split second for the most part. As I said, the brain is an amazing organ!
I still am not always able to just reach for something unless I look at it first even if I know exactly where it is. I may have to think about what to do with it once I’ve gotten it. I have to be able to see stairs in order to go up or down them. Changing direction while walking or even turning my head will throw me off balance. If someone comes up to hug me, and I am not ready for it, this can throw me off balance.
Walking is not a natural thing anymore. It takes concentration. I have to be conscious of what I’m doing in order to walk straight, not fall over or stumble. Mostly it is unconscious. But there are times when it is not and it does require me to actively be doing that “mantra”. I cannot run at all or walk quickly anymore. It is too hard to keep the legs knowing what they are doing so that I don’t trip and fall.
If my eyes are closed, I have no idea where any part of my body is or what position it’s in. Again, I can’t see it, so the brain has no concept of it existing. If I move it, I’ll know where it is, otherwise not. There are times if I’m not using my arm, that it will hang limp or want to lay against my body – again – it’s not being used, the brain doesn’t know it’s there and ignores it. All it takes, once I notice, is to move it.
My left wrist still curls under to some extent and my hand becomes misshapen at times when I’m not using it. The fine motor movements in my hands and fingers will never be normal. Working with anything small is very difficult. I can no longer “write”. I print. I can only do so for a short period of time. Anything small that I try to hold for any length of time becomes a problem. My hand will still want to crush it, or I will drop it if I don’t concentrate. Sometimes this is true when holding larger things as well. My sense of balance is very bad. I cannot stand on one foot. I cannot walk toe-to-toe in a straight line without looking as though I’m drunk and almost falling over. With my eyes closed, it is even harder to maintain my balance.
I have very little feeling in any part of my body. This too is hard to explain. It is a light sensory touch thing more than no feeling at all. If you stick me with a sharp object, yeah, I’ll feel it. There are times when I may cut myself and don’t know it until I see the blood. It takes awhile for the sensation to be realized by the brain. Because of this I am able to touch very hot things before I realize they are hot. Sometimes good, sometimes not. That’s how I’ve gotten 3rd degree burns before! My hands are probably the least sensitive part of my body.
I tire very easily as do all MS patients due to a decreased amount of energy. Because the brain is working overtime to accomplish each task, fatigue is a big factor. The amount of energy that is spent to do anything is much more than the average person. Obviously, the more severe the damage is the more energy that is required to accomplish a task. There are times when simply getting up from a chair takes quite a bit of coaxing and thought to be able to do it.
My energy level is probably a little more than half of the average person when I’m feeling good. Although, because I’m very obstinate and bull-headed, you’d be amazed at what I can do with that amount of energy.
Many times people will say, “Rae, what did you do? Why are you limping?” Well, to MS patients, we know we are not limping. What we are doing is actually throwing our leg. Because the foot “drops”, you have to use a throwing motion to bring the leg forward in order to lift your foot enough to get it off the ground. This happens anytime that I get tired, sick, worn down or hot.

WHAT DOES THIS ALL MEAN?

