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.

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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

 

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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

 

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Daily Prompt/ One Word Prompt


Genie

Write a new post in response to today’s one-word prompt.

 

A Genie in a bottle. The first thoughts that come into play in my mind are Multiple System Atrophy patients, caregivers, families and myself. I personally felt, like a Genie in a bottle.

One illness, five little words, one doctor’s appointment can change everything from that day on. Watching little changes become bigger changes isn’t fun. Helping with falls, recreating meal preparations, setting appointments with various doctors, rearranging rooms, taking out furniture to make room for new furniture, interviewing caregivers, looking at any programs that may help off set expenses. This is truly a Genie kind of life.

Why do I say that? Simple, very few professionals have ever heard of this disease, which makes it difficult to get the help you need. There are improvements on literature, so your power becomes stronger with reading.

Getting insurance companies to understand this is a disease that needs to be covered is a task within itself.  I felt like the Genie in the bottle. I tried and tried, but the top of my bottle just wouldn’t pop off.

What is the best thing you can do if you need help but can’t find any? Join Facebook groups for Multiple System Atrophy. There are several.

This is one of the newest groups I created. A place to feel comfortable enough to speak your mind in private.

https://www.facebook.com/groups/374109256406780/

 

This is one of my older groups where you come to visit, be inspired and meet other families and patients.

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

 

This is a group for caregivers. It is an awesome group to find strength and answers in others who are going down the same path as you.

https://www.facebook.com/groups/168770156602557/

 

This is a group formed to learn more about Multiple System Atrophy.

https://www.facebook.com/groups/48942097968/

 

 

This is a group that I love. I found so much support here while my brother was still living. My friends from this group are still my friends today. A wonderful place to congregate.

https://www.facebook.com/groups/MSABuddies/

 

As you know by now, my birthday is this coming Saturday. I need still two hundred dollars to meet my goal. I am requesting a $1- any amount from you, my friends to help me reach my goal of $500.00. Can you help?

https://www.facebook.com/donate/566976957002931/

 

I wish this terrible, nasty, roller coaster ride of a disease on not even my worst enemy. Not only will it change your life forever; there will be times when you feel like that Genie in a Bottle.

 

 

 

 

 

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Could You Help Me?


https://www.facebook.com/donate/566976957002931/?fundraiser_source=external_url

 

My birthday is coming up on this Saturday, April 21. I don’t know how many of you followed me while I cared for my brother who died from a rare neurological disease, called Multiple System Atrophy.

I had been a caregiver for many years and never, ever saw a disease so ugly and demanding as this and I am not just saying this because my brother suffered from it. It took everything from him and almost claimed his vision. It left him a vegetable in a shell and was a very painful death.

For my birthday, I am asking you to donate a $1-any amount to help find a cure. I swear to you, you don’t want any of your family members to get this.

 

Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

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The Truth Was Known


Four years ago at this time, I was not sleeping
I was tired and weeping
My brother in pain
Nothing to gain
Unless you were God.
 
 
Tired of fighting but not willing to give up
Multiple System Atrophy was winning
Take me! Take me! I thought
As I sat there watching him breathe
But God knew.
 
 
His heart and mine touched each other
He couldn’t speak but we both knew
His time here as my brother was ending
He didn’t cry, so I did it for him
And God knew.
 
 
In five days you will leave me
You will find peace and I shall be torn
You will stand tall and walk
I will be planning your funeral
God has his plan.
 
 
I make sure you understand I love you
On the 24th, I will release purple balloons
I will celebrate your release from the pain
But dear brother, my void still exists
God knows my pain.
 
Written by,
Terry Shepherd
03/19/2018
 
If you would like to let a purple balloon off on March 24th, in honor of my brother’s release from Multiple System Atrophy, please share a photo of you doing so. Thank-you

Daily Prompt/ One Word Prompt


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

The word for today is; Incubate

verb
  1. (of a bird) sit on (eggs) in order to keep them warm and bring them to hatching

Can I exchange a bird and an egg for a person and a life? I consider what I did, in a way, incubating.

My mother passed away quite suddenly. She was a God-fearing, loving and kind woman. She helped open a Women’s shelter here in Warsaw. She and my dad used their own funds and bought an old camper. They gutted it and installed everything needed to make funnel cakes. They traveled to the small-town fairs and sold these goodies and donated all the funds, including the monies to purchase ingredients, to the Beaman Home. She helped people and never let on she was helping them.

https://www.thebeamanhome.com/

She never smoked. I heard her swear once and it was only the word, shit. At the age of sixty-two, she had a sudden Anneurysm.

https://www.webmd.com/brain/brain-aneurysm#1

None of us could help her. She passed away.

