Sometimes Others Just Don’t Get It

Am I crazy?

Lazy or just plain dumb?

Should I return to my crib

And suck back on my thumb?

Sometimes a human can toss a knotted-less rope

My hands are too slippery and I miss that chance

To make others understand

I don’t want to sing to your dance.

What were the right words

To say unto you

That you may hear my truth

In all that you do.

So many others hit walls and are stopped

They try explaining their feelings to a non-ticking clock

We return to our homes and we wish they’d live in our shoes

I wonder how they’d feel and what would they do

.Invisible illness and anything rare

Is something we fight straight from our chairs

Every day praying someone will understand

We’ll keep our hope until they raise their hands.

Written by,Terry Shepherd09/30/2021

It’s All in the Day

Tomorrow, I go to my Neurologist for my check-up. I do this every six months. I will be discussing with him; my new shoes made for my feet and my Ataxia and Dystonia.

a·tax·i·a

/əˈtaksēə,āˈtaksēə/

noun

MEDICINE

1. the loss of full control of bodily movements.

 

dys·to·ni·a

/dəˈstōnēə/

noun

MEDICINE

1. 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.

 

I am also going to talk about the idea of me having a special type of Ataxia, which is; Sensory Ataxia.

Sensory ataxia

This is ataxia due to loss of proprioception. Proprioception is the sense of the relative position of neighboring parts of the body. It is a sense that indicates whether the body is moving with the required effort and gives feedback on the position of body parts relative to each other.

A patient with sensory ataxia typically has an unsteady stomping gait, with the heel striking hard as it touches the ground with each step. Postural instability becomes worse in poorly lit environments. If a doctor asks the patient to stand with eyes closed and feet together, their instability will worsen. This is because loss of proprioception makes the patient much more reliant on visual data.

The patient may find it hard to perform smoothly coordinated voluntary movements with the limbs, trunk, pharynx, larynx, and eyes.

The reason being is; I see advancement on when I close my eyes. I just can’t do it anymore without falling. I can’t look up nor can I look down; I fall within seconds. I know there isn’t anything anyone can do but I want to see if he thinks this may be happening to me.

My new shoes were taken back and the insert the company had provided for me to have better balance was replaced with a thinner insert. I don’t have the better balance; but the shoes fit better now.

Sometimes I ask myself why do I continue to make appointments with my Neurologist. I already know they can’t help me in so many ways but I keep them for records. I am on someone’s file for what is happening to me and it also helps me keep tabs on my advancement of this thing.

The Dystonia is what also affects my walking. The new shoes don’t seem to help that part. This is where my toes curl under anytime they feel like it.

I’m dealing with all this along with my Parkinsonism.

Parkinsonism is a clinical syndrome characterized by tremor, bradykinesia, rigidity, and postural instability. It is found in Parkinson’s disease (PD)—after which it is named—dementia with Lewy bodies (DLB), and Parkinson’s disease dementia (PDD), and many other conditions.

I’m dealing with it all because I know I could be so much worse off. Taking care of so many patients in my life time; things could be a whole different story for me.

And how is your week going?

Our Chat

I sat under a tree
Shade protected me
Eyes shielded with hand
As I looked over God’s land.

I asked God to sit
In the place that was lit
I asked him; why me
What did I do to thee?

He sat there so still
It almost caused me to chill
He looked deep in my eyes
He asked, why do you cry?

With a calm in his voice
He said there’s no choice
You are going to sit at my feet
You’re family, you’ll meet.

This is the path you must take
The long, winding lake
Rough rocks you will see
But you’ll have strength from within me.

When you come to the end
A star and you will both blend
It will lift and carry you to me
I’ll bring you forever more peace.

Written by,
Terry Shepherd

 

Neurological Diseases

If only we had a brain! Remember that from the Wizard of Oz? Well, who knew the brain could be such a problem. It certainly is when you are faced with Neurological Diseases. Doctors can’t fix what they can’t investigate.

 

You need to have expired here on earth in order to study the brain. This was the case for my brother and so many others dealing with this issue. I went to be fitted today at an Orthopedic specialist for my new shoe and brace. The hope was, that the curling of my toes may stop curling any further.

 

After so many tries of various gadgets the sad news came that my brother used to hear. We just can’t help you. Perhaps a neurological therapist.

 

I have not heard of this but I am willing to look one up and try if it is not too far a way. The doctor said today that there is a possibility of my toes curling so far under that I would walk on the underneath of my toes. Ouch! Just thinking and visualizing this made me cringe.

 

The good news is I am no worse off for the moment and yet no better. The hope that those with this illness carry for a cure or some gadget to make life a little easier to manage is our dream.

 

I am not crushed. I pushed and studied and joined groups to learn about Multiple System Atrophy and I will fight just as hard for myself as I did for him and for others.