This is all permanent damage to my CNS and spinal cord. There are times it gets worse. There are times when I must think about every little move. There are things I cannot do anymore, and never will be able to. If I get tired, get a cold, when it’s hot & humid, or during an attack, any or all of these symptoms can flare up and become problematic. Being around any kind of infection is a dangerous thing. Because as I said in the introductory page, the immune system is affected. A common cold will be much harder for me to get over and will also take a whole lot more out of me than it does others. Anything that compromises the immune system, can and will, make any old symptoms flare up.
My memory has gotten very bad. My attention span and concentration level are very short. I cannot do too many things at once or I get confused. I cannot think of what I want to say a lot of the time. I have trouble using the right word(s), and what I say comes out as garbage or the wrong meaning because I use the wrong word. Sometimes what I want to say and what I do say, are two entirely different things. I know this ahead of time which accounts for some of the hesitation and stumbling. I know I don’t know where the information is in my head. It’s like having a hard drive with a whole lot of bad sectors on it! You know the information is there, you just can’t get to it.
Many people say, “Oh, I forget all the time too. I stumble over words too.” This is a MOST infuriating thing to hear. Something else you learn with MS is that you begin to know what is the MS and what is not. Obviously I know everyone forgets, everyone stutters from time to time, this is natural. It is virtually impossible to explain what it is that is going on in my head during these times. To know what you are trying to say and for the life of you, you cannot begin to attempt to. So you don’t. You say something else. Or you say nothing at all. The information is there, it’s just a matter of when the old computer will retrieve that information. It may be in a few minutes, it may be in a few weeks! Or it may be never. No matter how I try to explain this to someone, I get, “Oh that happens to everyone.” and there is NOTHING more infuriating let me tell you. Because it isn’t that simple.
You may notice these things, look at me funny, and figure out what it is that I meant to say. Because we all do this from time to time. But were you to spend an entire day with me, you would notice the frequency in which it occurs. It is much more apparent when I have to talk about something that requires using the correct words and/or thoughts. Such as at work, or were I actually telling you all that I am here. This is when the hesitation and/or complete blank, or “nonsense” can come out of my mouth. I have learned to make a joke out of it, to laugh it off. Inside, I am not laughing. I imagine it is quite similar to what people with Alzheimers experience. It is frightening as I imagine I am only 43, what will happen as I get older?
Recent studies have shown that Cognitive Dysfunction is a very real part of MS. This is what I have been experiencing more and move over the last few years. It is also what causes much of the above. At least it’s got a name now. Makes me feel a little better. There was a time when I began thinking I was becoming a hypochondriac with all of the symptoms I was experiencing. I was tested again last year, and found to have the most trouble with Cognitive Dysfunction. I was also diagnosed with ADOCD (Attention Deficit Obsessive Compulsive Disorder) 11 years ago. The AD is the more predominant of the two. All of this adds up sometimes creating a little havoc.

HOW THIS ALL AFFECTS MY LIFE

The Cognitive Dysfunction and AD are perhaps the hardest to “live with”. To forget what you’re saying or doing while you are doing it is very frustrating. As I said, knowing something, but for the life of you, you simply cannot retrieve the information at will. It is the consistency of if that is so frustrating. It isn’t a once in a while thing. It is all the time. This is what people don’t understand. This is also what tells me that it isn’t the “normal” thing that people experience. There is nothing worse than being asked a question that you really should know, like the name of your doctor? And you draw a complete blank. Mundane kinds of questions like this that go unanswered make you feel rather stupid at times. Also very frustrating and maddening. If I go to see a new doctor, many times I have to bring notes just so that I can remember names, my insurance company name, medical history etc.. Again, things you would just normally know.
Driving? There are times that I forget “how to” drive or that I am driving. No, I’m not talking about the “gee, how did I get here? I don’t remember driving this far.” kind of thing. I mean literally forgetting how to drive, the skills that it takes. The Cognitive Dysfuntion, along with the other damage to the brain, causes me to see something, but not react to it immediately. It is then, that I have to literally tell myself to move my foot, brake, turn the wheel, whatever the case may be. Makes you want to drive with me huh? Fortunately, the time frame is very quick. I realize it within a second or two. There have been times when it has been close however. Something else at the back of my mind – how much longer will I be able to drive? The other fortunate thing is, it isn’t all the time at this point. Some days are worse than others, while some days I am fine. It all depends on how I’m feeling, if I’m having an attack it becomes more of a problem. If I have something on my mind, the AD then adds to it making it that much harder because my mind wanders way too much. In reality, what I have discovered is, I am almost constantly instructing my brain if you will, what to do, when to do it and how to do it, all day, everyday. I’m not really aware that I am doing this-again, these things become unconscious. The hard part is, this constant instructing, can at times, cause my brain to just shut down. It is too much information for it to take in at once – it goes on overload. This is what is usually happening in driving situations. Again, thankfully, this is not all the time while driving. I have learned to not allow myself to think about other things as much as possible.
This is not true for every MS patient either. These are things that are part of “me”. I use techniques to remember things like association. No it doesn’t always work, I forget what the association meant! Probably one of the most frustrating things for me at this point is my memory and concentration level – or lack thereof. I’m noticing it more and more, and yes, with age it will get worse. I hate the fact that someone can be talking to me and I’m not even listening. Not because I don’t care or don’t want to, I simply can’t. My mind is somewhere else. I am thinking about many different things all at the same time, but not with any cohesiveness. I don’t have control over it. To know that it is happening and having to fight to listen is more frustrating than I can tell you. I have to force myself to pay attention, and more often than not, I am not successful. Trying to force it, actually makes it more difficult at times.
This also affects my ability to learn new things. I think my interest in designing web sites, in computers and how they work, is a big help. These things force me to constantly learn new things, recall what I have learned thus keeping my mind in an exercised state.

