Tag Archives: parkinson

Darn Body, Darn Parkinson

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Today was and remains Christmas  for about  five more hours .  I have been visiting  my son and his family since Halloween  and will be  returning  home New Year’s  day.

It has been fun and came with challenges  as is expected  when you  have  any  extended  visit. The most fun was watching the kids play, hearing the baby giggle, listening to homework  being done, and remembering  back to those days with my own kids.

I have been able to visit with friends and have many laughs and talks about old times. The weather has been good to me. There was only one day so far, that was pretty  cold.

The bad things that happened  were internal with me. The internal tremors  are slowing me down .  My legs hurt and ache so much quicker  than six months  ago .  My stomach tremors and causes stomach aches and loss of appetite .  Parkinson  makes me more tired than before. I feel like one of those nineteen eighty  toys, weeble wobbles. I get pretty unsteady  and one day here, I  actually  fell, bending over trying  to find something .  I  hate bending over, even for a dishwasher .

Trying to fix the goodies that I  have  done for years, plain wears me out. I make one thing and I  have to rest for a bit before I  start fixing something  eles .  This year I used a couple  of days to fix things for Christmas  meals. It doesn’t  hurt to do this. It just  makes me recognize  I have that invisible  illness.

Tomorrow  my daughter and my other son’s  families will be here and we shall all celebrate  together . I’m  going to do my best not to look lazy, but I  am just drained, and  my body is worn out.

I hope all of you  are enjoying  your  Christmas  holiday. Hugs, me.

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If Anyone Is Interested, M.S.A.; A Terrible Disease

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Al July 4thAl on SundayAl smilingAl's car 1alvin graduation picturealvin and meBlue_candleanimated-candles1.gifcandle-animated.gif

For those of you who follow me I thought maybe you would like to know a little bit about M.S.A. This illness is what my brother, Al has. It is not a fun disease, as most aren’t. This disease shortens the life by years and affects so much of the body.

I have spoken about it but it is a rare disease, so I thought I would share with you what I have learned.

 

Multiple system atrophy

Multiple system atrophy (MSA) is a rare condition that causes symptoms similar to Parkinson’s disease. However, patients with MSA have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating.

Causes

The cause is unknown. MSA develops gradually and is most often diagnosed in men older than 60.

Symptoms

MSA damages the nervous system. Symptoms can include:

  • Face changes
    • “Mask” appearance to face
    • May be unable to close mouth
    • Reduced ability to show facial expressions
    • Staring
  • Difficulty chewing or swallowing (occasionally)
  • Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
  • Dizziness or fainting when standing up or after standing still
  • Frequent falls
  • Impotence
  • Loss of control over bowels or bladder
  • Loss of fine motor skills
    • Difficulty eating
    • Difficulty with any activity that requires small movements
    • Writing that is small and hard to read
  • Loss of sweating in any part of the body
  • Mild decline in mental function
  • Movement difficulties
  • Muscle aches and pains (myalgia)
  • Muscle rigidity
    • Difficulty bending arms or legs
    • Stiffness
  • Nausea and problems with digestion
  • Posture difficulties: may be unstable, stooped, or slumped over
  • Slow movements
    • Difficulty beginning to walk or starting any voluntary movement
    • Freezing of movement when the movement is stopped, unable to start moving again
    • Small steps followed by the need to run to keep balance
  • Tremors
    • May become severe enough to interfere with activities
    • May be worse when tired, excited, or stressed
    • May occur at rest or at any time
    • May occur with any action, such as holding a cup or other eating utensils
    • Finger-thumb rubbing (pill rolling tremor)
  • Vision changes, decreased or blurred vision
  • Voice and speech changes
    • Difficulty speaking
    • Monotone
    • Slow speaking
    • Voice is low volume

Other symptoms that may occur with this disease:

Exams and Tests

Your doctor or nurse will examine you, and check your eyes, nerves, and muscles.

Your blood pressure will be taken while you are lying down and standing up.

There are no specific tests to confirm this disease. A neurologist can make the diagnosis based on:

  • History of symptoms
  • Physical examination results
  • Ruling out other causes of symptoms

Testing to help confirm the diagnosis may include:

Treatment

There is no cure for MSA. There is no known way to prevent the disease from getting worse. The goal of treatment is to control symptoms.

Anticholinergic medications may be used to reduce early or mild tremors. Levodopa may improve movement and balance.

Carbidopa is usually added to Levodopa to reduce its side effects and make it work better. However, for people with MSA the response to medications may be disappointing. Many people respond poorly to treatment with anticholinergics or Levodopa.

