Doctor’s Visit

Today I had a doctor’s appointment. It was a check-up from the labs I had drawn yesterday. We go over the report and he makes suggestions as to what I can do to help myself.

All the numbers on those LD’s etc were in normal ranges. I was happy. My sugars had come down a little with having added five units of insulin these past few months but he wants them to where they were several years ago, I think, so he added five more units of insulin.

It was my turn to make suggestions this visit. I had a full memory list of what I wanted to ask but got shot down on all of my questions. He explained why this and that and I understood what he was saying, until we got to my last question.

I told him about my Dystonia causing my arch to hurt most days from my toes curling. I explained that my weeble-wobble was becoming more of a daily issue now. He said, there wasn’t anything to FIX ME.

I guess I knew it inside from belonging to so many support groups on FB. What his suggestion was as he was opening the door to leave was; “Probably time to consider using a walker full-time and get a wheelchair.”

I said nothing. He said nothing. He gave me a pat on the shoulder and smiled then left to see the next patient. I stood and stared at him as he walked away. It has been four hours since that talk and I still don’t want to believe it.

I told one of my friends about it and expressed I was not ready to sit in a wheelchair, even part-time. They asked me, “Falls and hospitals or safe and at home?”

Sometimes life just seems a little too warped. It’s like going to the fair and walking through the glass house. Did you ever do that? You can look skinny or quite heavy, short or very tall. It’s a fun way to waste some time.

In reality though, I am always being forced to follow the directions. Well, I guess you could say I am not forced but then again if I don’t; I could end up in the hospital or evicted, or in jail.

We follow many directions don’t we? We thought when we turned eighteen those days of rules and listening to others was over; but far from it.

I have to watch my salt intake. I know every carb in most foods. I know how much sugars I can afford to have without hurting myself and what foods not to eat. I know the directions on taking my pills.

I am following the rules of paying bills on the date required.  I am not told when to go to bed but I know what I will be like in the personality department if I don’t get enough hours for me.

I still can’t eat ice-cream when I want. I can’t, I can’t, I can’t. Wait a darn minute! What about the “I can’s.” Now there’s a different way to look at life. I have the freedom to choose to follow the directions, keep my body as safe as possible.

I have the choice of believing in dreams, goals, God, my children. I have the choice to fall in love with whom I want. I can choose to get up in the mornings and be thankful I am alive or lay down and give up.

Whoa! This sounds much better. It’s a nicer picture mentally, don’t you think? What about you? Do you realize how many choices you are allowed to make each day?

 

Broken/ The Daily Post/ One Word Prompt

https://dailypost.wordpress.com/prompts/broken/

The word for today is Broken

That’s the way my foot feels; broken.

I have Dystonia. You wonder what that is? It is involuntary movement of muscles. Mine is at the moment in my foot. I have seen it do it before; but then it left. This time it has remained for the sixth day.

a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.

Most cases of dystonia do not have a specific cause. Dystonia seems to be related to a problem in the basal ganglia. That’s the area of the brain that is responsible for initiating muscle contractions. The problem involves the way the nerve cells communicate.Sep 11, 2016

My shoes that I feel most comfortable in are not working right now. When I get out of bed, the pain is quite intense. When I lay down at night, my toes curl under, just like in the photo above.

I have called my Neurologist and am waiting on a prescription for muscle relaxer. I hope it works.

I have a wonderful doctor that immediately diagnosed my brother with his rare disease; Multiple System Atrophy. Since I was his sister, I was able to get an appointment with him for my diagnosis of Parkinsonism/Dystonia/Ataxia.

He is a neurologist of science. He is very smart. I recommend him for any neurological disease that you are having a difficult time getting diagnosed.

https://doctor.webmd.com/doctor/thomas-curfman-md-66437503-4aac-49bb-8bef-611a300832b7-overview

 

 

My Prayer of Hope

My Prayer of Faith.

 

Lord, you know of my health
And only you know when it will end.
You placed me here for a reason.
I am just sometimes so scared.
I can follow the crowd,
Or I can lean on you.
You, almighty one
Know what you
Are going to do with me.
While I am here
Visiting on earth,
Please allow me
To share what
Gifts you have given me.
Thank-you for listening God.

Written by my feelings,
Terry Shepherd

 

 

 

 

 

 

I Want to Live, Mentally

When you are younger than I and live a “normal” life, you may not be able to get the picture in your mind of my story. If you are disabled or elderly and confined to your four walls, you may understand perfectly.

I get so tired of the silence here in my room. I have the TV and the radio and my cellphone. After a while, those become concrete statues also. After, I run out of things to occupy my mind, I will grab my walker, go downstairs and check my mail, and if I am fortunate, I will find other people sitting on their walkers or in their wheelchairs, congregated and chatting.

I desperately don’t want to participate in this group, but I want them to save my life on the other side. I sit down on my walker and I listen and look. I look at each face, mentally comparing it to mine.