BUT YOU LOOK FINE RAE.. I DON’T GET IT

Much of the lingering damage is NOT something that people can “see”. I’ve explained enough of it to you by now. This is another reason why for some, it is very hard to believe I have MS or have been through what I have. No one but me knows what is going on in my head. You can’t see me saying my mantras to myself. I have gotten very good at looking as though I’m listening when I’m not. You don’t know that what I’ve just said isn’t what I intended to say – unless it’s so obvious by a word I use. You don’t know that I’m struggling to remember something as simple as your name. You can’t see the confusion in my brain when I’m trying to do something with my hands, or trying to piece something together. For the most part, all of my symptoms are not outward ones. Of course I’m thankful for this. I have been able to “overcome” many of the physical difficulties or work around them. I’m not having a whole lot of success with the memory etc.. and it only seems to be getting worse.
The things that I have learned to compensate for, are, as I said, for the most part, unconscious. As I get older, and boy how I hate to admit that, it does become a little harder. It requires more effort more frequently. More things have to become conscious. Each attack I’ve had since the one in 87′ has taken me a little longer to get over. It leaves “a little more behind”. In the spring of 1998, I had a very similar attack to the one in 1987. My doctor said it was just as serious. As far as I was concerned it wasn’t. Nothing ever will be. But neurologically, it was. Yes, I was not in good shape for awhile. But no where near what I was back in 87. I was able to care for myself. So to me, it didn’t seem that extreme. However, it did take quite a few months to get through it. With each subsequent attack, it gets a little harder to get over and bounce back. It begins to take its toll.
The important things are I am able to walk. I am able to take care of myself. I’m able to work in the theatre. I’m able to ride a motorcycle – which I taught myself after having been though all of this. I’m able to go on long trips alone on my bike or by driving. I can use a computer to write (good thing since writing is another passion!). I am able to use power tools. I am a photographer. I hold down a full time job.
Yes, there are days when I have to cut back. There are days I cannot do what I want to do. Summer is a hard time for me to be very active because of the heat and humidity. There are days, weeks or months, that I know I cannot take the chance of riding my motorcycle. I cannot put in the hours or do everything I used to be able to in theatre. I cannot do anything that requires the use of my hands, quickly. Operating some of the controls on my camera is difficult because they are small. Most things require more time to do them than they did before. There are many days that each step I take is a struggle to lift the legs because they are so “heavy” or I am so exhausted. This exhaustion doesn’t necessarily come as a result of doing anything in particular either. It just is.

MS Journal – More Recent Account of Things

Updates

May, 2003 –

In March, after being on Copaxone for just shy of 1 year, I had another attack. A rather mild one this time. I was hospitalized for 4 days of IV therapy, and was able to return to work a week later. Is the mildness the result of the Copaxone? We’d like to think so, as that is its purpose. However there really is no way to know for sure. I was hospitalized from the start. The last 2 attacks, we did at home IV therapy, and I ended up in the hospital anyway. I’d like to think it was the combination of the Copaxone and hospitalization as it is a much more controlled environment. Remission lasted about a year and a half.

An interesting sidebar: the day after I got home from the hospital, I got a call from the company that distributes Copaxone. They check in periodically to see how you’re doing. When I told the guy what had happened, this was our brief conversation:
“Did you miss one of your injections?”. “No I did not.”. “Have you ever missed any?”. “No I have not.”. “Well you have a good day now, thank you, good bye.” Interesting huh? When I had all the trouble with Betaseron, that drug company didn’t want to hear any of it either. Not from me, or my doctor. In other words, they really don’t want to know when a drug isn’t doing what it’s supposed to. Makes me wonder even more, how accurate are their statistics in their research? Hmm…. makes me think, not very.

