Familial Tremors, Essential Tremors, Parkinson’s Disease

This morning I woke to a headache. It was early; around 4am. I immediately tried to ignore it and closed my eyes for more sleep. At 8 I woke up. My head still hurt, but I knew it was time to do my laundry, so I drug my body out of bed, got dressed, changed the sheets and ate, then laundry.

It has been so humid for so many days here. Storms happening day after day. The only hope I have to cling to is the promise from God stating no rain over 40 days and nights. I bet if I counted back, we are getting near that time frame. It is supposed to storm this entire week. I now have an ear ache too.

I imagine the graduation I went to, being outside, didn’t help my ears. Sinus pressure, ever have it? Don’t we just want to toss it out the door? I have to feel better tomorrow or fake it for good.

I have a job, yes, yeah! I went through a government program for Seniors who are disabled and in less than a week I received an affirmative answer. I go in tomorrow to start filling out about two hours worth of paper work. I can’t say with 100% accuracy; but it looks like I will be teaching Seniors how to use a computer.

Exciting yes? Maybe? I am a little nervous. I am used to working with Seniors that are ill or on death’s door. I am not used to working with Seniors that will have wit, and stories to tell, make me laugh.

I have had a good time of playing Doubting Thomas. Can I do it? Do I have enough smarts? On and on I have gone. By the time my appointment nears tomorrow I will have talked myself out of the negativity and will be walking in with my head held high.

I also got a formal diagnosis on my health this past week. I have something from the Parkinson’s family, Familial Tremors. I will say that on July 2, I go once again and see the Neurologist for further evaluations and test findings for an absolute positive diagnosis of no doubts.

Familial tremor is an involuntary shaking movement that tends to run in families. Involuntary means you shake without trying to do so.

Causes

Tremors occur when there is a problem with the nerves supplying certain muscles. They may affect the whole body or just certain areas, such as your hand.

Familial tremor is a lot like essential tremor, except that the shaking affects more than one person in a family. The exact cause of familial tremor is unknown, but the fact that it is passed down through families (inherited) suggests that genes play a role. Familial tremor is usually a dominant trait, which means that you only need to get the gene from one parent to develop the disorder.

The tremors usually start in early middle age, but may be seen in people who are older or younger.

Symptoms

The tremors are usually most obvious in the hands, but may affect the arms, head, eyelids, or other muscles. The tremors rarely affect the legs or feet. People with tremors may have trouble holding or using small objects such as silverware or a pen.

The shaking usually involves small, rapid movements — more than 5 times a second.

The tremors may:

• Occur when you move (action-related tremor), and may be less noticeable with rest
• Disappear during sleep
• Come and go, but generally get worse as you age
• Get worse with stress, caffeine, and certain medications
• Not affect both sides of the body the same way

Parkinson’s Disease and Familial or Essential Tremors are very similar with a couple of differences.

Parkinson’s Disease and Essential Tremor

In Parkinson’s disease, the tremor or shaking usually involves the arms and hands and is most prominent when the patient is at rest. In essential or familial tremor, the hands and arms are usually quiet at rest, but if the patient attempts to perform a task, such as picking up a glass of water or writing, then the tremor becomes very noticeable. Tremor can sometimes involve the head and neck and also sometimes involves the legs. Tremor interferes with many normal activities. Patients may be unable to write their name and, for instance, sign checks. They may be unable to drink from a cup or glass without spilling, and they may be unable to cut food with a knife and fork. In addition, patients may be unable to feed themselves, button clothing, comb their hair, or perform almost any movement that involves coordinated control of the hands, fingers and arms.

In essential or familial tremor, the movement disorder is the only aspect of the disease. The only difference between essential tremor and familial tremor is that in the latter, there is a family history with tremor being present in other generations, whereas in essential tremor, there is not. The actual tremor itself is identical in both conditions.

In Parkinson’s disease, there are often other movement abnormalities in addition to tremor. These may include bradykinesia (slowness of movement) and rigidity or stiffness in the muscles, which make movements difficult. Also, in Parkinson’s disease, there is frequently difficulty with walking because of the slowness and stiffness of movement and because of poor balance and a tendency to fall.

I am having the issue of not being able to write my name very well. I had to mark an x one day last week. Holding a pen is very difficult. My legs have tremors and my internal muscles in the trunk area have tremors.

Sometimes my head shakes too but I don’t notice it too often. My fingers are the worst as far as what I see and have trouble using. If I try to exercise my legs, then the tremors kick in and I look like a fish out of water. It is not pretty, so I am cautious, walking shorter distance. I was instructed to use my cane at all times because of higher risk of falling, which I hate, but I am doing. So far I can still drive and I can still type up a blog post or a story line.

I no there is no cure and I am hoping that since I am so far down the line of this disease; I will not be hit hard with it. Al, my brother had Parkinson’s with his M.S.A. My father, his mother and her sister all had Parkinson’s. Dad was the only one who got Leukemia along with his tremors.

What’s the name of the song? Because he lives, I can fact tomorrow. This is how I am going to live life, one day at a time. I will teach the Seniors, or what ever position they need me in. I will continue to blog and write book chapters and I will still look for that one thing good in life each and every day.

 

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…

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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.