I check out their clothes, their  hands, their hair color and styles. I am not snoopy or better than them. I am comparing them to my own body. Does that make sense? I listen to them talk about the puzzles they worked on that day, what they had for lunch. Sometimes they talk about how they didn’t make it to the bathroom in time.

There are times I laugh with them, and if I can find something similar in my life that I did that day; I will add it to the conversation. Other times, I come back to my four walls and feel so depressed and almost in tears.

You may be asking, why did she move there, because she knew what type of people lived there.  That would be a good question and the answer is; I didn’t have much choice. Opportunities didn’t come in time and I needed a place to live. I didn’t want to move out of where I had resided the past year, but things happen, right?

This place worked because I am on disability and almost a legal senior citizen, but my mind is not. With having my illness, I should be so thankful for this place, but having this illness forces me to realize that life is shorter in quality of life, and therefore; I want to live.

I am not mentally ready to put puzzles together. I am not mentally ready to sit on my scooter all day or in a wheelchair. I fight back tears when I look around me and all I see are people just like those in the photograph.

I want to laugh. I want to run. I want to play. I want to live life before I am wheelchair bound. Seeing those already seated in my waiting spot, makes me ill. I want to pack my bags and hit the road, never looking back.

Of course, I want a lot of things, like most of us. For me, I want to rid this illness. I want to walk by myself without aide, but some things I have to face, I can not change. I want to change what I can change and learn to face that some things won’t change.

Does any of this make sense? I have lived over half my life and I made mistakes and I learned from some. This latter part of my life, I have nothing to lose, but to gain laughter, memories and less stress. This is what I dream of and yearn for.

I never thought different about environment except in the form of how it causes illnesses, but I now know that your every day living is also effected by what you see in front of you day in and day out. I have got to make changes. I want to live, mentally.

Be Grateful, Life Could be Worse

No matter how hard I am trying to stay positive, today is not one of the good days. It isn’t my  health; but yet my health plays a giant role. I am not unique; there are many in my situation. I can’t beat it; neither can anyone else, unless they know something I don’t.

By now, I bet your curiosity is up. Well, I will tell you. If you are disabled or living on the government’s assistance, you can smile and think,∴yes, I know what she is talking about now.  Yep, I got it.

Now don’t get me wrong. I am thankful for the roof over my  head. Heat when I need it and for being alive and safe, but I almost wish I lived with a roommate where help was more available. When you lean only on yourself, there aren’t many doors open. My problem is I pay the least possible in what I find I really would not like to live without, and this mainly includes; a way to reach the outside world or EMS, or talk to my kids, the cheapest of ways to be able to use the internet and the cheapest and lowest way of having sound within these walls.

Of course, there is auto insurance and other bills that deem important. Providing food is a task each month. I drive mainly for visits to the doctor, or visiting family. I guess it doesn’t really matter does it. The point is, everything seems off balance.

Not enough to live on and you know why? Because I made the choice to stay  home and raise my children instead of working, therefore not giving me enough credits to get a nice monthly check. Things will never change. When I reach 65 I won’t get anymore in my check.

This is when I hate Parkinson’s with a passion. It stops me dead in my tracks. I can’t get work. If I get work, I lose my medical insurance I carry through the government, or my rent raises so what’s the point of working? You can’t win over the system. I can’t work 40 hours, I can barely stand and walk for  more than a little at a time. Part/time work threatens a loss of help, which could cost me more dollars in the long run, then of course there is the issue of my balance.

So I would not have insurance offered by the company and would be forced to purchase my own. Have any idea what insurance purchased privately cost for a diabetic patient? I do, way too much.

I am so down in the dumps right now, because I know this is the way it will be until I die. If you have a job; be thankful. If you are dead tired, sleep. If you don’t have much money after paying bills’ thank God they are paid, next month is going to be different. If you don’t have to worry because the cupboards are getting bare, it will be alright, you have another paycheck coming in soon.

I guess what I am saying is; be grateful, life could be worse.

Hello Dear Brother

Hello Dear Brother

I ride your scooter, you probably know
I use the walker, like you did bro.
I have a cane as you did too
Sometimes dear brother, I see me in you
You had an illness called MSA
Maybe I have it, some docs say
I have your Parkinson’s, no doubt of that
I tend to fall just like your past
People say this can’t be passed on to me
But my symptoms are very hard to flee
If you hadn’t gone to heaven so soon
We could share these scenes without the doom
I’m going to see your neurologist
The one who gave the song of bliss
He’ll ask me questions that he asked you
I’ll remember your answers that rang so true
I sometimes feel better because I know
You’re walking with me, every step I go
I feel so close to you these days
Because I resemble your MSA ways.
I love you brother, stay near me now
Because it is possible I’ll have to take that vow
To keep strong, and hold onto my faith
Just the way I made you when you paved your way
I’ll ask our God to guide me through
Just like the way I prayed for you.
And if the day comes I have to leave
Keep your promise and save a seat for me.

