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#21 J of Grey Cottage

J of Grey Cottage

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Posted 07 November 2015 - 10:55 AM

Dr. Ro,

 

Relatively new to this forum, I may be mistaken, but it looks as if no one responded to your post.  I can understand completely your problem with some doctors' attitudes.  When I first suspected PD, I saw two neurologists.  The first one was ignorant of some of the most common symptoms of the disease and told me flatly that I would be in a wheelchair within ten years.  What an unnecessarily and inaccurately devastating diagnosis!  The second one confirmed PD and immediately offered me sinemet, which I declined.  Not until I got to a Parkinson's clinic and later (in another state) a movement disorder clinic did I receive proper treatment.

 

Your husband is lucky to have a spouse ready to fight this long battle with him.  And I probably don't have to tell you, a doctor, that current medications and the slowly progressive nature of the disease make it possible to keep PD at bay for quite a while in most cases.  My first symptoms appeared about 19 years ago, and I am still in the early stage of PD.  I hike, play the piano, and manage my own household since my husband's death over three years ago. ( By the way, our wedding anniversary was September 4.)

 

I do not often check new threads in this forum and am consequently very late in responding.  I just hope that you will look back and find this post.

 

Best wishes to you and your family!


Age:  69

First symptoms:  1997

Dx of PD:  2002

Meds:  Mirapex, Azilect, Carbidopa/Levodopa, Amantadine, Ubiquinol (CoQ10)

Status:  Widow managing own household, still in first stage of PD


#22 Cenepk10

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Posted 17 December 2015 - 11:27 PM

i read your discussion by BASTIAN BLOEM about the man who could ride a bicycle, but could barely walk. i have pd and i have trouble walking, but i can dance and i can do qigong and tai chi. i have been a dancer most of my life and a dance therapist and bioenergetic therapist . in other words, i have had much experience with movement. strange that i would wind up with a movement disorder. i would like to share that although i have had awful experiences trying to sleep and not being able to and being very agitated, even with medicine, though helpful. the practice of qigong, a fifteen minute practise, mainly bending and touching the ground with my fingers and breathing mindfully, i can sleep , and sleep much more restfully. not a hundred percent, but perhaps 80 or 90%. i would like to share this with dr. bloem. s. kossoy



#23 Cenepk10

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Posted 17 December 2015 - 11:30 PM

Oh my goodness! First time on this site. Exercise is so good & 1/2 as I understand of the therapy. Moma did Big Therapy & I thought she was healed for about a month. She has never ever exercised- except for her ver brisk mall walk shopping- She always had an excuse to opt out. She was diagnosed in 2003 - thinks she had it much much longer.




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