Chapter 28

This new diagnosis changed everything. Some ways that Al had been acting didn’t seem right for what PD did. In a way it was a relief to know that he now had MSA.

You can type this in your own search bar and get some information on MSA. I won’t try to make you believe that you will find all the answers to your questions. There isn’t a lot of information on this wicked disease.

From the day we got home from Zales, I began to be my own teacher. I studied for hours, days and months. I read everything I could. I talked to people and doctors. It was disappointing to me that barely anyone in my own living area had ever heard of this.

I knew that the kind of person I was, I would dig in and come out knowing as much as anyone would allow me to soak in. I would be my brother’s advocate, sister and guardian. I thought I would always stay on top of this and be mentally and physically prepared for whatever was to come at us.

Of course I was wrong. How can I actually know anymore than some doctors? But, I did learn a lot. I belong to Facebook and there are several member web pages that are full of people who have MSA.

Actually I always felt honored to be included in the web pages. We became like family. I have several friends who are suffering from this disease or have family members who are. I felt and still do that most of those suffering from this terrible illness belong on Facebook. You ask me why I think that? Because MSA, is so rare.

Multiple system atrophy has a prevalence of about 2 to 5 per 100,000 people.

People like Bonnie, and Carole, Janiece and Lise and Connie are among the dear friends I have made through Al’s illness. I believe in the old saying, no matter what storm you are going through, there is a rainbow if you look hard enough to find it.

This is the way I feel about these friends of mine. They are not just friends; they are a part of my life and family. With an illness this rare and this scary, you and I need all the support we can gather up. If you have MSA or know of someone who has it, please open an account on Facebook and type in the words MSA. You will be happy with the information you find.

Want to know more about MSA? I will provide you with some information below.

The Multiple System Atrophy Coalition
8311 Brier Creek Parkway
Suite 105-434
Raleigh, NC   27617 External link
Tel: 1-866-737-5999

Who discovered MSA in the beginning?

Click to access 379.full.pdf

Al and I fought through this wicked disease together. He continued to go to his Day Program from July 2013 through Halloween of 2013.

He had a Halloween party to attend to at the Day Program. He didn’t want to wear a mask, which I didn’t blame him or try to talk him into. Instead he picked out his favorite coca-cola clothes, and this is what he wore.

When he was dropped off back here at home. The bus driver helped him down. She then asked me, ” Has anyone called you from his classroom?” I said no, and she suggested I get a hold of them.

There was still time before they closed so I got Al safely inside and placed him in his lift chair. By now, Al didn’t walk anymore. After the strenuous therapy days he just didn’t have strength any longer. He didn’t walk alone anymore. He went from the single cane, to a four-legged walker to now total help from me. He could stand long enough to pivot for me to get him in and out of his chair or in his bed.

I called the Day Program teacher and was fortunate enough to be able to speak to her before she headed home. She told me, ” Al cried throughout much of the day, and if  he wasn’t crying, he was sleeping.”

Oh how my heart broke. Knowing that under any other circumstances, Al would have been the life of that party. To cry because for Al, pain on some level was always present. We were never able to walk away from it.

Stronger medications were used for pain and all of Al’s other medications were removed by the following week of the Halloween party. I knew things were very serious when the doctors decided to take away his heart medications.

I knew enough from my career training that the MSA was so strong within Al, the other medications he had taken to feel better and survive were no longer working. Now Al was only on a few medications. Very strong ones for pain in liquid, patch and tablet forms.

Oh how could I get through this? How could I remain strong and smiling for my brother when I knew his life was in jeopardy? By the strength of God, that’s how I did it and he held on to my hand tight and guided me throughout the rest of Al’s days.