This Could Be You

You have been a part of the family your entire life. You know which ones you look forward to seeing and which ones to hide from.

Year after year you spend holidays together. You know the routine, then one year; everything changes. Uncle Ray passed away. Aunt Betty is now in a nursing home.

The cousins you played with are all grown and go to their own holiday gatherings. The big, oval table looks smaller. The laughter not quite as loud.

Some of your favorite foods are no longer there. Yes, life certainly changes doesn’t it?

Then the next year you go, a bigger change than ever has happened. Your favorite Aunt Sue is different. You don’t know what happened exactly but something sure did.

She repeats herself over and over. She wanders the familiar house like she has never been in it before. She walks up to me and ask me my name. I say,” You know my name. It’s Bill. Remember? You used to call me little Billy.”

She looks at you and nods her head. She wonders off and in less than ten minutes, she is back, asking you the same question, “What’s your name?”

You soon find yourself walking to another room when you see her coming. You feel guilt because you love her so much, but my gosh, she’s asked you five times who you are.

By the end of the day, you learn that she has Alzheimer’s disease. You have heard of it but don’t know much about it. When the holiday is over you return to your own home.

On the next free time you have; you research this disease. You find ways to interact with your Aunt. You give a donation to the foundation to help find a cure.

On the next holiday you seek her out. You go to her and put your arm around her. Looking her straight in the eyes you tell her hello and how much she has meant to you all these years

Written by,
Terry Shepherd

This disease can strike about the same time you are thinking about your retirement years. It’s a sad disease to watch and you can feel very frustrated and emotional watching your loved ones go through it. The best thing to do is not get angry. Don’t argue with the patient with this illness. You will lose.
Give a donation and help find a cure.

 

 

https://www.alz.org/

God Hears the Lonely Heart

It was a few years back, in fact, it was about a month after my brother passed away from Multiple System Atrophy, that the biggest void ever; entered my life.

I was suddenly alone. All the caring, love and worrying and praying I had done was over. What was I going to do now with my time?

I prayed for what seemed long, lonely weeks, for something to fill my time, then God answered in the perfect time. He placed the idea of photography in my mind and so the hobby began. Thanks to my best friend; I was able to get a nice camera.

I have improved over the years. I still have lots of improving to do. I am proud of what I have accomplished and am looking forward to what else I can do. Here are the last two photos I took.

I hope you enjoy looking at them as much as I enjoyed capturing them.

Inner Strength for Terminal Illness

Strength For Terminal Illness

When we wake-up, there is pain
When we lay to rest, there is gain
Be it middle-aged or an illness
if we don’t try; there’s no bliss.

It’s easy to lounge in our P.J.’s; I swear
Forget about make-up and brushing our hair
But don’t forget; God gave us this task
He knew we could do it, without wearing our mask.

Everyone has a gift, you were given at birth
Some can be speakers, others teach this earth
Those with terminal illness are most special to me
For their strength bubbles over, for all of us to see.

Written by my feelings,
Terry Shepherd
April 18, 2018

 

Ever Wonder Who I Am Looks Like?

Here I am. I am the writer and photographer behind this blog. I live in Warsaw, Indiana. I have three grown children and I think, 11 grandchildren. I was a caregiver and traveled throughout Indiana for many years and then became a private caregiver for elderly and Hospice patients.

Now I have Parkinsonism/Dystonia/Ataxia. I live in a retired community building and spend my time painting, or being the photographer for the social events here. Yesterday, I was nominated for Secretary for the next year. In April I will learn whether I was voted in or not. I really don’t mind if I lose or win; I was thought of.

I am pretty quiet, but at times I can be a real chatterbox. I love to take my scooter or car and go to the lake and take photos. I love campfires, seeing the smiles on my family’s faces and making memories.

I am an Advocate for a rare illness called; Multiple System Atrophy. I have a Facebook page called Multiple System Atrophy through a caregiver’s eyes, where families, patients and caregivers can view postings that hopefully bring a smile. You may chat with me about questions you have about this rare illness.

https://www.facebook.com/MSAfeelingstressed/

I have published two books and am writing a third. The first book is called Dahlia. It is an uplifting story about never giving up. The second book is a general based book on Multiple System Atrophy. These two books can be purchased through Amazon or Kindle. The third book I am writing is in no holding back the truth about Multiple System Atrophy. Many readers let me know they wanted to know more. I had held back because it is such a horrifying disease; but in this third book, I will be spilling my guts. I think the name of it will be, A Hell of a Disease. We shall see if that sticks.

Well, that about does it. If you have questions about who I am, talk to me.

