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

Memories for all time

I made your photo my cover
There really could be no other

It never fails to amaze me
That your photo drives me crazy.

It’s been five years this March
When you went to the golden arch.

I know you are a happy guy
I don’t even question why.

For God so loved you so
He saw your pain that glowed.

He raised you and stood you up
You drank from his healing cup.

I hope you understand
That I’m still living on this land.

My heart still aches for you so much
I wish I could reach your hand and touch.

You’d say nothing to me I remember
You started this one September.

Multiple System Atrophy
Brought nothing buy agony.

You suffered more than any I know
You deserved your time to go.

I’ll always love you my brother dear
In my heart I keep you very near.

Til the time comes and it’s my turn
Your memories in my heart will burn.

I miss you dear brother Al.
You will be gone five years, March 24th, 2019.
Love you so much,
Your sister, Terry Shepherd

 

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?

The Small, Dark Room

Last week I went to a local pharmacy who specializes in making shoes for feet that aren’t quite normal. I have Parkinsonism/ Ataxia/ Dystonia and am a Diabetic. The dystonia and my diabetes affect my feet.

Have you ever read the story about how Japan wouldn’t let females have too big of feet? Well, that is my feet. My feet curl under. This can hurt and definitely affect me buying shoes from any regular store.

The sales lady ordered a pair of shoes that she thought would help me. They came in and I was instructed to wear them two hours each day for one week and then I could wear them all the time.

After a few days, I discovered bruises on the top of my toes and upper part of foot. I called the pharmacy and they had me scheduled to return today.

They were going to fit me to some type of deep shoe. I was taken into a small, dark room unlike the room I was instructed to go to in the beginning. That room was full of pretty colored shoes and popular looking shoes.

I freaked out, don’t ask me why. I didn’t want to look different? Probably. We ended up taking the insert out that was provided to help my Ataxia part, the balance of my body, and inserting a thinner insert. I am now home and am to try wearing these.

Hopefully my bruises will be gone and these work, other wise, back to the small room.

 

These are my shoes.

Ataxia and Me

Today, I received a gift in the mail from a friend here on Facebook. It is a bracelet. An Ataxia bracelet.

It’s hard to explain my feelings. I chat with those here at Facebook who have Ataxia. This is where I get my support from the most because they understand what I go through.

I would say it defines me. When people ask if I am drunk; I can show them my bracelet. When people ask me what’s wrong with me; I can show them my bracelet.

I thank-you, Kym Thompson for this beautiful bracelet. I will wear it daily.

You ask what Ataxia is?

What is Ataxia
Ataxia is a degenerative disease of the nervous system. Many symptoms of Ataxia can mimic those of being drunk – slurred speech, stumbling, falling, and incoordination. All are related to degeneration of the part of the brain, called the cerebellum, that is responsible for coordinating movement. Ataxia is a disease that affects people of all ages. Age of symptom-onset can vary widely, from childhood to late-adulthood. Complications from the disease are serious, oftentimes debilitating, and can be life-shortening. Ataxia is an umbrella term used to classify a group of diseases that include:

Ataxia Telangiectasia
Episodic Ataxia
Friedreich’s Ataxia
Multiple System Atrophy
Spinocerebellar Ataxia
Sporadic Amigoscon Ataxia

Symptoms
Symptoms vary by person and type of Ataxia. Symptom onset and progression vary as well. Symptoms may worsen slowly, over decades – or quickly, over mere months. Common symptoms of Ataxia are lack of coordination, slurred speech, trouble eating and swallowing, eye movement abnormalities, deterioration of fine motor skills, difficulty walking, gait abnormalities, tremors, and heart problems. Individuals with Ataxia often require the use of wheelchairs, walkers, and/or scooters to aid in their mobility.

 

God’s Got This

It’s been a rough couple of weeks for me. Many doctor appointments. Doctors of specialty trying to fix my unsteady gait problem. No one has been able to help; though I do appreciate the efforts.

 

Many times Neurological problems can not be helped. Doctors can not fix the brain while we are still living in most cases. I have had my eyes and prescription changed and I got new glasses and frames too.

 

Next week I go to my Primary care doctor for lab work to see how my sugar levels have been and how I am doing on my insulin. I am still struggling to keep my sugars down so I have to wonder what will happen next. I, myself, believe with the fight I have to keep steady sugars, that perhaps after thirty-eight years of being a Diabetic; my pancreas is failing. Time will tell if my thoughts are on the right path or not. In November; I go back to my second Neurologist for a re-evaluation.

 

I have had personal issues along with doctor visits. I have been so sad that I can’t make everything in my life correct. I was having a wonderful luncheon with a good friend of mine Wednesday.

 

I just love spending time with this gal. She is relaxed, a good Christian, and we can talk about anything. I had been telling her about what has been happening in my life lately and she said something that turned my thinking a 360.

 

She said, “Maybe you are being tested by God to see if your faith will hold strong during these times of struggles.”

 

Bingo! I knew as soon as she said it; that she was right. I suddenly relaxed and I thanked God for allowing this friend in my life that day. I am still having my issues; but I have a whole new outlook. I am giving my problems to God and letting him deal with it.

 

Back to my living. I am living with a smile and hope , knowing God’s got this!

Just a thought

Not going to lie

Been a bad day

Shed a few tears

Friends have prayed.

 

Frustrating as hell

When the doctor says no

But I can’t give up

I will continue to go.

 

Just throw me a hug

When I’m feeling down

I’ll do the same thing for you

I’m not clowning around.

 

We need each other

When others don’t understand

We’ll fight our unique battles

Until God takes our hand.

 

Written by my feelings,

Terry Shepherd

08/01/2018

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.