All in One Morning


There are so many ways to be brave in this world.

I don’t know what happened. I was thinking maybe my Dystonia was having its way with my foot while I napped.

I had to go to my primary doctor this morning for my three-month lab work. I could barely walk. Yesterday after taking an afternoon nap, I got up and I could not stand on my foot.

Dystonia is a movement disorder in which a person’s muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body.

I forced myself to endure the pain because there was no one around to help me and I was determined to go to the local church with my friends for a home-cooked dinner. I limped and was unsteady on my feet; but I did make it.

Today was about the same. I couldn’t wear my shoes and although it was chilly outside; I wore my flip-flops. It was difficult to drive and walk or even move.

I decided to treat myself to a breakfast made by someone other than myself, so I went to our local pharmacy which has a cafe within. I used to take my brother there a lot because they have a large Coca-Cola collection and if you have followed my blog for years, you know he was obsessed with this product.

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Map of HomeTown Pharmacy & Luncheonette - Zale Drugs

See outsideHomeTown Pharmacy & Luncheonette – Zale DrugsWebsiteDirectionsSave4.966 Google reviewsPharmacy in Warsaw, IndianaAddress: 1775 E Center St, Warsaw, IN 46580HoursOpen ⋅ Closes 7PM

Phone(574) 267-7356

My brother and I had been a part of this business since our parents started taking us when we were five and six years old.

My daughter worked there and I worked there. As I watched the waitress making my breakfast of eggs and bacon, I could almost hear my brother chatting away about all the Coca-Cola items.

My brother who has since passed away from Multiple System Atrophy.


As I watched her, I thought back to how many years ago it had been since I worked there and I could remember me racing up and down the path, filling orders. I thought I could really move quick.

Now, I couldn’t do that, no matter how bad I wished for it. Not only do the years fly by so quick as we age, any health issues can really slow us down. Still, I enjoyed my memories. I felt the ping of teary eyes thinking about how much I miss my brother and I reflected on my past months and can see my own progression in my health decline.

It really makes you stop and realize just how precious today actually is. It helps me keep working on being brave and dealing with medical issues. It helps me realize how much worse I could be. It helps me fight to walk today. Ignore the pain and smile because this is my life and today I have a chance to live it.

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#Dystonia

What About Today?


When you can’t find sunshine; be the sunshine

Today was cloudy and chilly when I got up. Part of me wanted to crawl back under the covers and go back to sleep but I knew I needed to get up.

I needed to thank God for giving me today. I needed to ask him to guide me through this day and help me to be a light to one other person.

I needed to exercise my one hand. I have Arthritis on my knuckle and two fingers. It helps them although it hurts so much at first. I needed to work my muscles in my legs so they don’t get weak. I needed to use my feet although they are in daily pain.

I have to try. When I help myself; God will help me.

It is now in the afternoon and I am glad I forced myself to do what needed to be done. Tomorrow, I will allow myself to sleep in a little, just like the old days when we were teens. How late do you sleep in? How late did you sleep in on the weekends when you were teens?

I hope your weekend will be nice. 55 degrees is predicted for Saturday and chillier on Sunday and Monday. Tomorrow evening is our Saturday night supper here where I live. A night I don’t have to eat alone!

Ataxia


It has been over two weeks since I finished my medication for my bronchitis. I still have that nagging cough remaining but can tell it is getting better. I went to the hospital and had my MRI. It was a real experience.

The machine took up the entire room. It reminded me of a big flying saucer and all white. There was a large table with lights and there were lots of magnets. It took some time for the tech to position me exactly how  he wanted me.

Wedges placed between my legs to lift them, between my arms so nothing touched anything and under my neck. My head was wrapped inside a plastic thing that looked like an over-sized football helmet and a cloth was placed over my eyes. All I saw was darkness.

After I was rolled under the lights, I heard rumbles or vibrations. These were making the neurons in my brain bounce in all directions. The rumbles went at different speeds and tones and was measured. Each set lasted three minutes and the entire process took a little over half an hour.

The conclusion came back clear. It doesn’t really mean anything to come back clear. Many neurological testings show nothing but yet we can all see there is definitely something going on.