Medications that may be used to treat low blood pressure include:

  • Beta-blockers
  • Fludrocortisone (Florinef)
  • MAO inhibitors
  • Vasoconstrictors (midodrine)
  • Vasopressin

A pacemaker that is programmed to stimulate the heart to beat at a rapid rate (faster than 100 beats per minute) may increase blood pressure for some people.

Constipation can be treated with a high-fiber diet and laxatives. Medicines are available to treat impotence.

Outlook (Prognosis)

The outcome is poor. Loss of mental and physical functions slowly get worse. Early death is likely. Patients typically live 7 to 9 years after diagnosis.

Possible Complications

  • Progressive loss of ability to walk or care for self
  • Difficulty performing daily activities
  • Injuries from falls/fainting
  • Side effects of medications

When to Contact a Medical Professional

Call your health care provider if you develop symptoms of this disorder.

Call your health care provider if you have been diagnosed with MSA and your symptoms return or get worse. Also call if new symptoms appear, including possible side effects of medications:

  • Changes in alertness/behavior/mood
  • Delusional behavior
  • Dizziness
  • Hallucinations
  • Involuntary movements
  • Loss of mental functioning
  • Nausea/vomiting
  • Severe confusion or disorientation

 

On That Friday Afternoon

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I have sort of stayed a way from WP the past two days. I began writing today. I wrote a couple of posts so that I could ease into writing this one.

People always told me that God will reveal everything in his perfect time. I remember just a short time ago when I blogged about the cross necklace appearing in my hand when I was awakened by something urging me to wake up. I know how it got there. It could have been no one other than God. That necklace had been in my jewelry box for almost two years.

Do you remember me telling you that Al was to go to a new Neurologist on this past Friday? I didn’t really want him to go. We had a neuro for some time and I was content with his words that he had done everything he could for Al, but he would remain a PRN doctor, as needed.

The weekend that Al had tried to harm himself the Psyche doctor wanted Al to have a second opinion. To say the least I fought it tooth and nail. What a waste of time I thought. But after speaking to a friend about it, I was reminded that it couldn’t hurt to have a second thought from another professional with many more years experience on him.

Well I met Al over at the doctor’s office Friday afternoon. I hadn’t remembered it but we had seen this doctor  not long after Al had his heart attack. The doctor remembered Al and let us know we had been there prior.

He had so many reports from doctors and ER visits plus Al’s visit prior. He did a thorough exam and then asked me to come to his office. He left Al sitting in the waiting room while the two of us spoke.

He told me he had suspected Al had PD way back when and was amazed at how Al had declined in these few years. He added some more information to Al’s file and diagnosis and then asked me when Al was coming home. He asked me lots of questions.

When it was all done and the room became quiet, he began writing. He handed me one script. He added that there was no medications to give Al as there was nothing more to do. When I took the script from him and read it said, flashing starHospice to be involved. High risk of aspiration.

I looked at him and said,” I have tried to get hospice involved before, but they always say the same thing, there is no ending date for Parkinson’s Disease.

He looked at me and said, “now there is.”

Silence filled the room and I stared at him. He said, “Al is pretty bad. His heart has taken a big toll. I have all of the reports here that confirm it. His central nervous system is out of whack. His next step will be aspiration. You need Hospice now.”

“But you must have six months or less before Hospice will take over.”

“He does have six months or less.”

Tears filled my eyes and I sat there weeping until I could go get Al with dry eyes. As I pushed him out of the office and down the long ramp, everything became clear. God was revealing to me so many things.

1. Al went to the nursing home so I could have a break. God knew that now Al could come home because I have had enough rest I can carry this out to the end.

2. I knew exactly why I had taken the foolish move to Florida. It was for Al, I was able to give him some of his best years of his life doing things he had never done before.

3. I had tried so hard to get a job but couldn’t land one for the life of me. Now I saw, my time will come to work, I need to be here for Al for a while longer.

4. The heavy sweating, the constant tears, the struggling to eat and swallow. The internal tremors, the trips to the ER, everything became clear.

God has been letting me know by all the signs that he was going to take Al home. God knows that Al doesn’t want to die at the nursing home, so now he has perfected the timing and is sending him home. Everything is clear. I can see God’s plan.

Friday of this week Al comes home. He will get his wish and be able to stay here for the rest of his life.

The doctor, specialist, that I fought so hard to not go, was something God knew that I needed to do. The questions that I had asked for so many months, God knew that I would get all of my answers on that Friday afternoon.

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.

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