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

Indiana is in our Winter Mode

We are going through a real cold snap. It started two days ago and is to get worse each day at least Valentine’s day. There will be days this coming week where the high will be zero. I hate winter since it affects my ability to walk. I need my walker at the least and it doesn’t work well on snow or ice.

I hate cold even more. My feet always are cold in the winter, partly due to the weather and partly due to my Diabetes and age. I can’t wait until this month is over. I always look forward to February because it is short in days and longer in daylight.

The Covid is still here so we are still under some restrictions. Businesses are hurting but I think school kids are hurting worse. E-learning as we call it is done from home. The parents have to be quite disciplined to be able to help their children with online learning and if they or someone that is caring for them isn’t, I would think the child could slip between the cracks real quick. It is always easier to learn when it is learning in person in a class.

I hope and pray Covid leaves us soon, and leaves our countries but new strains are already showing up here in the United States from South Africa. Will it ever end? God has a plan and I believe he knows what is going to happen and why.

Do you live in an area where winter is going on right now? I saw Ute is observing Spring already and I wish for that. We do have Robins returning and this is a good sign, because they won’t return if the chance of food could not be found.

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.

And How is Your Wednesday?

Hello my friends. Wow, you should have seen me this morning. I drove with both hands on the proper position of the steering wheel. I probably drove right at the correct speed limit. Why did I do this? It was the first, actual day of winter weather I drove in for 2019.

 

I have a much smaller car and my fear has grown each year of driving in the snow. I am sure I could have made a great poster child for driving “Winter 2019.” Not only was it causing me to be more cautious, I was forced to turn around at a certain area because of road repair. I had to go all the way around to get to my destination and I also got stuck by a train going through. Thank goodness my patient was graded an A+ today.

 

It is cold out too. Lately we have seen more Fall like temperatures but today the high is supposed to be 25 degrees here in Northern Indiana. We really don’t have much snow to talk about. I can see the grass peeking through the snow. Many have been upset by the lack of snow.

 

I live in an area where there are many lakes. Winter activities have been placed on hold while waiting for the white stuff to fall. I haven’t minded at all. I don’t like cold and I don’t like driving in snow either. I have to admit though, while sitting at my living room window and watching it snow; it was pretty.

 

I don’t have a lot on my plate for today. I have some meat cooking in my crock pot for supper. I cleaned yesterday and have no great energy for cleaning today. I am just enjoying my afternoon now and ready for what the evening brings.

 

I’m going to go to another subject now. Sweating, I know, it sounds gross doesn’t it. I remember back when my brother was still here with me. He had MSA and it caused him heavy, no not heavy, I would say profuse sweating. For about three months now; I am so over-heated almost daily.

 

I think I even mentioned last week that I still have my air-conditioner on. Last night was the worst night yet. I woke-up at 1 a.m. I was sweating so bad, I was soaked all over. I jumped up out of bed and thought to myself; this must be my sugars. My numbers must be low. I checked it and it was fine. I can’t help but wonder if I am going to have some of my brother’s sweating issues. I go to the primary doctor next week and I will bring it up.

 

My brother had a neurological disease and I have one similar to it; so I can’t help but wonder what is going on. I’m also going to see if Medicare will pay for me some diabetic shoes. Last year they would not after having covered them for years. I was told that because of cut backs, my feet had to be deformed. I am really struggling this year with my feet. I don’t have the pads on the bottom of my feet due to Diabetic Neuropathy. My feet feel like they are walking on cement floors. They hurt, so I’m going to ask again. I hope they can help this year.

 

How is your day going my friend?

 

A Bitchy Day, Darn it!

I hurt my back Sunday evening. I have babied it and taken Ibuprofin for a few days. I went back to my volunteer job today after missing Monday and was there about an hour when the pain reared its head.

I had some Ibuprofin with me so took two and went about my shift. Now, I am a bitchy, short-fused, in pain, woman. I don’t want to talk to anyone, see anyone. I just want to be mad.

I look around at my living room and it is filled with boxes, Christmas wrapping paper, tape, scissors, unwrapped gifts and plain old mess. I hate mess. I am a neat freak person. For this reason, I will be glad when Christmas is over? No, maybe just glad when these gifts are wrapped and delivered.

How did one little back swelling set me off for the rest of my day? I don’t know. A couple of years ago I leaned back on some pillows to watch TV. When I lifted my body back into a sitting up position, something pinged and my mouth opened wide in pain. I babied it for about a week and it finally got healed, but if I do something to use my back in that area, boom, it is back, the pain I mean.

I look at my kitchen and I see the papers there with the recipes I want to make for the holiday baking, but I don’t go do it. I just don’t know what is wrong with me these days. I am tired. I mean I am tired beginning a few hours after I wake. I don’t know if it is my illness, my age, or what, but I get sick of being tired. I could take three naps a day, every day if I could.