June, 2003-

I have put the bike away for good. I didn’t ride it at all last year. I’ve not totally given in and sold it-yet. I have found something I can do to stay connected with theatre. I am the Web Mistress for TownSquare Players. Actually I got this job last year which entailed designing the site from scratch, then getting it done within 2-1/2 months. Over the last year, it has taken off quite well, which means my having a lot more work to do on a regular basis, in order to keep it current.

I’m on the SARA Committee. “Storage And Rehearsal Area”-which is a building that TSP and WMTC rent and use jointly. I work out there when I am able. My area is props, getting them organized, and eventually, creating a database of everything that we have. Then maintaining that database with each production. Of course, I go see each production and partake in any parties like any good theatre person/Thrustre would! 

Last fall, friends of mine started a Theatre Arts company, Dream Makers Studio and I have since taken over and re-designed their website. Another paid gig that is very exciting!

September, 2003 –

In July I made the hard decision to sell my bike. I’ve known for quite some time that I would never ride again. However, my stubborn streak kept me from making that final step.

My cognitive function has been deteriorating for a while now. At this point it has got me rather upset not to mention afraid. Stairs have become a real obstacle now. There are a lot of times that I am afraid when I’m going down. It is so very confusing to me, most especially as I mentioned, if I have anything in my hands. I find myself more and more, getting utterly frustrated when I am presented with something as simple as picking up more than one thing. I am becoming more absent minded than I was before. I am having difficulty communicating even on the simplest level. I am having a harder time finding the right words as well as the context of the words. I find myself being quieter when I’m in a group of people. At work I have said some pretty dumb things to customers and boy is that embarrassing! I still “cover” these moments, by making a joke of it. I wonder how long that will work?

Because of this rapid progression, I also find myself depressed more and more. I get very frustrated. I get very angry. I get very frightened. I think to myself, “I’m 45 years old. What will I be like in 10 years?” I don’t even want to think about it. Sometimes I think back to that time of 1987 and how devastating that was. I am not in that bad of shape, but in many ways it could become, and is, very similar. Let’s face it that was over 13 years ago, there have been many attacks over the years and I’m older now. I don’t know as I have the same emotional strength not to mention physical ability, to go through something like that again. Then, I was very involved in theatre and couldn’t wait to get back to it. I don’t have that to look forward to anymore, that extra drive to push me, that goal to reach. I had a much more active life then and things to do. Ok, so this sounds melodramatic huh? But it’s how I feel and honesty is still an important part of my life, and my story.

I still have my friends that I know will push me and encourage me if such a thing should happen. I still have the websites to take care of for TownSquare Players and Dream Makers Studios. I still have SARA to attend to when I can. Is that enough? I don’t know, I really don’t. Motorcycling is obviously out of the picture and that too is a very depressing realization. I just don’t feel that I am much of an example anymore for living with MS. I’m still too stubborn to completely give up when things get bad or when I’ve had attacks the past several years. I do know, I don’t go at things with the same tenacity I used to. I get depressed much more easily now. I don’t push myself anymore. That could be my downfall. I can’t help but think about my doctor telling me how my activity level was a big part of my recovery. Hmm… what activity level now?

These are things that weigh heavily on my mind all the time. Especially on a bad day when I balk at going down the stairs, stomp my feet like a child out of frustration when trying to accomplish a simple thing like picking up my briefcase and a letter off the counter, or on nice summer days when I pass a motorcycle.

I still don’t feel sorry for myself, I’m getting more irritable and tired of it all. From outward appearances, people are still amazed to find out I have MS as I don’t have any obvious handicap. As has always been the case, this is a blessing, yet at the same time, a point of contention. It is harder, or so it seems, for anyone to completely understand why I’m not doing the things I used to. That proverbial “But you look so good.” comment. Maybe I should tell them to turn off the light, or simply close my eyes, and let them watch me fall over? Tell them to put a small piece of paper on the floor, tell me I have to walk in a straight line and step over it without breaking my stride? I’m so tired of trying to “convince” people that there is a problem, simply because it isn’t readily seen. Stop doubting me. Don’t be like my brain; if you don’t see it, it doesn’t exist, or I will start showing, rather than telling, what happens in given situations. Wow. A bit of anger here ya’ think? Unfortunately yes. A frustrated anger.