I have my choice to go next to Cleveland Clinic for more testing. I can’t make up my mind but I’m leaning on the not going. I already know I have Ataxia. I have every symptom, so why waste more money on finding nothing.

Many MSA patients like my brother never found anything positive. The symptoms are what really told the diagnosis. I fit into this category also.

I have an appointment with my Science of Neurology doctor May 3rd. I will tell him about my MRI and my new symptoms.

I am progressing in my weakness and unsteadiness. My newest symptom is a little hard to explain. I walk a straight line but while walking my body drifts off to the right. Sort of weird but I have had it going on now a little over a week. I guess I will make my decision based on what this neurologist says.

Neurology is so mysterious. Everything happens within the brain. Nothing definite is usually found until after death testing. I just make up my mind to go for today. Hope for the best and do the best I can.

Oh the Valleys we Travel Through on our way to Heaven


It seems so right that I changed the name of my blog page to Who Am I, months ago. Why? Because anymore, I don’t really know who I am.

I know I am a child of God, but here on earth, I just don’t know. I know I am a mom to three and a grandma to several, but some days, I don’t feel like a good mom. I have one child who pretty much has disowned me, it seems. I have begged, pleaded, called and text but no answers are provided for me on what I may have done.

This has turned my health upside down. My blood pressure is now messed up going higher than lower. I am stressed with sadness that keeps my veil of happiness covered by blackness.

I have apologized, sat for hours wondering what I may have said or done without realizing it may hurt others. I am getting sick and I find myself wishing I was at the end of my journey here on earth.

I snap out of that thought though because I am not really ready to die yet. I even called my primary and neurologist and have spoken to both about this up and down blood pressure problem I am having.

I know that my diagnosis has been changed from Parkinson’s to probable MSA. This sickens me. Not so much because it will shorten my life; but because I won’t be as lucky as my brother was in having a sister to take care of him. I will go through this alone with God beside me; which means I am truly not alone.

Life has not been a bowl of cherries as of the past few weeks and I am grateful that Spring as officially arrived and I can get lost in my camera once again outdoors.

Oh the valleys we travel through on our way to heaven.

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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

 

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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?

In the Field of Flowers


I sat on a broken tree stump
Gazing out over the field of flowers
I tried counting each one but I failed
I saw your name printed on a stem
When I looked at the buds
I swear they were eyes
And you were reading my heart
I raised my hand out as if I
Thought you would bend your petals towards me
The wind blew gently, causing you to bow my way.
Your petals bent and I could see the form you displayed
A smile on your face, seeds spilling as tears
You miss me too. The wind shifted the other way
You stood tall and very still. I took a picture of you
That I will keep in my heart forever.
We communicated; you and I
I feel an inner peace knowing that
We miss each other the same and
I will remain as strong as you are standing
In the field of flowers.

Written by,
Terry Shepherd

 

 

17154-Flowers-Blowing-In-The-Wind

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.

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I Had to Smile


I wrote yesterday about my chaotic week. Full of hurt and loss from loved ones. After repeating to myself over and over, See through your eyes Lord, Hear through your ears, Love through your heart; I am more calm this morning.

I can not control how I am feeling in my heart from people’s actions but I can control how I let it affect me. There is nothing worse than being un-friended by a loved one or knowing there is an issue but the other person won’t allow you to know what it is.

What can I do about it? Pray, give it to God, let him deal with it. He knows how to fix things. The other thing I do when I get to bombarded by the “stuff” in this world is look for something that makes just me  happy, and this is what I did.

I went to my favorite second-hand store. I looked at everything, knowing I had a budget I had to stick to. I saw this piece that I had been wanting for about a month. Every time I went inside this store, there it sat.

Yesterday, I decided; this would make me smile. This would make me feel good every time I went into my bathroom, which is where I placed my new piece. Here is a photo of it and yes, I am still smiling over it.

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It is about four foot tall. It is slender which fits my bathroom perfect. I filled it with toilet paper and soaps. I love it. Of course I love old things. What do you think? Do you like it? Do you ever buy yourself treats when life gets you down? Does it help when you do?