Saturday, September 26, 2009

Parkinson's Disease

Here's an interview with Shari Lyle-Soffe, an author I recently met.

Janet: What is your condition called and what caused it?

Shari: Like Michael J. Fox I have Parkinson’s Disease. Michael’s is more advanced than mine. I was diagnosed a couple of years ago but I suspect I have had symptoms for a number of years. I think they are still looking for the cause. I don’t think it is hereditary but more likely environmental in nature. My stepfather and my brother both had it and they were not blood relatives.

Janet: What changes were made in your life because of it?

Shari: Initially I lost my sense of smell. I really miss it. My home is surrounded by lilacs, honeysuckle, jasmine, and roses, I can’t smell any of them. The upside is I can’t smell the skunks either.

I also have tremors in both hands. At first I worried that I wouldn’t be able to continue my writing for children, but so far I can still type and if I couldn’t I would look into voice activated software. I also have balance problems. It is getting harder to walk because Parkinson’s is a neuromuscular disease that effects movement. In addition I have Arthritis in my back and a collapsed vertebra. Together they prevent me from lifting things and doing a lot of walking. I am lucky to have an able bodied husband.

Janet: What things, other than medical treatments, have helped you deal with it?

Shari: My faith in God is foremost. Exercise and healthy eating also help. I lost 16 pounds and I hope to lose more. Attitude is very important. Instead of looking at what I can’t do, I try to concentrate on all the wonderful things that I can do and they are many. I try to keep an attitude of gratitude.

Janet: How has this condition influenced your spiritual life?

Shari: It has strengthened it. I know God is with me in this and everything. I am counting on him to get me through whatever lies ahead.

Janet: Is there anything anyone, including those outside your family, have done that was helpful to you?

Shari: People have shown me their love and understanding as I tried to adjust to the diagnosis. My husband is extremely supportive and watches out for me always.

My doctor prescribed a walker for me and a handicap parking permit, they have been very helpful.

Janet: Anything you wish people had done or would do?

Shari: No, people have been very thoughtful and understanding.

Janet: Is there anything else you would like to tell the readers of my blog?

Shari: If life gives you lemons, make lemonade. We all need to look at what we have and decide how best to use it. Nothing is accomplished by the people who quit.

Janet: Thank you, Shari. I hope reading about your experiences will be helpful to lots of people.

Shari's website is http://sharilyle-soffe.com/ (If you go to that page you'll see where I met her.)

For information about her charming books for children and other writing please go to http://rooterandsnuffle.blogspot.com/

3 comments:

  1. Shari and Janet,
    Loved your interview....
    I love your positive outlook on life.
    Reminds me of a little saying...
    Spreading "SON"shine to others...
    Telling Jesus the rest...

    Bravo,
    Dixie

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  2. Hi Shari. Thanks so much for sharing your disability with us. My dear friend and neighbor has Parkinson's, and she has a motorized wheelchair she uses sometimes - good days and bad days. I heard it does run in families, though not exactly hereditary.

    I was able to find some wonderful support groups for her, because she has no computer. I gather gene therapy is the hot new hope for Parkinson's disease, though I guess this will take time. There is a lot of helpful information about it on the internet, if you choose the properly qualified websites - like Harvard Medical.

    Margot Finke -
    Books - Manuscript Critiques
    http://www.margotfinke.com

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  3. Dear Shari,
    Thnaks for sharing this part of your life with us. I think your positive attitude and determination to keep working against all obstacles is truly inspiring!
    I wish you the best, my friend.
    Mayra

    ReplyDelete