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.

cropped-terry

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.

A7200W-Qrt-Profile-Web__42952.1531255584

Are You Ready Too?


It’s been a moving forward but slow last week. I pulled a muscle in my lower back. I don’t even know when I did it. Years ago when my daughter was born, which was in Germany, the doctors used the Spinal block for their drug of choice to deliver a baby.

Today, forty some years later, I can’t stand to have that spot touched. I’m sure Mr. Arthur has been settling in for a long-term relationship with me. I babied my back. I used OTC medications and my rice bag. I laid in bed quite a bit.

Yesterday, was the first day I could actually go through my day with only ten percent pain. It feels good to be back to my usual self. I am hoping that this week I will also receive a phone call stating my shoes will be ready to pick up.

With my Ataxia, it is  hard to stand steady and I will try anything that may help my feet. I hate that feeling that I am going to fall or the weeble wobble that my body does.

This week I will return to my volunteer job and there are doctor appointments and government meetings. I pray all will result in positive news.

The skies are something I wish I could change. The gray and brown colors are mainly what I see daily. Spring is coming though for us here in Indiana. Robins and Geese have been seen and these are good signs. Did  you know that Robins will not arrive back here in the mid west unless they are sure they won’t have to go a day without food? They are very smart birds.

I am so looking forward to greener grass, the smell of fresh air, the birds singing and watching the first flowers pop-up above grass levels. What about you? Are you ready for Spring?spring-season

It Has Come the Time to Get Going


Wow, did we here in Indiana have some crappy weather this past week. We made new records for cold. Today, finally, the temps are above zero. I went out and cleared the knee-high snow from my car and started it. It felt almost like Spring.

 

Life has thrown me some curve-balls of news in the month of January. I, for one, am so thankful January is over. February will be better, even the groundhog did not see his shadow. Monday we are to be almost fifty.

 

I have been thinking about this winter and how it is time to do something. I have lived in my little part of the world two years. I want to go somewhere for a couple of days. I can’t afford too many people because of running into me and knocking me down. Hey, I can’t help it. I fall easily. I also don’t want lots of noise on top of noise. I want relax.

 

I love that word. Relax goes with calm, smile, breathing slow and easy, little stress. Isn’t it a lovely word? Without much money, what can a gal do with my thoughts? Any suggestions? Oh, by the way, in case you wonder, I live in Indiana.

 

winter2

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?

 

curl

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?

Ataxia

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.

 

wreath


Hello my friends. It has been a while since I have written to you and for this; I apologize. I started a volunteer job. I work two to three days per week and I feel really good about it. I am doing something to help someone else. The issue comes after I work. I’m exhausted. It isn’t that I work to hard, it is that my Ataxia can’t take it so I sleep a lot of the next day.

I have been making wreaths for Christmas. I donated one to the place where I work. I have sold some and others I have hanging in my home. The wreath below is the one I finished this evening.

 

wreath

I have been more into Christmas this year. I have put a tree up for the first time in five years. My brother will have been gone in March; five years. I feel like I can really enjoy the lights. I have a white tree with blue lights. It brings a peace within me.

I am working on getting simple yet good recipes around for Christmas baking. I don’t  have freezer space and will have to make so much of this the week of Christmas. I have to have it simple because Ataxia wears me out so quick.

I hope you all enjoyed your Thanksgiving. I did. I spent it with one of my sons and his family and my nephew and his family were there also. We enjoyed the day and I was very thankful to have their home to share the day in.

Anything you want to tell me about? Something new to share? I’m listening.

 

 

My Christmas Tree


THIS CHRISTMAS

This is the first year
After four years
From when my brother passed
That I am feeling up for a Christmas blast.

I wondered if the feelings would ever return
Or were they permanently burned
But I feel joy bursting from my heart
i feel like I can really start being a part.

The tree is up, the lights are lit
I think of my brother and a tear did drip
I told him hello and how I miss him so much
I asked him what he thought of my Christmas touch.

I felt a peace fall over me
As I looked at my Christmas tree
I knew he was smiling from up above
I really could feel his Christmas love.

I know it’s early to put my tree up
Cuz there are those who say, hey what’s up!
But Ataxia can rule my day, really get in my way
And today I was good so I did what I should.

I decorated my tree, I thought of mom, dad and me
I remembered Christmases past and what this year could be
I told myself I’ve got a great family
And we will share among this year’s Christmas tree.

Written by,
Terry Shepherd
Nov 11/18

 

christmas tree