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.
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……..