It took a few days to get into a routine of caring for Al once again. With the help of some programs we were able to get Al a lift chair. He loved it. He was able to get in and out of it without my assistance.
To me, no matter what illness you have, independence is something that should remain strong for as long as possible. The one company that had been in Al’s life got involved with me and Al again.
With the help from the waiver, this company was able to provide a transit bus to come straight to our front door. Al could be taken out to the bus in his wheelchair and with the help of the lift on the bus, Al was able to go to the Day Program.
In the Day Program, Al could be social with others like himself. He ate the packed lunch I prepared with his friends. He made crafts and made plenty of friends. But soon this died down as Al became more tired.
When Al had still been in the nursing home the staff recommended a Neurologist for Al to go see. This was for a second opinion. We went to the assigned appointment. Up until entering that door I had totally forgotten that we had seen this doctor once before, years back after he had his heart attack.
When we were entered into the data system and shown which door to go into to wait to see the doctor, I was still a little leery of this doctor. After all we had a Neurologist already. Our doctor was full of life and made Al feel at ease and sometimes produced laughter from him.
But on the other hand I wasn’t going to argue. Our Neurologist did not prescribe certain medications so Al was at a standstill. So maybe this doctor could add something to the recipe.
When the doctor walked in I recognized him immediately. How could my mind have slipped so bad? I place the blame on being a caregiver and dealing with so much all at the same time.
The doctor said hello and then turned to Al. ” How have you been since the last time I saw you Al? I can see there have been some significant changes since you were here before.”
I didn’t say anything to that remark. I guess I didn’t want him to realize I had forgotten who he was. Al smiled but didn’t say anything. By now, Al didn’t talk near as much as he used to. It was quite alright for me to do his speaking for him, although he was right there beside me in the room.
After doing some tests on Al he looked at me and said, ” I knew what was wrong with Al the first time he was here but I couldn’t say what it was because there wasn’t enough documentation per say. But now I am absolutely positive, your brother has MSA.”
I shot a look at the doctor. I was so surprised to hear this. Oh not that he hadn’t said these silent thoughts before but for the fact here I was in nursing for over 20 years. I had dealt with all types of illnesses in those years and had never heard of this.
I asked the doctor, ” What in the world is MSA?” He went on to explain, ” It is a neurological disease. It is similar to Parkinson’s Disease but there are a few major differences. For one, MSA,( Multiple System Atrophy) does not seem affected by the popular medications that are used for PD. Another difference is the brain loses contact with anything Al would want to do with his body. The memory stays in tact with MSA. Rarely is it ever lost such as in a PD patient. The last thing is the life expectancy. PD patients can live many years with this disease, but for an MSA the average life span is six to seven years.”
I looked at him but really didn’t say much. I glanced at Al to see if he had caught much of what the doctor had said. I don’t think he did. Al was more interested in going to lunch like I had promised him we would do after leaving here.
My mind was starting to roll like a train taking off on the tracks. What is he not telling me? What is this MSA for sure? I kept hearing six to seven years life expectancy. Looking back, Al had already had this terrible disease for five years now.
The doctor wrote some notes on a yellow sheet of paper and when Al and I were ready to leave the doctor handed me the paper. He patted me on the back and said, ” Read these notes. If there is anything or anyway i can be of help, please don’t hesitate to let me know.” I smiled and then wheeled Al to our car. We were off to lunch and I could tell from Al’s actions and words the doctor’s words didn’t sink in.
We went to Al’s favorite place, Zales Pharmacy. Al and I had grown up there I should add. Our parents had gone there it seems forever, so everyone knew us. The staff always made Al feel so special. They waved at him each time he went in and said hello. Different people would sit and chat with him while we ate at the inside luncheonette.
This time though I didn’t talk as much. I spent my free time reading the paper the doctor had given me. It pretty much said in easy words, that there was no cure for Al’s disease. That this disease could affect his already damaged heart. I was to make sure Al kept up with appointments at his heart doctor. The last thing he had written was how sorry he was that he had to give me this terrible news.