I also took care of my dad who had Multiple Myeloma and Leukemia with a little bit of Parkinson’s mixed in.

https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378

https://www.mayoclinic.org/diseases-conditions/leukemia/symptoms-causes/syc-20374373

His illness lasted about one year and then he passed. I did all I could, but God wanted him worse.

Then there was my brother. A mentally challenged man who had one heart attack and then Multiple System Atrophy hit him big.

Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

(It is kind of creepy and a little scary for me to read back that definition of MSA. I too, have a neurological disease. My doctor can’t decide if I have my brother’s illness or not. He says in time he will be able to tell. My diagnosis is; Parkinsonism/Dystonia/Ataxia. You can probably understand my fear.)

When my brother had this terrible illness and on top of all the other stuff he had went through, I decided to incubate any time we had left, which ended up being seven years, the general amount of life time on this particular illness.

I paid close attention, more than my dad I think, to every feeling, need and want he wanted. I spoiled him rotten. I made sure he had the best doctors we could find and afford. I fed him healthy foods. I told him many times how important he was to me and how much I loved having him for a brother.

I was drained and tired and physically in not the best shape when he passed; but I wouldn’t trade a moment. I have beautiful memories of his and my time together. I shed tears still, but not as often. He will be gone from my vision four years, March 24th, 2018. I feel like I incubated and watched over his days and nights until he was ready to be born into God’s hands.

March is Awareness month, and I am still  praying for a cure. Purple is the color that represents Multiple System Atrophy. The guy on the scooter with the big smile? My brother. The banner at the bottom is where you can call if you are in crisis.

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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.Al_his_life_and_MSA_Cover_for_Kindle

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

terry

That’s My Dream My Dear Wife


You see that mountain over there? That’s my dream. That’s where I put my faith on every night as I lay my head down on my pillow and pray.  Every morning I wake up and look down at my body. Nope, nothing’s changed. I still can’t move.

I look at my legs and they feel frozen in the bed. Sort of like being cemented to a bed post. A tear drips from my eye as I try to move my fingers; but they won’t. My nose itches, but no one knows it.

I look up and I see your smiling face enter my room. I see the glistening in your eyes, but you won’t admit you have been crying. You gently wash my face and hair. You turn me over and wash both sides. You do all this with the gentleness of love. I love you so much my wife. I so wish I could tell you. I will not complain with groans or moans. Will this help you see how much you mean to me?

You shave me the best you know how. You sprinkle talc on me and try to erase the smell of this illness. You leave my room and I see you once again wipe a tear from your eye. You enter with my breakfast. I don’t recognize my favorite food, eggs and bacon. You have a cup with you and I can see it is brown, but I don’t see the steam rising. I know you have pureed all my food and added a thickner to my coffee.

You turn the television on for noise in the background as the silence is thick and our thoughts mesh into one; but neither of us want to admit we both know I am dying. I see the effort you make into each day. Going about the business of what I used to help you do. Paying bills, getting groceries, babysitting the grandchildren. Above all; you don’t forget me. You always check to make sure I am dry and want for nothing.

When you make sure I am going to be fine for the night, I hear the bed springs as you collapse into bed at night. This is when I turn to my mountains. I pray for a cure. I pray for my release so that it may release you, my love. I appreciate all that you do; but you should not suffer from my lingering onto a nothingness.

I love you, my dear wife. You are the best.

 

 

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Multiple System Atrophy Awareness Month. PLEASE HELP US


We, the patients, caregivers, families, doctors, scientist, volunteers, medical clinics, doctors offices, Neurologist, all need your help.

I KNOW from experience this illness sucks big-time! I know the exhaustion families and caregivers go through while caring and watching their loved ones. I KNOW the fear that creeps into our hearts as we ask so many questions that answers are not there for. The rarity is here. We need help. We need answers. We need funding and we need it NOW.

PLEASE HELP, PLEASE DONATE A FEW DOLLARS, EVEN A STARBUCKS COFFEE’S WORTH.

PLEASE DONATE TODAY IN MY BROTHER’S HONOR AT THE LINK BELOW.

https://www.multiplesystematrophy.org/fundraising/donation

 

 

 

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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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