Written by,
Terry Shepherd

Crawl Into Bed

I don’t know why my brain insist I wake early in the mornings. Being retired means sleeping in. Perhaps my brain thinks I am still a young kid. I know that my mind and my body do carry on different conversations.

I rise before the daylight shines. I force myself to go back to sleep, only to awake an hour later. I hear the birds singing, which I do love to listen to. I sit up in bed and look around. I ask myself, what am I going to do today? There is many hours that lay between crawling under my bed covers again.

Part of me feels a peace. No stress slamming me is a nice thing. I think it is more about being tossed out of my comfort zone. That seems to be an issue with me ever since Al passed away.

I got used to being in demand. Al would honk the bike horn sitting on top of his bed side table, and I would go into his room and do what I could to help him. I remember him requesting me to start the movie The Christmas Story, over and over again. Still today, I can’t watch that movie, but some day I will.

I remember him asking me to help his pain. There were baths to give, bed sheets to change, meals to fix, feeding him, cleaning him, talking to him, watching TV shows together. He took a lot of work, but you know what? I didn’t mind at all. I knew he needed me.

Perhaps I have this illness that I am not aware of, which has a name, but has not been assigned to me yet. I bet it is called, Stuck in the Middle. Somewhere between seeing a future and seeing the past.

I talked to my daughter briefly last night. I got the feeling that she and many others believe I should be on cloud nine, as I am now in my own place. I am able to make my own decisions, go when I want, return when I choose, but something is missing.

I still feel weird inside. The truth is, I think I am done. I took care of so many patients and I took care of my dad and brother. This was my purpose here on earth. Now, I can’t work because of this Parkinson’s thing. Feeling off balance on my feet is a big issue in my life.

It has forced me to become part of the system. It forces me to remain in one spot. It keeps me from becoming better in the finances department. I feel like I don’t do anything but get through each day. I wait to crawl in bed.

I miss the past, I don’t see a future. I want it over. If I can’t have a better income, if I have to wonder where my next week of groceries are coming from, I am not interested. I know that sounds hmm, cold? uninterested? I guess it does, but these are facts I live with daily.

I have lost my purpose. Yes, that’s what it is. I want what I can’t have. I want my kids and grandchildren close to me. I want to be needed again. I think about volunteering at a hospital, but right now, those patients seem like strangers to me.

I do enjoy my camera still. I do love my painting, but to be very honest, the motivation is gone. I hate having to force myself to want to do these. I wish I would change. I can come out of church and be so happy that I am alive. I see light where there was darkness.

I am still loving helping the MSA patients, but I wish I could help in person, rather than through a black screen and keyboard. I still love writing poetry. I can see that I still enjoy some things in life, and this is a good thing.

But what is wrong with the rest of me? Why in the world would someone, anyone want to be stuck in neutral? I don’t know, I don’t get it nor understand it. I will get through the day. I will putter around my apartment, and then I will crawl back into bed.

I Am Still Around

Breeze whispers through my hair
As I sit on our favorite dock
A smile gently unfolds around me
As I remember the six oclocks.

It was here we said I love you
It was here, our kiss began
It was here you took me gently
By clinging onto another’s hands.

Now a year has passed between us
We said goodbye to summer gone
We said we’d write each other
And never forget our song.

The time ticked by so slowly
Then sped it up my months
I’d give anything my darling
If we could one time more, just touch.

Written by,
Terry Shepherd

 

I don’t know what is wrong with me. I have self-diagnosed for so long. I went to the doctor today and learned that exercise programs are out for me now. I can do yoga, he said, as long as I go slow at it.

My Parkinson’s is advancing just a touch. Today I spent a few times hugging the wall, as my balance is off more today than usual. It seems anything I place in my  hands, makes my hands tremor. I can barely write my name now a days.

I have spent too much time going back to the past and reliving my better moments. It’s fun and yet makes me cry, as I realize age is gaining on me.

I was asked if I wanted to be placed on depression pills, but I am afraid I will sleep all day, so I said no for now. I swear I can kick this. Perhaps Spring will make a difference. The smell of fresh air, seeing green grass again, being able to go out with my camera again.

To be quite frank, I never dreamed losing my brother could place such a deep pit in my heart. I can go to my son’s house and visit, and I am so  happy. I go home and within a day, I am sad again.

I hate this my friend, I really do. I have always been told I am a survivor, so I will survive though this. I have too much to live for. I know God isn’t done with me yet.

I am going to go on U-Tube and look up Yoga classes. The doctor said it will help my balance, so why not give it a try, right? I also learned that Parkinson’s can bring on teary eyes and sad times. Thank goodness I do have good days.

Well, I just wanted you to know I am still around. I have been writing a lot of  poetry but not near as much short stories. Things have to get better, they must.

 

 

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.

 

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.