Hello, my name is Terry Shepherd. I am the sister, caregiver and the person who is going to tell you the story of a very, rare disease called M.S.A/P. (Multiple System Atrophy/Parkinson). I will say this illness will make you feel as if you are riding the biggest roller coaster of all times.
Imagine your life has been exactly the way you want it. Graduate of college, nice family, a couple of kids, nice house, two cars. Nothing could be better than reaching middle age and having no regrets.
One day you wake up and you don’t feel the energy that you did the day before. You go through your routine you have built throughout the years; but when you get home, you feel you have to take a nap before you can go any further.
You discover that one of your hands has a slight tremor. You shake it off, by telling yourself you must be coming down with the flu or something. You continue through your days and weeks and notice these symptoms appear off and on, and then one day you trip over your own two feet.
Perhaps you will notice that your leg has begun to tremor, or maybe both sides of your hands and legs have tremors and you have more days of this happening. You sit up and take notice. You tell your spouse and a call to the doctor is made.
You go to your appointment and he leads you through the many questions about your history. He guides you through some special walking tests and he tells you, you have Parkinson’s Disease.
You go home with plenty of information and you think you have it all figured out. You probably believe that this is something you can deal with; since it is a very slow moving illness.
Each month something changes though. More tremors, fatigue building, and a weakness you never experienced. You fall to the floor. You are alright, but you dig out your information packets and you are astonished that these symptoms are moving at a faster pace than stated.
One morning you are eating your breakfast, and you begin to choke. The muscle in your throat doesn’t seem to be working like it should. Another call is made to the doctor and you are scheduled with a neurologist.
You arrive at your appointment, the discussions begin, and if you are real lucky, your doctor may tell you that you do have Parkinson’s; but you also have Multiple System Atrophy. So many physicians are not familiar with this illness, and it is very common to visit doctor after doctor, to walk away with each of you scratching your head on what in the world is happening.
What is multiple system atrophy?
Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the autonomic nervous system (the part of the nervous system that controls involuntary action such as blood pressure or digestion) and movement. The symptoms reflect the progressive loss of function and death of different types of nerve cells in the brain and spinal cord.
The average life span for this rare disease is 7-9 years. It is a rapid decline of the body’s ability to do things for itself. A few things to mention here that you may or may not be afflicted by are;
A. Choking, swallowing
B. Slowness in movement, stiffness
C. Impaired speech
D. Fainting, lightheaded
If you click on the link I provided above, you can read much more detail about this beast of a disease.
My brother had this illness. I was not only his sister; I was his primary caregiver also. MSA consumes the patient, so for the caregiver; it is a very tasking job and in the end will take up all of your time. You will spend hours like I did, researching MSA. You will join groups to find out more information.
All you want to do is understand. You want to do anything but stand by feeling useless, while your loved one declines monthly. In the end, my brother could not speak, eat, move, blink. In other words, his entire body shut down. It was the most devastating disease I had ever been a witness to in my medical career in 25 years.
The best advice I can give anyone who is living this through a loved one is;
A. Find something positive in every day. Make this a habit; you will cling to it more as time progresses.
B. Make a journal. Don’t do this just for yourself, perhaps at some point you can help others understand. I did this. I have a special site where patients and caregivers can come chat with me.
C. Always wear a smile when you walk into the room where the patient is. One thing Multiple System Atrophy doesn’t usually do; is touch the memory part of the brain. Don’t speak about death, or how the patient looks while in his/her room. They hear and remember what you are saying.
D. As communication decreases, do what I did. Learn different ways to talk to the patient. I used squeeze the fingers, blink an eye, chalkboard and chalk, flash cards. A very important thing I did as we were going into the last six months of my brother, Al’s life was, I memorized his favorite schedule. It becomes pretty important when the patient is bed bound, that you know which part of the Bible he/she likes to hear. Which programs are their favorites and what times they are being aired.
E. The last thing I want to say, but definitely, I have more to add, if I had the space to write is; show the love, show the family photos, listen, I mean really listen to the words being said to you. Save them in your journal or memory box.
This is a cruel illness. It doesn’t pick out the rich or poor, nor the color of your skin. It seems to hit those in their fifties; but has been diagnosed in those much younger.
There is still much to learn about this life shortening illness. Doctors and scientists are working on a cure every day. With your help of donations and sharing the information you have learned, we all can make a difference, and hopefully soon, we will hear the words; WE FOUND A CURE.
If you would like to make a donation, please visit the link below and follow the directions.
Here is a photo of my brother. He was born 05/03/1955
He had Multiple System Atrophy/Parkinson’s from the years 01/05/2008-03/24/2014
He passed away, 03/24/2014
I sure do miss you.