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26 replies to this topic

#21 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.

#24 neon man

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Posted 23 March 2016 - 10:00 PM

I've lived with PD for 25 years now... shouldn't I get a gold chip or a diamond or something?

 

I have gone for the surgical option and have had a thalomotomy, two palllidotomies, the DBS, repositioned the DBS and an aborted brain surgery where they drugged me up with ketamine and the surgeon and the neurologist got in an argument over how close was close enough while I yelled up from the well I imagined I was in "I CAN HEAR YOU"! Ah yes, fun times....

 

I am on no meds, not because I'm a purist or golden child or anything. they just don't work on me... the side-effects do work however.

 

What I live for (aside from my family) is my art, and I just got short-listed for a large public art project. Go me! I do the designing, budget, computer compositing, scheduling and oversee the installation. I hire metal workers, plastics people, glass benders and digital printers. It's a case of do what I can and farm out what I need to.

 

neon man


  • ellaangel2 likes this

First symptoms 1990

 

Thalomotamy 1994

Pallidotomy 1995

Pallidotomy1996

Diagnosed 1996

DBS (both sides) 2002

DBS reposition 2004

Current age 58

 

NO MEDS!!!

 

Website for artwork www.neonart.info


#25 J of Grey Cottage

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Posted 23 March 2016 - 10:28 PM

Yes, neon man, I'd definitely vote for giving you a nice large diamond!  You still have such a wonderfully positive attitude after 25 years!  I feel energized just reading about all the things you are doing.  Keep up the good work!

J


  • neon man likes this

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


#26 neon man

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Posted 24 March 2016 - 06:11 AM

Yes, neon man, I'd definitely vote for giving you a nice large diamond!  You still have such a wonderfully positive attitude after 25 years!  I feel energized just reading about all the things you are doing.  Keep up the good work!

J

From the inside my attitude looks pretty ordinary, but thanks for the response!!!


First symptoms 1990

 

Thalomotamy 1994

Pallidotomy 1995

Pallidotomy1996

Diagnosed 1996

DBS (both sides) 2002

DBS reposition 2004

Current age 58

 

NO MEDS!!!

 

Website for artwork www.neonart.info


#27 radmatty

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Posted 11 May 2016 - 10:18 PM

... the doctors we have been to have a "there's nothing you can do so come back (worse) in a year" approach. As I am a doctor too, I resent that attitude, so we will keep looking. ...we've been reading, researching and learning all we can to beat this thing, together.

 

Those sentences capture my attitude perfectly.


2000 - sense of smell affected

2006 - right hand starting to slow at typing

2009 -  first notice tremor in right-hand

2011 - tremor spreads to right leg

2014 - tremor makes writing difficult to impossible

2014 - diagnosed essential tremor

2016 - diagnosed PD





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