Glitch


This Parkinson’s Disease can get on my nerves. My left arm and hand seems to have a mind of its own when I am lifting something or trying to use my fingers to eat. I find myself dropping so many things. I think I have a grip on something and yet watch it slide out of my fingers as if they were butter.

I will not complain though. My brother, Al, had Parkinson’s along with his MSA. He suffered zillions of times more than I am, so I just have to figure out how to use my other arm better. Isn’t it a hoot that I am left-handed and this is the arm that is affected first.

Last night as I was fixing my supper I think I dropped silverware at least twice and a pan once. I will be glad to get the last box packed and am settled in my own place with everything put away. I am not sure with this disease if it is more important to keep using the bad arm or to try to adjust to the other. I am sure moving boxes from room to room don’t help.

 

GLITCH

 

When you think you

Know it all

And you got

The game just right

Along will come

A glitch that will

Bring to you a fight

There is no blame to place

No one said that

Life was fair

It just means I

Have to be strong

And keep my

Head held high

For this is nothing

Compared to

Losing my own life.

Written by,

Terry Shepherd

08.06.2014

 

night flower

 

 

Last Evening


fiddler-on-the-roof-800-75 Last evening I was invited to see a new play at the Wagon Wheel Playhouse in my home town. It was called Fiddler on the Roof.

 

This article is about the 1964 musical. For the film, see Fiddler on the Roof (film).
Fiddler on the Roof
Fiddler on the roof poster.jpg

Original Broadway Windowcard evoking the artwork of Marc Chagall, source of the title.
Music Jerry Bock
Lyrics Sheldon Harnick
Book Joseph Stein
Basis Tevye and his Daughters by Sholem Aleichem
Productions 1964 Broadway
1967 West End
1971 film
1976 Broadway revival
1981 Broadway revival
1983 West End revival
1990 Broadway revival
1994 West End revival
2003 UK tour
2004 Broadway revival
2007 West End revival
2008 UK tour
2009 US Tour
Awards Tony Award for Best Musical
Tony Award for Best Score
Tony Award for Best Book

Fiddler on the Roof is a musical with music by Jerry Bock, lyrics by Sheldon Harnick, and book by Joseph Stein, set in the Pale of Imperial Russia in 1905. It is based on Tevye and his Daughters (or Tevye the Dairyman) and other tales by Sholem Aleichem. The story centers on Tevye, the father of five daughters, and his attempts to maintain his family and Jewish religious traditions while outside influences encroach upon their lives. He must cope both with the strong-willed actions of his three older daughters—each one’s choice of husband moves further away from the customs of his faith—and with the edict of the Tsar that evicts the Jews from their village.

The original Broadway production of the show, which opened in 1964, had the first musical theatre run in history to surpass 3,000 performances. Fiddler held the record for the longest-running Broadway musical for almost 10 years until Grease surpassed its run. It remains Broadway’s sixteenth longest-running show in history. The production was extraordinarily profitable and highly acclaimed. It was nominated for ten Tony Awards, winning nine, including Best Musical, score, book, direction and choreography. It spawned four Broadway revivals, a highly successful 1971 film adaptation, and the show has enjoyed enduring international popularity. It is also a very popular choice for school and community productions.[1]

 

I enjoyed it very much. The entire play was a little longer than others. The first break was not until almost 9:30; which most breaks are around 8:30, but it was worth it. I love the voices and the acting.

One of the main stars, which if you look at the above photo, I am talking about the one with the beard. I was fortunate enough to get to meet him after the show. It turns out that he lives less than an hour away. Gee, I wonder if he is married, lol.

Upon leaving I was so humiliated. I seem to have issues when I stand and walk very far. I was leaving my seat and had made it to the front double-wide doors, when suddenly I felt like I was going to fall.

I have had to deal with this more lately. I never fall, but right there in front of hundreds of people I tipped forward, running into this poor older lady’s back. I am sure my face turned beat red. She turned and looked at me and thankfully didn’t cuss me out; but instead smiled. She was probably thinking that woman had too much wine.

Yes, you can purchase wine only during these plays but I am not allowed to drink because of my Diabetes. I didn’t say anything more to her than how sorry I was. I couldn’t explain. I guess I didn’t want her to know that I had medical issues.

I had to have help from my friends to make it down the hill to the car. I tried to erase the embarrassment away by thanking God that my friends were kind and didn’t mind at all walking an old lady down the hill, arm in arm.

Chapter 26


What I didn’t expect to happen when Al moved into the nursing home was guilt. Guilt surrounded me. Everywhere I went, every thought I had; guilt was there eating me alive. I went to see Al almost every day for the six months he was in there.

I ate lunch with him each time. Sometimes I went for supper or breakfast. I had been in the nursing field for over twenty years so I made several non-routine…

View On WordPress

Chapter 26


What I didn’t expect to happen when Al moved into the nursing home was guilt. Guilt surrounded me. Everywhere I went, every thought I had; guilt was there eating me alive. I went to see Al almost every day for the six months he was in there.

