Wednesday, April 17, 2013

The Beginnings of ' Our' Parkinson's Disease

Illustration of the Parkinson disease by Sir W...
Illustration of the Parkinson disease by Sir William Richard Gowers from A Manual of Diseases of the Nervous System in 1886 showing the characteristic posture of PD patients (Photo credit: Wikipedia)

When my husband was first diagnosed with Parkinson's disease, in 2006, the only really subtle sign that  I had noticed, was when he walked he no longer swung both of his arms. Being a registered nurse I was trained to notice things in people. Richard wasn't bothered by anything at this point. But we went to see a neurologist and the diagnosis was made.

Parkinson's disease is a complex disease of the brain that affects movement and thinking. People with Parkinson's may have tremors, rigidity, stiffness, a mask-like expressions and dementia.  Richard's father had Parkinson's. Some forms of Parkinson's are hereditary and you are more at risk if it is your father who has the disease. But many times Parkinson's is NOT hereditary.

There are no lab tests, no xrays, no screenings that will tell you a patient has Parkinson's disease. The neurologist will look at your medical history and give you a through neurological exam.

The symptoms of Parkinson's, in the beginning can be very subtle and a lot of people will not even notice them. These symptoms usually start between ages 50 and 60. Of course there are exceptions to every disease. The tremor is often the most' associated with the disease' symptom. My husband never really had a pronounced tremor. His was in one hand and in his mouth. He 'quivered' is what I always said. There is also rigidity, or stiffness. This can appear in the arms, legs, face, no neck. There is also a pronounced slowing of movement. Richard spent quite a few years having trouble getting out of his chair and not being able to turn himself in bed. One of the symptoms that has been hardest for us has been the weakness of face and throat muscles. This makes it hard for him to chew and swallow. And his voice has become very soft and hard to hear. He coughs a lot when eating or drinking. Which can lead to inhaling things into his lungs, which can cause pneumonia to develop. We have only had one episode of pneumonia and that was during the time he was in the hospital following his stroke.  Difficulty with walking is a big symptom of Parkinson's. They take very small shuffle-type steps; usually they are bent forward at the waist, and cannot turn around. In the end their movements are 'frozen' and they cannot any longer walk. That is where we are now with Richard.

Some of the less common symptoms of the disease are ones that I found by researching in the library and on-line.  
  • changes in handwriting
  • oily skin
  • increased dandruff
  • constipation
  • changes in urination
  • insomnia
  • anxiety, depression
Richard has suffered most of these symptoms. He was able to take some of the Parkinson's drugs that are available. But they come with side effects and he often would not take them if they were causing him to feel sick to his stomach, to have episodes of vomiting. He does still take a sleeping pill at night or he wouldn't sleep at all. We deal with the oily skin and dandruff with lotions and potions. Constipation is dealt with by changing his diet or using laxatives and stool softners. We are beginning to use medications to help with the anxiety. The biggest battle at this stage of the disease is depression and boredom. We are dealing with those also. Richard has spent many years in denial about the disease. And he has gone through the anger. The 'why me' stage. I think he is now at the acceptance stage.

Next installment will be the Stages of Parkinson's and how we have gone through them. 

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  1. He is blessed that you were able to catch his symptoms, being a RN. It has to be frustrating wanting to use your muscles, but simply not having the ability to. Thanks for the information. I never really knew much about Parkinson's except that Michael J. Fox has it. Praying for you.

    1. Thanks Cristy. I am not sure what Michael J. Fox's type is but my husband is nothing like that. Michael has a strange tic that I have never seen in any Parkinson's patient.

  2. I don't know why it took me this long to realize your husband had Parkinson's. I was thinking all his suffering was due to his stroke. Now I have an even better idea of what you're going through -- for a year during college, I was a "night nurse" for a woman in the later stages of Parkinson's. Except I wasn't a nurse, and I was only 20 years old. She wasn't as fortunate as your hubby, as nobody in her family could/would take care of her and they didn't even bother to make sure she had quality care even though they more than could afford it. They just got whoever they could get for as little as possible. I was way over my head, but I desperately needed the money for college. I would be up all night with her between shaking spells and hallucinations (which may have been from the drugs, I'm not sure). Anyway -- I don't mean to be rambling on -- I admired your strength before, but now I admire you even more for being there 24 hours a day and raising two grandkids! You are truly amazing!

    1. Thanks Kimberly. Yes, the Parkinson's is much more difficult to deal with than the stroke was. He came back after the stroke very nicely, but I am sure it helped speed things up with the Parkinson's. I cannot imagine what it was like for you at age 20 taking care of that lady. Bless you for doing it!

  3. Oh, this is always so hard... for the patients and for the carers. He's lucky to have you, and you, him.

    1. I have been very lucky to have him, that's for sure!

  4. my dad was diagnosed with this last year. He has dealt with everything I read here. Thank you for writing about this. We've just found a support group, which dad enjoys, and it's always comforting to discover that other families are dealing with the same thing. I'm popping in from the a-z, and am a new follower. :-) I think your upbringing as a Quaker is fascinating! Maybe you'll write more about it. from The Dugout

    1. It is a long, hard battle for sure. And there is really not much more to say about my Quaker religion. It is much the same as any other Christian religion.


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