I don’t try as hard and I find myself much more afraid with each attack, than I ever was before. I used to just get mad. I still do, but there is much more fear involved now. It seems that each attack occurs in much the same area of the brain and I can’t help but wonder, just how much more can it take? How many more ways can it find to do things? Seeing how much more difficult everything is than it was just a year ago makes me very anxious. Maybe I should read the things I’ve written in the previous several pages? Maybe I’d realize that I can still accomplish a lot? Maybe I’d realize that I am a stronger person than I’m feeling right now? Maybe. Time will tell. I hope I can get in touch with that part of me again.

I’ll continue to talk to anyone about MS. I’ll continue to tell people that you can’t give up. I’ll continue to tell people to be as active as they can be. I only hope that I can be a somewhat positive example.

July, 2004 – Breaking news

Is it a miracle? Am I cured? It sure seems like it. It was the most incredible thing. I was driving home from work and, well I just felt clear headed. Everything just seemed so damn clear. I can’t really explain the feeling. I wasn’t the least bit confused while driving. My first thought? I can ride my bike! That nite, I went into Woodstock for a birthday party at the Stage Left Cafe’. Normally at a particular intersection in town, I have trouble. There are some small trees close to the stop sign. I know they are there. I know the stop sign is there. I know this. However, each time I get to that intersection, when I see the trees, my brain doesn’t readily recognize the stop sign because it focuses on the trees for some reason. Each time, I slam on the brakes once it finally does recognize that stop sign. Tonite? I stopped just like anyone else stops. Trees? Stop sign? Yeah, so? No biggie. I kind of grunted a ‘huh’ and continued to the Cafe’.

Now normally, I have a hell of a time remembering people’s names. It takes a few seconds or minutes for me to get the names. Normally I have a problem having conversations for any length of time, and having fluid conversations where I’m not searching for words, or saying the wrong things. Not tonite. Everything was a breeze. I didn’t stay very late. The whole time I kept thinking, ‘What is going on? This is so great – but what’s happening?’

I didn’t say anything to anyone about it. I think I was in shock, or maybe I didn’t want to jinx it. The next morning in the shower – I closed my eyes and for whatever reason, did NOT put my hand out to steady myself. I was fine. I kept opening my eyes, closing my eyes over and over just to be sure. No problem standing. I finally continued with my shower anxious to get out and try some other things. I walked heel/toe. I walked a totally straight line. I never waived, lost my balance, nothing! I stood with my feet together; eyes closed and was steady as a rock. Ok, here’s the big test. I walked on my heels all the way down the hall. OH MY GOD!!!! These are things that I have never been able to do since the MS. This was amazing. This was incredible. This was a miracle. I don’t care what anyone says, that’s what it is. I knew I still had MS that it just didn’t go away, but ya know what? I am just going to enjoy the hell out of whatever this is for now.

That day I began telling people. I was so excited it was hard not to. I told my mom a few days later. I wanted it to last a little while before getting her and dad’s hopes up. She was very excited as well. The next step is to contact the Doc. He’s going to go nuts!

I saw him the following week. I didn’t even give him a chance to ask me to do things. I was like a little kid. As soon as he walked in the room I was like, “Look! Look at what I can do!” He just shook his head and said that were he a drinking man, he’d be out at the bars that nite. He did order an MRI to see what was going on. We both joked that it was going to come back “clean” the MS was gone. If only.

The following week I had an MRI and here’s the really odd thing. I’d had one done exactly 1 month prior to this one. There was nothing new. This MRI? There WAS another plaque. What? How can there be a plaque and I’m better than I’ve ever been? It didn’t make sense to me. None of this made sense to me. How was I able to do things that I’d never been able to do? How did my cognitive function take a complete turn around?