I ate lunch with him each time. Sometimes I went for supper or breakfast. I had been in the nursing field for over twenty years so I made several non-routine visits. Everything seemed to go well the first few of weeks.

Lots of attention was showered on Al. Staff coming into his room more than I had had dreamed, but then things calmed down, and then the storms started to brew. When Al went into the nursing home he could still walk with his cane.

Before Al had entered those big, front doors he had already spent three months here at home doing physical therapy with the staff from this nursing home. Al complained a lot from pain but I thought those old words, no pain, no gain.

I requested that he have no more therapy once he entered the nursing home, but somehow my feelings got over looked and therapy became a constant in Al’s life for the next several weeks.

What I didn’t realize, but was beginning to recognize was the more Al did his workouts, the more tired he became. His bounce didn’t come back like it does for the rest of us. With lots of studying and learning I discovered that after a certain point of having MSA, the muscles do not bounce back. They have the reverse effect. They begin to crumble.

Of course, at this point I did not know that Al had MSA, (Multiple System Atrophy). I was under the assumption  he had PD, Parkinson’s Disease. Al began to sleep more but I thought this was due to the illness.

What I learned though was staff quit paying attention to him. They came and helped him for sure, but the extra time was not there anymore. He was becoming bored. With his mentality at age 10, these older folks that reside in nursing homes just plain weren’t keeping Al’s interest.

He did enjoy Bingo. He won treats which he kept stored up in his room. I always told him, ” You are storing these like a squirrel stores nuts for the winter aren’t you?” He would laugh and soon I discovered he was eating them at nights along with  his bedtime treat staff gave him.

Now I always kept Al’s dresser full of treats. Anything from Reese’s cups, Twinkies, Granola bars, about anything he requested, and of course pop. It didn’t take long to figure out what was going on when the staff began to let me know of Al’s weight gains.

I had seen too many deaths in my career and always believed that if I was going to get a terminal illness, it was better to be on the heavier side. I know, this sounds crazy. We are supposed to eat lean and stay fit.

But I saw things in a different light. Knowing Al had PD, I wanted him to be as happy and content as he possibly could. I should just come right out and say it, I spoiled him rotten.

I knew what PD could do to his life and so I was determined to make the rest of his days full of smiles. In the end, I was very thankful that Al had gained weight. It saved his life for a little extra time.

So, back to what I was talking about. When I noticed Al was getting weaker and learned the information I did, I demanded therapy quit working him so hard. They did listen to me and turned to an  infrared machine that they would place on Al’s sore muscles and help them to feel better.

They spent more time with him working his fingers to help them relax and stay flexible because of the nasty tremors. Al seemed to draw into himself a little more each day. I began to carry more guilt at how I was to blame for him being there, even if he did want to go.

I was about to go to the head of the company and make a request that I wanted to take him  home for good. Before I could carry that thought out, staff came to me wanting to talk.

” I am afraid this is not working out. With Al’s mentality and his attitude changing I think he would be better off somewhere else.” I agreed and thought how easy she had made my own speech for me.

What I didn’t know is just in the changes he had already made it was going to be a little harder to care for him at home than I thought. Thankfully, some caring staff members opened my eyes to waivers. I had never heard of these before.

After careful explanations about the several waivers there were I decided on a particular one. The process began but it took three months, so Al had to remain there longer than I wished. The waiver I had chosen stipulated that the patient had to be in a nursing home in order to qualify for this certain waiver.

It was worth it though. When Al came home in June of last year, there were programs in place that allowed Al to still go out in the public with the aid of wheelchairs and ramps. When Al came home he was tired. I could see how much weaker he had become since entering the nursing home.  Part of it was due to being more restricted in a room than the outings and activities that he and I had shared here at home. The other part was the illness.

Chapter 22


The test was scheduled for the next day. Al asked a lot of questions but I assured him it was not going to hurt. I explained how they were just going to take a fancy picture of him. He seemed content with that.

I was there when the specialist arrived. He set everything up and explained the procedure to  Al and me. After the wires were attached he begin doing his magic. When it was all done, the…

View On WordPress

Chapter 22


The test was scheduled for the next day. Al asked a lot of questions but I assured him it was not going to hurt. I explained how they were just going to take a fancy picture of him. He seemed content with that.

I was there when the specialist arrived. He set everything up and explained the procedure to  Al and me. After the wires were attached he begin doing his magic. When it was all done, the doctor showed me what he had suspected.

Al had some brain damage happen from the seizure he had. He said that I should not be surprised if in the near future Al would begin to show Parkinson’s Disease as it was so strong in the family.

Al didn’t seem to really understand and I explained as briefly as I could. I didn’t want him to get this disease. I had seen the effects of it with three different family members. The specialist unhooked everything and left.

The next day Al was released and we went back to our normal routine of living. I tried to brush the doctor’s words to the back of my mind. Why worry when he showed no signs of it.