 

My son is going to come over tomorrow and try to tighten up the scooter I have. It is wobbly in the steering and the seat seems loose. Of course it isn’t new. It is the one I bought my brother. If it doesn’t help, I may have to see if I can get a more sturdy one.

 

This doesn’t mean I will give up walking, oh no way! I do have bad days when standing is very difficult, and on those days, I would ride the scooter. I wonder if there are any programs that help to purchase or donate one? I don’t know. I know Medicare helps but there is a 20 percent part I would have to pay and I remember from my brother, that is pretty expensive just on that part.

 

Guess it is time to start praying for some more help. Things will work out. I know they will. I know my condition won’t get better and I accept this. God won’t give me anything I can’t handle and he will give me the strength to get through what he gives me.

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

 

 

It Could be Worse

On a Fall evening, the air was humid and thick. Breathing was difficult, fog was setting in early. I sat on the wooden bench outside my home.

No one else seemed brave enough to come out so I sat alone. It seemed strangely quiet with no one to chat with, so I let my mind wander and visited with my own thoughts.

Out of the corner of my eye, I could vision leaves being shaken. A black squirrel was racing across the branches, working on gathering nuts for the cold season nearing. I watched a possum swiftly cross the street as it made its way to the back of our building, hoping to find a snack or two.

My thoughts went back to when I didn’t used to live here. I revisited the different homes I had resided in and graded each one on the pros and cons. I narrowed it down to two. The home I grew up in and the home I lived in a a nearby, little town.

Our home overlooked a small channel. I remember lots of swimming, and fishing, my kids laughing. I remembered my son making cookies with no recipe. My daughter growing up and liking boys. My other son who had this one friend, and the two seemed inseparable.

I was happy, or so I thought. I also remember disaster happening. A divorce was nearing. My life tumbled and has seemed to tumble ever since.

I have never had that same type of peace enter my life since. Although there are good things too. My kids and I seem stronger in our relationship than ever before. They may not like some of my decisions; but they still love me and emotionally support me.

I have beautiful grandchildren who love me. I am alone now in my life, yet surrounded by wonderful friends. One of my friends here has to have a by pass this month. It makes me stop and ponder on myself.

My age has always been a fear factor. Although I am pretty sure I am going to heaven, I fear the dying process. I think about how I am only two years younger than my friend who is going into surgery, and I thank God, for my falls, and lack of not being able to stand well or walk long.

It could be worse. I could be facing open heart surgery, or not walk at all. I could be living in the streets. I could have children that turned their backs on me. I could be hungry or many other things.

Yes, I have this illness, but we all have something going on in our lives, right? We have our doctors, and family and friends who support us emotionally. We are never truly alone, as our angels and God surround us at every minute.

My mind came back to the present. Still no one had came out to sit. The squirrel had become quiet, the possum had disappeared. I stood up and grabbed hold of my walker. I smiled, thanking God for gifting me with all I had; including the bad stuff.

Written by,
Terry Shepherd

 

Laugh or Cry Over It

Yesterday, I had an assessment with Real Services for help with a couple of things that have to do with my falls. I was turned down flat. Two reasons, I am not 65 and the other reason was I am not nursing home ready yet.

Really, are you kidding me? Do you realize how crappy most nursing homes are? We, the people stand together and agree that not one of us would enjoy giving up our own homes, apartments, living quarters and trading it all in on a cold, dingy room, perhaps filled with a grumpy roommate and eating foods we don’t recognize.

I will add here, that not all nursing homes are bad; there are some quality ones, but I still don’t want to go to one. I explained how I am trying to use preventive care for my health so I don’t end up in one of those places. No deal; she said. Wow, what good is Real Services, if we can’t get help until we are ancient in age.

This morning I went for my Wellness check. They are pretty detailed, going over all you have and have not done throughout the year. I go to the doctor on a regular basis, but when your insurance offers restaurant gift cards for going; I say ME!

It went well until it came to the exercise section. No, I don’t do jumping jacks, I don’t race down the street. I don’t do hurdles. I do however, hang onto my kitchen counters and exercise my legs by standing on my tippie- toes and then count; up, down, up, down. I do pull in my stomach muscles on a thought of basis; which is quite often throughout the day. I am trying to keep my before child stomach. LOL.

I am considering talking to a clinic here for Yoga classes. Maybe it would help my core balance, but then again, that takes gas and getting out in the winter driving and cold and ice. Perhaps they have a seasonal pass for nice weather? LOL

She asked if I could dress myself. I said yes, as long as I don’t do buttons or have to squeeze my fat into a pair of size 2 pants. She smiled at me. She asked if I showered by myself. I stated of course, I don’t have a boyfriend or husband, but I do grab the multiple grab bars in my shower and hang on tight.

