My Story on Multiple System Atrophy/ Parkinson’s


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.

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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.

http://www.ninds.nih.gov/disorders/msa/detail_msa.htm

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

E.Bladder control

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.

Differential Diagnosis

 

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.

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al-and-rhino-31

 

It Is Alright


death 2

Walk into the light

A subject matter, most don’t like to think or talk about. I know I was one of those people. Life is for living, not pondering on death. My daughter has told me a few times, that she is tired of hearing me speak of this matter.

I truly understand her point. Who wants their work, or play time interrupted by such morbid thoughts? Who wants to actually think for a second about losing a loved one?

The problem is getting through and over death. When my father became ill, and I started taking care of him; death was not in my vocabulary. I knew, without a doubt, that modern medicine, a loving daughter taking care of him, and God, would never allow death to enter our lives.

When my mother passed away, it was a true shock. She died suddenly after being a vibrant, healthy woman her entire life. I have lost all of my grandparents and many aunts and uncles, and a few friends; but it seems this was put into an entirely different category.

When a spouse or parent and my own dad died, I wonder even today, after nine years, is he really gone? Can’t I go out and see him or call him? When within a week of laying dad to rest, my brother had his first heart attack, it began to become a reality, that death was real.

I didn’t go into my brother’s illness with the same outlook or hope that I had with my dad. Number one reason was I had been awakened to the fact death could happen. Number two reason; MSA is incurable. What a nasty word that pops up in our dictionary.

My goal for my brother was to get involved. By this I mean, be involved with all physicians who could help or understand. Be active in all Facebook groups that held information and hope about Multiple System Atrophy. To speak to anyone and help them to understand what MSA is.

I did this and I still am active in these groups. There will be a cure, I have no doubt, but in the mean time, some will lose their battle, and join so many other warrior angels in heaven.

There are so many diseases with hopes for a cure. I will never understand why God doesn’t fix it; but I believe he has his reasons. My theory is, the good person living here on earth is needed by God more desperately, than we do.

Because I have suffered physically and emotionally from the tragedies of caring and watching my family pass away, I want to speak to you on a personal level.

It is alright to fear; but place that fear in God’s hands. It is alright to cry; it releases stress from the body. It is alright to reach out and pray; even if you have never prayed before. It is alright, to begin visiting loved ones more often and sharing the good things about  life. It is alright to carry hope, even though you had no reason to hope before. It is alright; to accept a friendly, helping hand. It is alright to grieve; by spending time alone, calling a friend, weeping many times. It is alright; to forgive yourself, family, friends, and by standers. It is alright; to yell, scream in desperation.

Death is not a fun thing to go through; but it is a necessary task we must face. It is a part of life. I wish I would have seen the words in bold prior to losing family and friends. I may be much further along today in my healing.

 

angel

 

I Feel Like the Odd Ball


I fell a few days ago for the first time. My gait has been bad for some time, and always feel like I am going to fall; but don’t. I didn’t expect it and I didn’t get hurt either; so I was lucky.

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Today, I decided to make some bean salad and potato salad. I had previously boiled the potatoes last evening, so all I had to do was cut, dice and put together. I boiled the eggs today and after cooled; I made the two dishes. I thought they were perfect for this hot, humid day.

I suppose I was standing for about half an hour or so making these two edibles, when suddenly, I felt weak and the Parkinson’s tremors kicked in. Fortunately, I was almost complete with my task. I cleaned up everything and put the dishes in the refrigerator.

My heart suddenly sped up and I knew if I didn’t lay down; I was going to be on the floor again. At this point of this disease, I have a pill I can take to try to calm the tremors down, so I grabbed a bottle of water and swallowing the pill; I laid down with the fan blowing on me and waited for it to take effect.

While waiting, my mind drifted back to my brother. I usually think of him daily, along with my parents; but some days, I think of Alvin so hard, my heart aches terribly and tears well up.

al-and-rhino-31

I thought back to how he ate so much sherbet the last week or so of his life. Oh, he didn’t eat a lot at one time; but this is what he always wanted. A few sips, and he was done. Multiple System Atrophy/ Parkinson’s had really done a number on him by then.

He could barely swallow, speak, he couldn’t move at all. It broke my heart watching him go from a 285 pound, smiling, young 59 year old man, to a withering, small, 145 pound shell. This is where today, I sometimes feel like the odd ball.

His illness brought out all the compassion, empathy, sympathy and every other emotion a person can carry while taking care of him. It never left. I still carry it with me. I believe this is somehow a small reason that I changed, and will never return to the Terry I once was.

As I lay on the bed, and I listened to the petty talk on the TV show, as I thought of all the people glued to their cell phones, or computers, or whatever item they can’t be without; I realized, it is cold to me.

There is nothing for me without being able to use these strong emotions; that makes me feel content. There will never be another emotion that will stir me up more than helping, sitting, watching, or caring for a person who needs someone. I have a gift, I believe.

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I can feel what they feel. A sense of desperation, a feeling of hopelessness, sorrow, tears, and yes, even sharing a giggle or two. It dawned on me as I was laying there waiting for the medicine to kick in, that this is why I see things so different today than before Alvin got too ill. Between he and God, I learned many lessons. Now if I could just figure out how to use this to my advantage, and yet have my tremors hold me up, I may feel content once again in life.

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Fearless Caregiver Contest, Please Vote For Me, Only Til 12/5/13


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Al and Rhino 3me, september two thousand thirteencaregiver