Suppose, Imagine, Pretend, Tell, Despair/MSA

MARCH IS MULTIPLE SYSTEM AWARE MONTH

GO TO MSA.ORG   LEARN, GIVE, HELP FIND A CURE

DEDICATED TO MY BROTHER WHO DIED FROM THIS TERRIBLE ILLNESS FOUR YEARS AGO THIS MONTH.

 

SUPPOSE, IMAGINE, PRETEND, TELL, DESPAIR

Suppose one day

Things don’t feel right

Tremors or falls

But able to function.

 

 

Imagine going to the doctor

Expecting to hear familiar words

When nothing makes sense

You are condemned to death.

 

 

Pretend nothing is happening

Keep all to yourself

But daily chores

Are becoming a burden.

 

 

Tell all who love you

No one understands

They see you acting weird

They fade from your day.

 

 

Despair  surrounds you

You feel like giving up

You pray for a cure

You scream to the world.

WRITTEN BY,

TERRY SHEPHERD

 

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I Have Nothing to Live For

I have nothing to live for. These were the words that Thelma whispered over and over.

Thelma had Alzheimer’s disease. It had attacked her many years ago, and if I know anything at all; it is that she shouldn’t have to suffer much more.

Her children and grandchildren used to visit quite often; but once Thelma couldn’t remember who those once familiar faces were, visitors strayed and came rarely.

I am Phil. I am her caregiver. I received a call one day from the agency I worked for. I went in for orientation and learned that family had decided they had had enough. If mom/grandma was going to forget who her own family was, then screw it. Someone else could take care of her.

It was a cloudy, brisk day, the first day I entered that home. The drapes were closed. Artificial lighting was all that could be seen. There she was, sitting in a straight chair over at the kitchen table. She didn’t say a word that I, the stranger, had just let myself in with the key given to me.

I walked over to her and introduced myself. She stared ahead, rocking back and forth. She held an old rag doll in her arms and she rocked back and forth on her chair.

I studied her for a moment, as if trying to suck in all the life that once lived in these walls. I said in a whisper , “What a shitty thing to do. I bet this woman loves her family. Instead of learning about the disease and being here in these last months, they throw her off on someone else.”

Day after day, I returned for my normal shift. I tidied the house, did her laundry, fixed her meals. I set up a Christmas tree and asked her if she would like to help decorate it. ” I have nothing to live for.”

“Yes you do Thelma. You have plenty to live for. It is almost baby Jesus’s birthday. Don’t you want to help celebrate his birthday”?

She stopped rocking and her eyes turned to my face. She said nothing, but clung tighter to her doll. I reached out my hand and placed an ornament in it. With my help, she stood, and I guided her to the tree. She looked at me and instead of seeing nothing; I saw a tear, then two.

I placed my arms around her and gave her a gentle hug. With my help, she hung the ornament. There was silence in the room so I started humming Silent Night.

She turned to me and said, “Baby Jesus, Nancy, Rita and John. I asked,” Who are Nancy, Rita and John, Thelma?” She looked me straight in the eye saying, “Children, they are my children. I have nothing to live for.”

Written by my feelings,
Terry Shepherd

#Education
#Alzheimers

 

Angels

I am a short-story writer and a poet. If you would have an interest that you would like me to write about, please let me know.
I am now going to write about a topic on “Angels”. This idea comes from
Maria.

For months, Sherry was prayed for. She came down with an illness that not many doctors knew about. Sherry fought the diagnosis and continued to live her life on the wild side.

She drank and did drugs. She stayed out late at nights and often brought home strangers to keep her company during the nights.

Time flew by and so did the symptoms of her diagnosis. It got harder for Sherry to live the way she chose; but she continued the best she could.

There came a night when she left her familiar bar. It was late and had been raining for some time. When Sherry reached the wet pavement of the parking lot, her vision went blurry and she fell. She cracked her head hard.

While she lay there, three men came up and roughed her up and stole her purse and belongings. She couldn’t fight. Her mind was groggy. Her head was bleeding. She slipped in and out of alertness.

She sometimes thought she saw angels flying around her head. They were so beautiful, she thought. Light as air, huge, white, delicate wings. Then she would become alert and feel her pain.

What seemed hours, but less than a half-an-hour, the sirens were heard and soon she was lifted into the EMS. The ride was quick. The attendants were giving her oxygen, and had poked her arm with a needle. They were talking among each other and into speakers of some kind.

She was taken into the ER and placed on a clean, white table. She heard the men talking. “I don’t think she will make it, but let’s start a line on her. Check that blood pressure. How’s it doing?”

She closed her eyes and saw the most beautiful light. There were those angels again. She smiled to herself, as the angels swooped down and carried her home.

Written by,
Terry Shepherd

 

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.

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.