I told her I do make my own bed which consist of stretching my body. I do fix my own meals; but if they are over ten minutes, I do require the assistance of sitting on my seated walker.

I explained that I do attempt walking around our building or down to the local grocery store, but when I come back, I have to nap because my body is drained and tremoring.

After it was all done and signed, she looks at me and said, “Well now, you are in pretty good shape, aren’t you?” I looked at her and said, “Of course, I am doing great for a 63 year old, who tremors, shakes and falls down. Case dismissed.

Written by my feelings and personal experience,
Terry Shepherd

#Distonia#Parkinson‘s #Ataxia

 

 

You ask about the symbol below? I was nominated for an award for being an advocate for Multiple System Atrophy. I feel quite honored.

 

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

 

 

 

 

 

 

When Does Life Become Important

A stubborn man I always called him; that is until the day arrived when life turned on him. When Brad was growing up, he wanted everything he saw. If mom and dad said no, he found other ways to raise the money to buy what it was he wanted. I always said he was a spoiled brat, but maybe I was wrong.

One day came and people noticed how tired he looked. He walked tired, ate tired, and worked tired. I had made a comment that perhaps it was time to get that annual check-up that he had put off for years. I think he agreed, because before long Brad was calling me and telling me the date of his doctor appointment.

A few days after the appointment, the doctor called and said they wanted to talk to  him immediately. He went and I rode along for moral support. His sugar count was over 1000. He was told he needed to be immediately placed in the hospital to lower those sugars. This is when Diabetes was placed on his title.

In the hospital he was taught all about how diabetes works and how to keep his numbers down. He followed instructions, but soon after discharge, he realized he missed the bad foods he had consumed, and before long, he mentally ignored the doctor’s instructions and was soon taking insulin.

About five years he lived like the person he was before being diagnosed. He included all bad foods, bad eating habits, smoking, swearing, living in his own moments, and ignoring God.

Slowly I watched this body become beaten down. I heard complaints of being sore, tired, always in pain. It didn’t matter what I said, he ignored me. He turned from a smiling face to a grumpy old man in a young man’s body.

I continued to try to reach out to him to change his ways. I wanted him to find  his life valuable enough to make the changes. I wanted him to turn his life over to God and let the almighty help put him together again and let him see what life actually had in store for him.

Today, I see the strong-willed spirit still flying high, but in all the wrong places. It bothers me that he has the tools before  him to fight an early death. There are thousands of patients in the world that lean on God heavily, including myself, for cures and comfort.

My heart breaks as I hear of new patients being diagnosed with Multiple System Atrophy. It bothers me that now that I know the facts of what the doctor was really saying with my diagnosis; I also have Parkinson’s and Multiple System Atrophy symptoms.(Dystonia/Parkinsonism/Ataxia) We can do nothing but pray, keep our hope high, eat right and take our medicines.

I don’t understand people, but I know there are those who don’t give a damn about themselves, whether they live or die, but I do care and I know others who care very much about their lives and families and friends.

My mother used to say people can’t begin to understand what others feel unless they have lived in their shoes. This is true, but what about the yearning to be the best you can be? Maybe that’s not what it is all about.

I just know for me, I could definitely improve eating habits along with exercise and many other things. I want to live. I don’t want to leave this earth earlier than I should. I want to keep watching God’s beauty. I want to continue to write my short stories and poetry. I want to see a cure for many diseases. I want to help others. I want to see my family happy and fulfilled. So much to live for, is my thoughts.

What are your thoughts? What would you change about your past or do in your future? Are you content with where you are in life? Are there still things to do on your bucket list? If you feel comfortable enough, talk to me about it. If not, then think about it.

FOR OUR LIVES ARE BORROWED TIME ON THIS EARTH. WE HAVE BEEN PLACED HERE TO DO SOMETHING SPECIAL FOR GOD. LET US MAKE THE BEST OF WHAT WE HAVE AND BE CONTENT WITH WHAT WE OWN.

Humpty Dumpty Can be Healed

She sat alone
Her dog, his bone.
She sat and cried
Asking why.
Feeling sorry for herself
Humpty Dumpty on shelf.
Why me, why me
Can’t you see?
Broken in two
Boo hoo, boo hoo.
A party she had
Pity so sad.
Break your crown
Now get down.
Off that shelf
You’re full of wealth.
Friends and family too
Always saying, I love you.
Just because you can’t stand
Or lend a hand, you’re still so grand.
They’d miss you, you realize
They’d look at the skies.
Tears in their eyes
For saying goodbye.
Now give all you can
We’ll take the love you send.
Your life’s not over
Just lean on our shoulder.

Written by,
Terry Shepherd