This is how he explained it to me: The new plaque was in an area of the brain that has more to do with personality – or as he jokingly said, ‘If you start acting crazy or something, we’ll know why.’ I asked why the sudden change and he said that it doesn’t happen very often but there are times when a person goes into what they refer to as a very deep remission. Not that I’m cured, but nothing is aggravated and things actually will function quite well. How long will it last? No way to know. What caused it? His best guess is that I am on Zocor, which they have found to help people with MS, which is why he put me on it in the first place. One of the side effects is that it acts much like an interferon that cost thousands of dollars. The Copaxone, Beteseron and Avonox. EXCELLENT I say. And it will also help reduce my cholesterol – what more could I ask for?!?

I did drag the bike out since I’d not sold it yet. Since the poor thing had sat for so long, it didn’t want to start. I bought a new battery, Doug from work came out one nite and installed new spark plugs for me, but it still wasn’t staying started. He said the carbs needed to be dealt with – they varnish in time. Since it wouldn’t run, I had to have it towed. Once I got it back I took it for a spin. It was great. I didn’t have any problems. Wow. How awesome is all of this???? I waited a few weeks before getting a new sticker for the plate; just to be sure things were still good.

2005 to 2007

Things continued to remain very stable. I began taking vacations and continue to do so. This year I am going back to New York City over Memorial Day. I am hoping that Sandy will join me in Boston in October. I am debating about going to Bar Harbor this year. It has just gotten so expensive just to get there – my airfare this year will be over $100.00 more than last year. Not to mention the cost of The Inn-which I love and wouldn’t stay anywhere else anyway. It’s only April, so I have some time to think about it and decide.

I rode my bike to work a few times in 2004 and 2005. I was never quite sure of it after getting it back from the repair. It didn’t seem to run the same way it used to. I also had to have some other work done to it as well-routine things had it been ridden all that time. Near the end of the season in 2006, I got the wild notion to get a new bike. Mine was 10 years old now, though it only had 5,000 miles on it and I was somewhat afraid to ride it because of the way it felt. I returned to the Yamaha dealer in Woodstock that I’d bought a bike from before and purchased a new Yamaha V-Star Classic 1100cc. It’s gorgeous! It is also huge. Almost 10″ longer than my old bike and over 100 pounds heavier, it weighs about 700 pounds with everything I have on it that are extras. However it sits much lower so it doesn’t feel that heavy. It is the style bike I have always wanted – full fenders, floor boards, heel-toe shifter – which has taken a little getting used to. As I bought it so late in the year, I didn’t get many miles on it before I had to put it away for the winter. My first order of business this year is to take it in for its required 500 mile tune-up. I’m looking forward to a new riding season.

2007 – 2014

As time goes by, things are not quite as good as they were a few years ago. I traded in my bike in July of 2011 and did not replace it. I had not been riding much in 2009 and I knew it was again time to make that hard decision. Many things have been happening with my body, some are MS related, and some are just getting older I suppose. I began having more and more trouble with the Cognitive issues again while riding the bike, as well as, my balance was getting worse as was my leg strength – all of which are pretty important on a motorcycle! I was able to use my bike as a trade in on my new vehicle, so that’s what I did in 2011.

I seemed to be having an awful hard time of raising my legs for a few years now, it was worse if I was carrying , anything regardless if it weighed 5 pounds or 50 pounds, it made it that much harder to lift my leg up a step. As this got worse, I started to go up and down the stairs, one step at a time. More often than not while going up, I was bent over leaning on the steps as I went up. This was in part because of pain – my knees are in pretty bad shape, the grinding that goes on makes me sick to my stomach. It has gotten to the point that I can only lift my left leg about 2” off the ground. If I “throw” my leg to pick it up, it immediately drops to the ground. I can’t hold it up. My right leg I can still lift, and hold it for a few seconds off the ground, it is just very ‘heavy’. I will not carry anything up or down the stairs unless I can hold it in one hand. I have to be able to hold on to the railing or wall with the other. There are times when I will hesitate before going up or down because I’m trying to figure out just how to do it. There is nothing natural, normal or rote about using stairs anymore. It is quite the challenge.

