Multiple System Atrophy

When I was a kid I had friends. Some of them were long lasting friends that I still have today after 45 some odd years. We still talk about the good old days and laugh about the silly things we did. The funny ingenious costumes we would come up with for Halloween,the boyfriends we had. Sitting on our favorite corner smoking cigarettes, trying our first beer and getting sick. We were so young and full of life. We had plans, and all the time in the world. It seemed to take forever to graduate high school, a lifetime. And then in the blink of an eye we were old. We don't feel like we're old but our bodies say we are. I have a friend. We didn't always get along, we had our own feelings and opinions, we certainly didn't always see eye to eye. But we always remained friends. Now she is sick. Several years ago she started to walk funny and sometimes her arms would shake, just a little, now and then. When she walked it made me think of an old lady who shuffled along. That's what she looked like. It was weird. We would see each other every few months or so and her walking and shaking would be a little more pronounced. After a year or so it was really affecting her life and she finally went to the doctor. They thought maybe she had Parkinson's and did all kinds of tests to find out. They started to give her Parkinson's meds. I don't remember what they were this was just something she told me. After many many months and a battery of tests, the doctors decided that she didn't have Parkinson's and took her off the meds. By now this had been going on for well over a year and her symptoms were getting slowly worse. She was getting stiff in her muscles and the shaking was getting worse. I'm not sure how many doctors she went to see, but it was quite a few. They even sent her up to Chicago to see some specialists and they couldn't figure out what was going on with her. Very frustrating to say the least. All of this seeing doctors and specialists and all the tests they ran on her, took 3 or 4 years. So now this has been going on for about 5 years and still they don't know whats wrong with her. By now she hasn't worked in well over 2 years and money and health insurance are an issue. Without a diagnosis its pretty tough to get disability. She moved in with her mother who is well into her 60's and her mother had to go back to work so they could pay the bills. Her family decided they had no choice but to take her to Mayo Clinic. Maybe they could get an answer. She went through 4 full 8 hour days of testing at Mayo Clinic and then she was sent home to wait for the results. Finally after a month Mayo Clinic told her she had Multiple System Atrophy formerly called Shy-Drager Syndrome.  

Multiple System Atrophy is a rare neurological disorder,that impairs your body's involuntary functions. Many symptoms of Multiple System Atrophy are very much like Parkinson's, such as stiffening of the muscles,slow movements, shaking and poor balance. Multiple System Atrophy is a degenerative disease that more men than women usually get in their 50's. My friend was 45. The disease progresses slowly and it eventually leads to death. Multiple System Atrophy affects multiple parts and functions of the body.

1. Unsteady gait and loss of balance
2. Slurred speech, slow speech
3. Impaired ability to swallow
4. Irregular heartbeat
5. Loss of bladder or bowel control
6. Blurred vision or difficulty focusing
7. Losing your ability to sweat and to produce tears and saliva
8. Abnormal breathing at night.
   
9. Low blood pressure when standing
   
10. High blood pressure when lying down
11. Impaired control of body temperature, and intolerance of heat
12. Constipation
13. Confusion
    
14. Rigid muscles, difficulty bending your arms and legs.
    

Multiple System Atrophy is an atrophy of the part of the brain that controls the internal body functions, digestions and movement or motor control. The scientific community doesn't know why this occurs and is studying whether its caused by environmental toxins or an inherited issue. They just don't know. There are some complications with Multiple System Atrophy, such as injuries from falling from the rigid muscles and unsteady gait, loss of your ability to do the day to day care of yourself such as bathing and brushing your teeth. The loss of your ability to swallow will result in a tube for feeding. Vocal cord paralysis making speech and breathing difficult.    

There is no cure and the end result of this condition is eventual death. Most people diagnosed with this condition have between 6 to 9 years after symptoms first appear. Some people have been know to live 15 years. Most people die because of the inability to breathe. There are drugs to treat the symptoms but not the condition. It is terminal.

So now my friend sits at home alone much of the time because her mother is at work, her siblings and friends are at work too. She wears a neck brace because she can't hold her head up most of the time. Last week another friend of ours and myself  took her out to lunch. She could get into the car with a little help but getting out was very very difficult for her and me. I had to lift her legs out of the car and then pull her to a standing position to get her out. Her legs were very stiff and felt like rocks to me. She outweighs me by about 70 or 80 pounds so it wasn't easy. We finally got her into the restaurant and had a nice time. But she is not as talkative as she used to be and she sometimes struggles to say what she wants to say. She had pancakes for lunch and it took her 10 minutes to butter and put syrup on them. I asked if I could help several times and she told me no. She looked up at me and gave me a little smile and said, " My food is always cold." I had to get up and go to the bathroom because I didn't want her to see how that statement affected me. It was like one tiny statement summed up the whole stinking deal. We don't know how much time she has left but she gets worse everyday. And now I must end this hub because my heart is breaking and I can't see the page through my tears.