Thursday, May 7, 2009

Story - Life Changes

Life Changes By ParaGirl
Tina had been up with her ankles aching and feeling strange. She shrugged it off to overtraining on the track and did some stretches each morning, and she was usually OK, but she was getting concerned. Her feet and ankles felt strange lately, she had some bouts of numbness, and she noticed herself getting clumsy sometimes. She really began to get concerned as her track times started going up, though she was running as hard and as fast as she could. She talked to her coach about her concerns, and she sent Tina to the school nurse, who poked and prodded a little and recommended aspirin and a break from track. She said it was strained muscles, and to rest for a while. Tina was somewhat relieved, though she felt bad about missing track, and took the advice.
Even though Tina rested for a week, taking aspirin and keeping her activity to a minimum, her ankles got worse. They didnt hurt, exactly, but they just didnt seem to be working right. It was a Thursday morning, and as she got up to get out of bed, her feet just turned in at the ankles and she fell. Her mother took her to the hospital that morning, and after a battery of tests, her doctor came in to talk to Tina.
Hello again Tina. We have the test results back, and Im afraid they have confirmed my suspicion. You are in the early stages of Multiple Sclerosis. Tina, Multiple Sclerosis is a disease of the Central Nervous System, your brain and spinal cord. In a person with MS, the insulation surrounding the nerves, called myelin, is damaged or destroyed. When this occurs, messages from your brain are lost or interrupted. There are various symptoms you may experience with MS -- vision loss, double/blurred vision, numbness, coordination problems, balance problems, etc, but many people with MS, with proper treatment, are able to live full and healthy lives.
Will I get better? Tina asked, obviously afraid of the diagnosis.
Well, currently there is no cure, but were hopeful that there will be a cure soon, were getting closer to it every day.
But what about my ankles? She asked, looking up from the hospital wheelchair she had been in since she had gotten there. Her ankles were very weak now and it was very difficult for her to walk.
Your ankles seem to have been affected most, and at this time it appears to be irreversible. I will make an appointment with you in our orthopaedics department right now, and you can be fitted with a pair of braces to help stabilize your ankles.
Braces? Ill need crutches and braces? Tina was almost hysterical at the thought.
No, Tina, no crutches, at least not now. They will give you shoe inserts that reach to just below yoru knee that help stabilize your ankles. They will barely be noticeable, and for now you wont even need crutches.
For now? Tina asked.
In many people, MS is a progressive disease. It may not, but chances your ankles, or even legs, will get worse, forcing you to use crutches, possible longer braces. I wont lie to you, Tina- there is a chance you could end up in a wheelchair. I know this is a lot for a young girl to take in, but its not all gloom- there are millions of people who live very normal, successful daily lives with MS. Even famous people, like Michael J. Fox, have MS. My suggestion to you is to follow the treatment plan Ill outline for you, do exercises that dont raise your body temperature, eat properly, and live as normal a life as possible.
Tina was wheeled to orthopaedics, where a very nice woman who introduced herself as Dr. Sadler helped her onto the examining table. She looked over some charts, explained the measurements she was taking, explained how Tinas braces would help her walk better, and just made Tina feel better. She finally brought out a pair of plastic braces that were much smaller than Tina had originally imagined they would be. They were a white plastic, with a wide velcro strap that would fit around her shin, just below her knee. Dr. Sadler put them on Tinas feet and Tian put her sneakers back on over them. They were tight- Dr. Sadler said she might want to go up a half size when buying new shoes. Tina carefully stood up and Dr. Sadler helped her take a step- she was fine, the support of the braces almost totally counteracted the effects of the MS. Tina walked around the room a few times to get used to the new sensation of the braces, but aside from a slightly clumsy looking gait, she could walk better than she had in a week. She left the hospital with a much brighter outlook for the future.
School wasnt as difficult as Tina had thought. She was still a member of the track team- honorary anyway- and still stayed late with the team doing stretching, though she avoided any rigorous excercise as her doctor had recommended. She got some looks because of the way she walked in the braces- a bit stiff and kind of clumsy- and she got a lot of looks when she walked out onto the track field in shorts, her AFO braces out in the open. Most of the reaction from her friends and peers was very positive, though there were people who werent sure what to do or say around her. She took it all in stride, but the fear of her condition getting worse was always in the back of her mind.
Tinas fears began to come true in the middle of the school year, just after the holidays. She found that, even in the braces, her gait was getting worse, her toes turning inward sharply, and she was losing sensation in her feet, she could no longer feel her toes or the soles of her feet. When she went in for a check-up in February, her doctor saw her gait and became very concerned. He did a few more tests, mostly reflexive tests on Tinas legs.
Tina, as Im sure you know, your condition is getting worse. You have a 40 percent loss of sensation in your left foot, a 35 percent loss in your right foot, and your muscles are beginning to show signs of contraction and atrophy. Fortunately most of the effect is still concentrated in the nerve bundle for the lower legs, thats very good actually. You can still stay in the smaller AFO braces, but youre going to have to start using crutches, and Im going to get you into a physical therapy program three days a week, to help stop the damage to your feet from progressing.
Tina had expected as much, and had been contemplating crutches herself as it got more and more strenuous to walk straight. One thing her doctor said did bother her, though.
Doctor, she asked, What did you mean when you said most of the effect is in my lower legs?
Tina, these last tests show that there is some effect- very little, I must say- in your knees and upper thighs. You obviously dont even notice it, which shows how minor it is. We will keep an eye on it, but for now I wouldnt worry. Youre doing very well with your diet and exercise.
Tina left the hospital on a pair of aluminium forearm crutches, and she had to admit that walking was much easier for her using them. She could tell her mother was bothered by them, though she didnt say anything about them. The AFOs could be ignored easily enough, but to see her daughter walk in on cripple crutches somehow confirmed Tinas disability.