I am very unstable on my feet – I lose my balance a LOT. So long as I’m near something, I can catch myself, however I have fallen quite a bit while outside. I broke my left ankle on Valentines Day of 2012 because I rolled it 3 times trying to catch myself from falling – I still went down to the ground landing on my knees. This ankle has healed properly and there will be no surgery. I broke my right ankle the same way, in 2010. It required reconstructive surgery. While on vacation in San Francisco in 2012 I fell 3 times, hurting mostly my pride, although there was a lot of blood when I did a face plant at Coit Tower. My knee was pretty banged up and bloody as well.

I am very mindful while walking anywhere that is unfamiliar, and especially so on any stairs. I seem to not only be unsteady when I’m someplace new, but also a bit confused. I can only assume that I am requiring so much concentration on where I’m stepping that it might just be too much for the brain to process quickly? I always seem to feel a little “off” when I’m someplace new because of this. That includes a store or wherever I happen to be. I cannot look around while I’m walking, I have to be looking at the ground – always. It’s a must. I will say that this keeps me from some adventures on vacation in that I won’t go off the beaten path like near a shore line. I won’t even attempt to try to walk somewhere that isn’t paved, or at the very least a smooth path. This year, (2012) in San Diego I was at Mount Soledad and would have loved to go down the path and explore the shoreline, but there was just no way that I could. It was quite steep and very rugged.

2 years ago while in Ventura, CA I made the mistake of going down to the water’s edge at a point that meant stepping down via a pile of large rocks/boulders with small foot paths in the middle of the piles that had been made by people walking this path over time. I took 2 steps and just stopped cold. I’d forgotten that something that simple was in no way simple. Not anymore. I was so completely confused as to where to put my foot to go any further. This is very hard to explain……if there is anything in my path while walking, it will confuse me, it can be the size of pebble, but it is still something I have to ‘factor in to my steps’ before I get to said obstacle. Because I have to always be looking at the ground, I am also looking a bit ahead to see what’s coming – when I see there is a curb coming, or there is something as simple as a small stone, I can’t just keep walking and deal with it when I get to it. I have to start thinking about how I’m going to step around it? Can I step on it? Do I need to stop to go around? What do I need to do? All my brain knows is there is an obstacle and it is difficult to process that obstacle. So there I stood on this pile of boulders wondering how in the world I was going to get back to “land”. While I was standing there a little girl came bounding down and clamored over the rocks to get around me. I was mortified as I sat down on a rock and turned myself around, then stood up. Now that I was at least facing the right direction, I still had trouble figuring out how to move and where to put my feet! Eventually I picked my way back to the sand. It seemed like a monumental task when in actuality it was no more than a few steps. UGH!

I will not go into my driving. I am afraid someone will turn me in and take away my licence! There are times that I know I should not be behind the wheel, unfortunately, it isn’t until I’m in the car, on my way to or from someplace so I don’t have much choice other than to continue on.

I can no longer lift my left leg any more than about 2-3” off the ground. Now any kind of an incline is a challenge – the amount of the incline determines what I need to do. Swing the leg slightly out? Swing it back and throw it? Or just take very small steps. Same thing with a step or a curb. If I am tired, then I swing my leg back and up and use the momentum to lift it up each step. I also, kind of sway at the waist, using my body’s momentum to help. This year (2013) while on vacation I ended up doing this way more that I would have liked. If I am sitting down, I can’t lift my leg at all. I use my hand to pick up my leg, or again, I can swing it up and grab it with my hand.

My overall strength is becoming less rather quickly. Problems with not being able to focus on anything if I turn my head is much worse. I’m told it is because the left and right hemisphere of the brain are not syncing because of the amount of scar tissue at the point that takes care of that. So my eyes are not tracking correctly.

Every day is a challenge, physically and mentally. Some days are harder than others. I get frustrated and angry a lot more often these days. I’m still working 5 days a week, full time. I have to so I have money to go on vacation- LOL!

Just take it day by day…… as I am all too familiar with the fact that it could be a lot worse and everything can change in the blink of an eye. Just do it as Nike says in their commercials. I cannot give up.

Perseverance, tolerance, strength, patience and adaptation……..

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