Well, I surely hope your Wednesday is smoother than mine. I am ready to get my P.J.’s on but it isn’t bedtime, besides, I am doing laundry. So, how is your day going?

WHO AM I

Who Am I is the name of my blog here at WordPress. I used to always think I knew who I was but beginning in July, 2017, life started to change and I got caught up in a whirl wind of emotions.

It began with my father having two cancers at once. Leukemia and Multiply Myeloma.

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

 

I took care of him for the  year that he went through this before it took his life. I learned not to be embarrassed by bathing him and taking over his daily chores. I was his daughter and thought I could never look at my dad in anything other than being fully dressed but the nursing person in me took over and I did it.

 

Next, I got a divorce. I had always been married since the winter following graduation. Suddenly I was alone and wondered if I would make it. Then came my brother’s heart attack and his ugly disease, Multiple System Atrophy.

A. 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.

 

Today, I have some of my father and brother’s illness. I have the Parkinson’s and Ataxia. I wondered daily not knowing where I was going and who I really was. It is just recently that I seem to be settling down inside.

 

I pray a lot. I go to church more often and I believe God is showing me things I never actually realized about myself.

 

I have stepped out and tried painting. I made Christmas wreaths this year. I have been asked to provide our Saturday night supper this coming Saturday with selections of Christmas music by playing the piano. Before I had the time to think before answering; I answered yes, I will. God must have had a hand in that answer and I will lean on him that I can pull this off.

 

I volunteer now at a local agency. I help many people and this is good for me since I tend to have my own little pity  parties on why I can’t stand well and do the things I used to do. There are millions of people worse off than me, and my job shows me this each day I work.

 

I don’t know who I am but I do know God still has work for me to do and I have a purpose here on earth. I look forward to each day, asking him to help me shine to others, to help those in need, and to thank God for all I can still do.

Merry Christmas my friends.

 

The Thinking of an Ataxian Gal

Getting that time of year
When multi-tasking is in gear
But I’m getting past that stage
When my brain doesn’t want to engage.

Seems so overwhelming to me this time
Dancing thoughts are all in my mind
Writing mental lists for me to do
Isn’t working like it’s supposed to.

Thinking Thanksgiving recipes
Thoughts of beautiful Christmas trees
Making messes in my little home
Listening to Christmas on my phone.

I hate thinking it so early this year
Put the holidays on rest for another year
Let’s just sit and drink coffee and watch it snow
Let the holidays come and watch them go.

Written by,
Terry Shepherd
11/10/2018

 

I Guess I’m Worth It

Although I am tired and ready for a nap; I had to write a little. It’s an unwinding experience for me and also; did anyone ever tell you I’m a chatterbox? No? My mother and grandmother said I was always a chatterbox when I was little. They said I was dutch too. I guess I didn’t talk too clear.

 

Anyways, today was a trip to the same doctor twice. I went this morning to have blood drawn. I just got back home from my second appointment where we discussed the results of the lab work.

 

I was shocked when my sugars had come down actually a whole number. I don’t know how that could have been since I have struggled the last three months to keep the numbers in tow.

 

They rise so  high in the afternoons so the doctor split up my insulin shots to one in the morning and one at bedtime. Same dosage; just split in two different time frames. I ate a lot more ham salad and eggs this past three months and that showed. I guess no more ham salad for a while. My sodium went up a little. This must be from switching from Sea salt back to regular table salt. I will get the Sea salt next time I go to the store. I just hate paying so much more for it over regular table salt; but I guess I’m worth it.

 

My cholesterol was up a tad but I know that was from too much ham salad. Everything should come back down to normal on my next visit. The only things that he couldn’t fix was my burning headaches. He said those are from my Ataxia. The sore varicose veins, which he said are from my legs working so hard at walking and not falling. He said if they get so bad I can’t stand it; compression stockings.

 

Oh, I hope that doesn’t happen. I used to put them on my patients a lot. I would have to sprinkle baby powder on the legs and then roll them up on my hands and then slowly squeeze them on the patient’s legs. Whoa, what a job. I think it would be much harder to have to put them on my own legs. I would bend over and then fall. Thinking positive thoughts that this doesn’t happen for a long time.

 

I always eat breakfast out when I had blood drawn. I am starving by the time I get out of the doctor’s office. I went to my regular place and was shocked at the prices. I can see paying top dollars for a fine meal, but eggs and toast, almost 9.00? Nope, gonna have to find a cheaper place next time.

 

Now I’m tired and I am ready to get out of dress-up clothes into comfy clothes. It is chilly outside, a sunny day but windy. A perfect day to stay in and do nothing in particular. You all have a good Wednesday evening my friends. Talk soon.

 

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.