Chapter 29

Each day Al got weaker, not only in body but mind. He was becoming confused. He complained a lot of not being able to see well. Twice in six months I took him to see his eye doctor and I heard the same thing each time.

The muscles behind the eyes were not able to focus as well as before. This was causing poor vision. With Al’s other medical problems there was nothing the doctor could do for him.

I could do something for him though and I did. I invested in a much bigger television for him. Every Sunday that I can remember,  Al  read his Bible, so I purchased him the largest print Bible I could find.

My heart just melted when I received the biggest smile from him. He could read it and he loved it. Al was a very routine guy. I think most of this came from his mentality. He had grown up going to church and Sunday school on Sundays so when he could no longer go to church we both began to watch Joyce Meyers and Dr. Charles Stanley on the television.

Any other day of the week he showed no interest in God. With the illness quickly progressing I knew that it was time to try to change his view on routine. I explained to him that Joyce Meyers was on the TV six days per week. I told him, ” Bud, you even have choices. You can watch her in the mornings or in the evenings or both. Dr. Charles Stanley comes on twice on Sundays here. You can watch him in the  morning and in the evening.”

He seemed to like that idea and so each day I would turn his station to either him or her and gradually he also began to read his Bible daily. I really didn’t have that much to do with all of this grand plan in his life. Al was able to read his Bible for a couple more months, and then I began to read to him since he could no longer focus. God helped life to become tolerable. I began to do something I had never thought of to do before.


I was determined that each day I would find something good about it. Whether it was seeing the sun peeking through a cloud or just watching the squirrels in our yard scrambling to find a piece of food, I would notice and I would smile.

By now, Hospice was involved. The waiver that had helped Al to come home provided help for me to care for Al. The illness was so strong that for a few months before Al passed away, I only went outside the house once a week and that was for groceries.

It is truly amazing when I look back to just a few months ago and see how much God had a hand in our lives. I had lost my father back in December of 2007. I began to care for Al in January of 2008, after his heart attack. I never began the mourning or healing process from our dad passing. I went straight to caring for Al.

It was a whirl wind of a life. It seemed that I had lost many friends from being inside so much and being out in the social world had vanished, but God sent angels to me and Al. Our caregivers were wonderful. Gina,Stacy and Faye were so good to Al and they cared and listened to me and held my hand while I cried.

Hospice came twice a week up until the last few weeks. They seemed to care about Al so much. His favorite nurse that came, Al had known for so many years. Hospice had many patients to handle, so they were never here long enough for me, but hey, I wasn’t the patient, but I felt like some days I was cracking up from his pain.

The Hospice always made sure Al had all the supplies that he needed. One thing about MSA is; it doesn’t sit still. The stages move very quickly. I would just get used to doing things one way, and boom, I was having to learn something new or a new way of handling the situation.

Al suffered from catheter issues, almost being blind. He went from feeding himself, to using heavy-weighted silverware, to finger foods, to me having to feed him. Then we went to mechanical soft diets, then to foods that consisted of soup, ice-cream or puddings.

While the MSA was moving forward and I could see so much on the outside, his insides were worsening also. He had big issues swallowing. He would try to swallow but the muscles in the throat were not working properly, so choking issues became huge. This is why the constant change of foods.

Being on such high doses of pain medications caused terrible issues with constipation. Every day he or I was asked if he went and more often than not the Hospice nurse would have to help Al to clear the bowels.

Al’s body became stiff through time. His limbs would not move with his help. Somehow the tremors always were able to move though. I remember once for a short spell Al wanted to get out of his bed. He had been bedridden for about a month at this time.

He begged and begged. One day when the caregiver was there she and I decided we had to show Al that he could no longer get up. She and I got on each side of him and sat him up on the edge of the bed.

All of us were scared as we watched Al’s body flop around like the commercial on TV where the fish is out of water. He had lost all control. Control of his urine, bowels, eating, just about everything he could ever do, he could not now.

She and I quickly laid him back down and got him covered up. I asked him, ” Do you still want to get out of bed?” He said softly, no, never again.

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.