Tag Archives: Neurological disorder

Help Others as We Help Ourselves

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I haven’t been on the computer too much in the past week. I was with a friend who was also a patient for surgery. After the surgery, I was helping with daily needs as the surgery was on the arm.

I almost forgot what it was like to help someone in person. I had over twenty years caring for the sick and aging. After caring for Hospice the last five years and then caring for my brother and my father during their terminal illnesses, I have only cared for myself these past few years.

It wears you out! How did I do that for so many hours and years? Maybe I was just younger and of course I didn’t have this neurological illness then. I always had this thought. God gave me the experience to be able to care for my brother and father in their homes instead of nursing homes and then when they both passed, my job was done.

It seems all in perfect timing to me, except the part of now I am the one ill. I wish sometimes that I had the family member to help me, but with my experience, I am able to care for myself for now.

Have you ever had to care for someone? How long was it? What were your duties?

Multiple System Atrophy, Leukemia and Parkinson’s Disease

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Ever since I received my diagnosis of Familial Tremors, I have thought back to my father, brother, uncle, my father’s mother and her sister. There has to be some connection right?

Books used to say Parkinson’s wasn’t hereditary; but I beg to differ. My parents brother, me  and uncle all lived on the same property. They eventually built a new house down the road with the same environment. We all lived surrounded by trees, cornfields, and electrical towers.

Don’t you find it mighty strange that a disease like Leukemia would hit 2 people within a year of each other? Doesn’t it seem very likely that since my dad, his mother, her sister, Al and myself all have Parkinson’s Disease? Even stranger is my father had Parkinson’s and Multiple Myaloma and Leukemia; all at the same time.

I did some research this evening. I found some things but not much. I would very much like your thoughts or input on this topic.

What I found online is; and if you are interested; please take the time to click on the links and read.

 

http://emedicine.medscape.com/article/1154583-differential

 

 

http://www.medicalnewstoday.com/articles/161727.php

 

 

http://www.medicalnewstoday.com/info/parkinsons-disease/

 

 

http://www.toxictorts.com/index.php/occupational-diseases/motor-neuron-disease

 

 

http://www.bio-medicine.org/q-more/medicine-dictionary/multiple/

 

 

http://sylvester.org/cancer/leukemia-lymphoma-and-myeloma/education/definition

 

 

dad

 

 

 

A Hidden Road, Being A Caregiver

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indiana sayingDo we really know our hearts? Do you or I have an inkling of who we are and how detailed we are made? We are magnificent creatures.

Each of us, having been designed with some hidden talent, just waiting to show the world. I was one of those for years that didn’t know I had a talent. I was brought up to never praise myself in front of others; to do this would be considered bragging.

I was not aware that some talents do not involve actors on TV or singers or playing the piano. It took Word Press for me to finally get it through my head that my hidden talent was caring.

Sounds pretty dull doesn’t it? It doesn’t get bring me stardom, so I will never be rich from it. No one notices outside of those who know who I am. But caring for others replaces the “Me” thought and places it on he or she.

I used to think over twenty years ago that being a caregiver was a piece of cake. I wasn’t in a factory. I wasn’t outdoors in the freezing weather climbing poles. I was inside a warm house, sharing meals and conversation with strangers.

Strangers is such a short-lived phrase. It doesn’t take long at all when you sit and listen to the patient talk that you are drawn into their earlier life. You learn to feel their dreams, and cry with their regrets of growing old and dying.

Yet not everyone can be a caregiver. It is one of those jobs that you best not take it if you are doing it only for the money. Care givers work from the heart for the most part. The physical load I carry is much less than the broken heart watching someone you love or respect or maybe both get worse and die.

Once I discovered the hidden path that makes up me, Terry, I was more content. I was never ashamed again to speak up and admit I am a caregiver, not “just” a caregiver. It is a proud position and I thank God that he chose me to do this type of work for him. When he made me, he put all the right ingredients and he knew I would not fail him.

I have taken care of strangers and I have taken care of family. Of course family is the most difficult by far. More love and emotions, strings attached from years gone by are naturally attached.

Now I deal with Multiple System Atrophy. There are days I cry. There are times I wish it was over. There are moments where I am beat and just want to sleep, but I always go back to the patient, who for me now is my brother, and I look at how brave, a real warrior, he is.

For I have only sat on the side lines and looked through the window and tried my best to understand how he feels. How can I possibly do that? I don’t have this terrible disease. He is the great and mighty fighter. He has fought greater wars than I have my entire life.

Each day when I hear his breathing as he struggles to get in that wheelchair  one more time I feel his will to live. Each day as I see him with fork or spoon in mid-air, and realize that inside he is telling his hand to continue to move towards the mouth, I weep.

The brain is not affected with M.S.A. Al remembers very well that he didn’t used to wet his pants. He remembers driving and working. He remembers having time to himself doing the things he enjoys.

Every second he is awake he is never alone. How humiliating it must be to have your own sister bathing you, changing you, feeding you, but he never says a word. I will ask him if he is enjoying his bath and he will say yes but then begin to cry.