Tina saw more stares at school, and more people uncomfortable around her, but overall her experience didnt change much once she was on the crutches. Carrying her books became impossible, so she got a backpack to carry everything in. She no longer went out with the track team, because three days a week she left school early and went to Physical Therapy at the local rehab center. She had massage therapy on her feet, hydrotherapy in a very warm whirlpool tub, and several other types of therapy on her feet and legs. She was gaining a lot of upper body strength due to all the crutch walking, too. Though the therapy wasnt helping her regain much use of her feet, she thought it was helping the rest of her legs stay strong so she could stay out of a wheelchair. It wasnt until almost six months later that she noticed a problem with her knees.
Im afraid its still progressing Tina. Its slow, but its fairly steady in its progression. The feeling in your knees will progress to the point where your ankles are at- you already have a significant loss of motor function in your left knee, which Im sure you already know. Walking in your current braces will continue to get more difficult for you- I would guess that youll be able to use them for another month, maybe two. Fortunately you can be fitted with full leg braces, they should keep you on your feet for a long time, maybe indefinitely, depending on the MS.
By this time, Tina had read up on everything she could find on MS. She knew the Doctor was being optimistic for her, but that he could be right, her legs could stop getting better tomorrow. She could also wake up blind one morning, too- the symptoms of MS were random, at best. She was fitted for a set of full metal leg braces, knowing the day would come sooner or later when she would need them.
Dr. Sadler showed Tina how to put on her leg braces. They were long and not quite as heavy as Tina thought they would be. She slipped her feet into the shoes- she had to help her feet a lot now, she had very little feeling or motor control left in them. Dr. Sadler showed her how to buckle all the straps that encased her legs, how to lock and unlock the knee locks. Tina had to actually learn how to walk on the large new KAFO braces, first practicing on parallel bars, then with her crutches. It was difficult, but Tina got the hang of swinging her legs through the supports of the crutches, making sure her heels and feet landed together and evenly. School wasnt in session, but it was less than two weeks before her senior year started. She found herself looking at college brochures, noticing things like wheelchair accessibility more than athletic programs. She was hopeful that her condition would stop with her legs as they were now, but something inside her told her otherwise.
Tinas senior year was eventful, to say the least. She started dating, a guy who didnt mind the braces at all, and when she told him the truth, about how she would probably get worse, he was genuinely OK with that. She was accepted to a good state college in the program she wanted, journalism, and she gave a talk on MS to the whole school, inviting guest speakers in to talk about the disease and the search for a cure. The high point of the presentation was when their state Senator came up the podium to talk about state programs to support help research for MS. He admitted that he, too, was diagnosed with MS when he was twenty years old, and he had obviously lived a very full and successful life in spite of the disease. It had affected his hearing to a degree, apparently, and one of his hands didnt work well, but he had lived a long time with the disease and still become a senator. Tina received a standing ovation for her presentation, and they did a story in the newspaper about the whole thing, with Tina on the front page in her braces and on crutches.
Tina didnt even notice the next problems until they were very obvious. She got up one Saturday morning and began putting her leg braces on, first slipping her feet into the sneakers that were attached to them. It took her two tries to tie her shoe, and she had trouble with every buckle on the braces, her hands not cooperating with the leather bands. She froze, thinking back over the last week or so, realizing that she had been having problems with her hands she hadnt even noticed, or had purposely ignored. A trip to the doctor confirmed what she feared- the MS was affecting her hands and arms, too, more quickly than it had effected her legs. For the first time, Tina was looking at a wheelchair and thinking the word confinement.
She was still able to use her crutches, but started using a wheelchair at home to rest her arms, which were getting tired more easily. It soon got to the point where her mother had to help her put her braces on and take them off, and after a few months she began to forgo the leg braces entirely, using the wheelchair full time. The last time she put her leg braces on was for her high school graduation- she wanted so much to walk up and receive her diploma, and she was able to, just barely, crutch up to the principal and take the rolled piece of paper, waving it over her head triumphantly before crutching slowly back down to her wheelchair.
College life in a wheelchair wasnt that bad- the campus was very well accessible, and there were many disabled people on campus, both student and staff. One of her own teachers was an arm amputee, and he pointed to people with his shiny chrome hook all the time. She continued a physical therapy program every other day, mostly for arm strengthening now, as her legs were very bed. Out of her braces, Tinas legs were thin, she could barely move them at all any more. Her toes curled in and her feet pointed inward naturally, making it difficult to adjust them well in her wheelchair, and it was almost impossible to cross them any more. She kept with the manual wheelchair for her entire freshman and part of her sophomore year, but as she asked for a helping push more and more, as her arms got weaker and the pushing of her wheelchair got more difficult, she knew she had to make a choice.
Her new wheelchair was red, a motorized model with a simple joystick mechanism for driving it. It became much easier for Tina to get around the campus in it, but it also separated her more from other people. A woman in such a wheelchair was obviously very disabled, and not many people knew what to do around Tina any more. Her real friends stayed by her and helped her through the tough times she had, and she again adapted to life with MS. She finished school with honors, getting her degree in Journalism and getting a job with a major metropolitan newspaper.
Tina married her college boyfriend, who had helped her so much during her toughest times. After college, her MS seemed to stop progressing, and though her arms were weak and she still needed her power wheelchair, she never got any worse. She started a family, won several journalism awards, and eventually wrote a book about her struggles with MS.
The End

1 comment:

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