About three months went by from that day at the hospital. I started noticing Al was tripping over himself. He fell a few times getting in and out of the truck. I tried telling him to be more careful, to walk slower and not to be in such a hurry, but in the back of my mind, those stored words were starting to surface.

The next time he fell out of the truck was the last time. He not only cut his legs but he was limping. I called the family doctor and made an appointment to take him in. After seeing Al, he sent him to a sports doctor.

The new doctor did x-rays on Al’s legs and he had torn ligaments in both knees. That was the last time Al rode in that truck. We went car shopping and got something that Al could get in and out of with ease.

Nothing stopped for him. The car made it easier but then a slight tremor started being seen in Al’s one hand. It went from there to the upper arm and then on the same side the leg started to twitch.

Once again I called the doctor. After checking him he thought it best to send Al to a neurologist. He told me he was pretty sure Al had Parkinson’s Disease. I smiled at Al as the doctor spoke but inside I was screaming, no, no, no.

The appointment took a couple of weeks. In the mean time Al didn’t have the tremors too often. When he did have them I could see they bothered Al. He always told me he was trying to get them to stop but he couldn’t.

I started researching this nasty disease. Although I had been familiar with the word and had seen some of what it can do, I needed to know more. I didn’t like what I read. I kept reading the same thing over and over, no cure and gets gradually worse. The worst I read was there was no cure and Al could suffer for years with this.

Upon arriving to the appointment he had Al do different tests. Strength and walking, squeezing fingers, and gait. The doctor diagnosed the final words Parkinson’s Disease. He explained about exercise and how Al could benefit greatly from it. He explained how the tremors may spread from the one side to both sides. He said the head could shake or the lips tremor.

I shook his hand and thanked him for the insightful information. Everything was going to be different from now on. My family members had terrible tremors and one of them ended up in a wheel chair. I was going to make sure Al lived life and had as much fun as he could possibly have while he could.

There was nothing really prescribed for Al at that time. There were no special changes that we made. We just waited and dealt with what he was given each day. The tremors did continue. They moved from the one side to both sides.

He didn’t have the lip tremor and he didn’t drool. Other than the shaking of the hands and legs he led a pretty active life. I continued to allow him to go to his adult day care. I wanted him to not have to think too much about the doctor’s visits.

He was scheduled appointments every six months to see if the disease was progressing. Only then did we actually voice the word Parkinson. Al still went on the outings and seemed to be having a good time.

I then started hearing him complain about his hands. I had noticed they were shaking a little stronger than in the past. He was mad because he was beginning to lose control over them. He was beginning to spill things he was trying to hold.

I noticed that he would sit on his hands to get them to stop shaking. For some time that did seem to help. The more he seemed to struggle the more I began to spoil him. I took him  out to eat all the time.

We went to the flea markets and shopping. What ever clothes he wanted I tried to buy. We looked for coca cola items even harder. Life was still pretty good when I look back at it now.

He then began to complain of chest pains again. I took him back to the heart doctor and his exam showed him that Al was just stressed out from the shaking. He started prescribing calming medications. Before too long had passed, Al was on Parkinson’s medications along with antidepressants and also  the calming medications.

Feeling The Love


Maybe when you are more within your walls you stretch farther for the little joys. Or it could be that since my father passed my faith has grown. What ever the reason I cried tonight. Not because of sadness, but because of love and joy.

Al has really been struggling with tremors. One of the  differences  between Parkinson’s Disease and M.S.A. with tremors is that with PD, tremors tend to fade away in the final stages. With M.S.A. tremors become worse.

This is where Al is right now. Brushing his teeth is a good example. Try to picture this. The battery operated toothbrush is loaded and running. It is in your hand. Your hand is in mid-air. The tremors are so bad that the toothpaste is being shaken off the toothbrush, and the hand can not be stopped. Therefore the once independent act of brushing your teeth is now over. You cry because you are so embarrassed. You can remember when you always brushed your own teeth with no one’s help. This is just one of many things that Al struggles with.

But today, although he had bad tremors all day long, he still thought of me. Through stuttering and a very soft voice he was trying to explain to  me that with the help of school teachers in Day Program he had made me a gift.

A gift? for me? from my brother? Oh wow, I was excited and I did nothing to hide my excitement from him as I dug into his back pack to find the prize. When I pulled it out, Al raised his head just long enough to see my face.

I beamed at him and I put my arms around him and told him, ” I love you so much Bud. This is the best gift I ever got. I will treasure it always and I will put it where I can see it every day.”

I saw a slight smile. I meant every word I said to him, I will treasure it.

 

Open your eyes that you might see

What God has gifted you and me

It doesn’t have to be a three-story house

It can even be smaller than a little mouse

For although the body can no longer move

The heart is still feeling and in the groove.

Written by , Terry Shepherd

08/20/2013

Here is what he made me today.

dream

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

book4