M.S.A. sucks and any of us that are affiliated with it know this. But for my brother, he is a warrior, and for me, I have discovered that hidden road, that secret that was kept silent for so long; until I started to blog

purple candlesAl on SundayM.S.A. logomsa logobook4caregiver

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M.S.A. ( Multiple System Atrophy)

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I can see your dirty work

Taking more of his soul

Holding his feet with weights

Letting him move no more

You can’t begin to know

What you are doing

To his emotions

As you slither your

Way as a snake crawls

In tall grasses

Not only have you

Taken his strength

You have stripped

His hope

You have caused

Nothing but

Sadness and grief

You will not stop

You will continue on

Until you have sapped

The last breath he has

And he lays down

Never to return.

Written by,

Terry Shepherd

08/15/2013                                                                          Brother Sister Love

The Hospice nurse told me this morning that pain medications have to be increased. The M.S.A. is being aggressive now, taking what ever Al has left to fight with. Al has not been able to move his feet to transfer now for almost a week. Last night when I put him to bed he cried and told me,” I can’t fight anymore sis. I am tired and sick of being sick. Just throw me a way.”

What is Multiple System Atrophy?

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s.  Although what causes MSA is unknown, the disorder’s symptoms reflect the loss of nerve cells in several different areas in the brain and spinal cord that control the autonomic nervous system and coordinate muscle movements.  The loss of nerve cells may be due to the buildup of a protein called alpha-synuclein in the cells that produce dopamine, a neurotransmitter that relays motor commands in the brain.

Is there any treatment?

There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments available to help people cope with some of the more disabling symptoms of MSA.

What is the prognosis?

The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.

Weekly Photo Challenge, Theme of the Week

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catching-fly-12919722I spend a lot of time at home. I admitted yesterday on a post that I wrote that I can get deep into my zone by cleaning. Yes, I know it still sounds just as crazy today as it did yesterday.

But, I will have to let you in on a little secret, I don’t get off on cleaning the entire time I am at home. Sometimes I will bake some cookies and take them in for Al to munch on. But that idea is fading a way. Most times when I go in now and check his drawer of sweets, they are still sitting there.

The day I see that Al has not touched Pop Tarts, one of his favorites, I know the Parkinson’s Disease has truly consumed him. They are still sitting there unopened.

Sometimes I like to get on U Tube and listen to songs. If I think they are pretty awesome, I will transfer them to my web blog, Music That Calms The Soul. There are other times that the stress of Al and the sadness he endures just plain old makes me tired, and I will nap my afternoon a way.

But, now, I have someone else to keep me company. Rhino, my 25 pound cat. He is so fat and I have to say lazy, that if he wants something; it has to come to him within paw’s reach.

Last night he shocked me. I heard my antique bells on the front door. My first thought was that my son’s children had sneaked in to surprise me. I flipped around from my computer desk and lo and behold it was Rhino.

The flies must have really gotten on his cat nerves. He had tried to attack them through the screen. Luckily for me he didn’t indent the screen. He just knocked the front door back a bit and made the bells ring.

Gee, I hope he doesn’t find this entertaining and learn that he can make bells go off and make my own bells go off in my head. It was a quiet night. I had Mash on the television in the background. It was just Rhino and me.

I didn’t realize it but for at least a half an hour I watched and waited for Rhino to do his magic act and let me see him in motion. This is something I don’t see often. He either meows for wanting to be petted, or he is eating.

Even you can get some joy from this. As Ma says in the Golden Girls Sitcom, picture it, 2013, a very quiet house. No noise but the keyboard and Mash. Bells go off and as I flip around I see a 25 pound flying cat doing the disco song to , I’m gonna get you nasty fly.

http://dailypost.wordpress.com,Weekly Photo Challenge ,“postaday″

A Visit With Al

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al's birthday partyToday I went to see Al. He was hard to wake up for lunch. It took several times calling him then finally an eye opened. He never even knew I had been sitting there for sometime. We had lunch together and then they weighed him.

He has lost another six pounds. The nurse said this wasn’t bad at all. I tend to disagree with her. How many weeks is he going to continue to lose a few or more pounds a week before they do anything. Or is there anything to do about it.

He only cried once during lunch which I thought was real good. He cried while he told me some new staff was working. They were in his room and the experienced staff were telling him some things so that Al would continue to get good care.

Al said,”They were talking about my past. Everyone wanted to know all the bad stuff about me. They even told them that I wet in my pants.” I explained that they were just informing the new girls of important things about him so he wouldn’t have to stay in wet pants very long.

He didn’t like it so I asked the girls if they could discuss things about him out in the hall where he can’t hear them. Al has always been so sensitive about himself. He isn’t proud that he wets himself or spills food or any other thing that he didn’t used to do.

I wish there was some type of brace to hold Al’s chin or head up. Today I swear his chin was an inch from his plate. He still struggled to get food in his mouth. He ate his whole meal in this position. It makes my neck hurt just seeing his drooped. I guess this is part of the Parkinson’s Disease.

He went out on an outing after lunch so I hope he had a good time. I talked to the waiver people today and the guy told me he was hoping to have all of Al’s data entered by Friday afternoon. I am to call back and check on Friday, late. He also said that once the State received it they legally have 45 days to sign it but it could be back in a week’s time. So I just reminded him that we had been working on this since the beginning of March, so this is why Al is so upset. The guy asked me why I don’t put him on antidepressants. I said, why, he is only sad because he isn’t home yet. Silence, and then call me back Friday. I will for sure, he can bank on it.

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