Stories

Gail Revised

Persistence Required

Diagnosed at 47

My story begins about 13 years ago, with a slight head tremor. I never really gave it a second thought and my life went on. As the years rolled by I then developed a right hand tremor that I noticed while eating or resting or writing. Thinking it was nothing, I didn't see my doctor for it. Then with my annual check up I mentioned it and was referred to a local neurologist. Then I was 37. The neurologist said it's not Parkinson's, "it's because you're getting older." I didn't feel old at 37, but nothing was done. As time went on the stiffness set in and the overall body ache. When I couldn't sleep because of the pain, I knew something was wrong. Nine years went by being told it was anxiety, stress, depression, all in my head, and the like before something finally changed.

I told myself this was the year for ME. I have always prided myself in taking care of my husband,children and grandchildren the best I could...and this time it was my turn. Neurologist #2 discovered a brain tumor....but not the kind that would cause these symptoms. Medical history showed that I had two uncles who died with Parkinson's. THIS doctor thought that's what it might be. In the midst of all this turmoil, depression set in. Bad enough to have been put on anti-depressants. Another referral to confirm the diagnosis with Dr.#3. Who very kindly said "it might just be Parkinson's". My own private doctor.still wasn't convinced. "One more doctor," I said, "And that's it, I'm done." After almost 10 years I had had enough. The doctor I have now is a sweet joy! She treats me like a person and not just a paycheck or guinea pig for the pharmacutical companies.

Hello my name is Gail and I have Parkinson's. Being treated the way I should have been almost 13 years ago. I live every day the best I can and love all those who are in my support network for dealing with me through the tough times. Some days are worse than others but I will survive. Good luck to all of you out there. You are in my thoughts, and I wish you all the best.

3 Comments

I would like to add a few things: I am currently on Mirapex and Azilect which I seem to tolerate well but I still have "off" days where it doesn't work so good. I also turned this negative thing in my life into a positive by fundraising for Parkinson's Research. It is both inspiring and enriching to be an advocate for a cure for Parkinson’s Disease.

Gail, Aug 26, 2011

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I'm surprised by how common misdiagnosis of this disease is in young people. Complaining of problems in his left arm, my husband had invasive surgery that involved inserting a metal plate into his neck. The stress of the surgery only made his symptoms worse. The doctor referred us to a nerve specialist for "possible ALS" which really scared us. I did some research and we essentially diagnosed my husband with young-onset Parkinson's at age 38. This was confirmed in a 20 minute examination by a movement disorder specialist. I hope more doctors are getting that just because someone is relatively young, does not mean they don't have Parkinson's disease.

Tamera, Oct 5, 2011

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I told my story online at the University of Florida's Digital Worlds' Institute's LiveVibeTV.com Season 1, Show 4, Act 3. My hubby & I appeared at minute 43 or so.

I was invited back. I reported on my Levodopa Carbidopa Intestinal Gel Pump on LiveVibeTV.com Season 2, Show 1, Act 3.

Our Facebook page is "People Fighting Parkinson". We are trying to get to the "nitty gritty" of our Parkinson experiences issue by issue. I am just trying to get to the point where more PFP start participating. Technical issues are tough without computer expertise & with hands that don't always cooperate.

i.e. At evert support meeting I attend; PEOPLE are seeking help with foot dystonia. The standard "doc answer" is botox. I did that once, a couple of years ago. I didn't need my foot more disabled 24/7.

We have found many more components to solve foot dystonia & other problems. MDs "foo foo" massage therapy & Reiki. It is beyond their knowledge. No one person can be an expert on everything. There are only 24 hours in a day. LOL!!! But, we, the PEOPLE, need to become knowledgeable by filtering through the input...each of us with our own good sense & talk with our docs, therapists & caregivers. Subject by subject, we need to communicate coping strategies that "work for me"! Opinion, it's all opinion...

If I read one more book that says nothing more than "buck up"...

Judy Whitmore, Oct 13, 2011

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