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04-21-2011, 11:23 AM
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#21 | ||
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as many of you know, I am a stage V PWP. It is rare these days that I have an opportunity to be"on" as well as able to use Dragon to dictate these replies.
girija, also known to me as"gorilla", cites exercise, nutrition, voice and speech therapy etc. examples of absolutely essential in the management of movement disorders. As a permanent resident of a retirement home for veterans, I can assure you that all of these therapies will contribute to a better quality of life. When "THE BOOK" is published( hopefully soon} forum members will enjoy reading a number of articles dealing with this topic. Stay tuned! bob c
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Be not by whom the first is tried nor the last to lay the old aside. . |
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| "Thanks for this!" says: | girija (04-21-2011), lindylanka (04-27-2011) |
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04-21-2011, 02:43 PM
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#22 | |||
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We hope "the book" is published soon, also; and I promise it will be ASAP.
Thank you for your continued support - even in your fragile situation you are an advocate of all advocates! Peg 
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| "Thanks for this!" says: | girija (04-21-2011), lindylanka (04-27-2011) |
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04-21-2011, 02:54 PM
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#23 | ||
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Hi Girija,
I am happy for you as you are having the ideal attention that I can't even dream of. My experience is totally negative. cheers Imad Quote:
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Imad Born in 1943. Diagnosed with PD in 2006. |
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04-21-2011, 03:20 PM
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GIRIJA has hit the nail on the head in her statement about a "team approach" in treating Parkinson's. This therapeutic move is spreading like wildfire across the nation.
Some have been using this approach for a long time, such as the Northwest Parkinson's Disease Foundation in Washington state: http://www.nwpf.org/Wellness/Default.aspx They now have a "virtual" wellness (aka online) community along with a well-established multi-disciplinary facility at Kirkland, WA (Evergreen) Including exercise, physical and Occupational therapies, nutrition, mental health treatment, etc. has greatly improved the quality of life of PWP. I am convinced that such an approach is the way to go that would be of great help for even newly diagnosed. |
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04-22-2011, 05:38 AM
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I so agree about the multi-disciplinary approach, but feel that it would just help if all neuros/mds were equal in their understanding of PD. Girija, it sounds as though you have a great MDS. People like this should be cloned and sent out around the world!
Lindy |
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04-23-2011, 10:25 AM
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#26 | ||
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Now, admittedly, I was ready for a metaphorical MDS love affair.
I had just come off a 6-month bad date with a general neurologist who wouldn't have recognized young onset PD if it bit him on his midbrain, was as able to listen cross-gender as i am to translate Heidegger, and was as arrogant as the sun about to be blindsided by an eclipse. The context, of course, was PD hitting me like a train wreck in slow motion and, had MJFF not recommended that I consult an MDS to clarify my self-diagnosis, I would surely be 100% dead by now, lowering disease duration estimates for us all. Sorry, but that is the truth. Here are my great MDS loves, to whom I profess my eternal gratitude: Maria Sangiorgio, Danna Jennings and Diana Richardson. Each have helped in different ways, from diagnosis to treatment, research to education. All have treated me with unwavering kindness and respect, and have given generously of their time. They are the angels on my shoulders, whispering answers and encouragement and hope. So, yes, seeing an MDS is, IMHO, essential. Just my two cents. |
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04-25-2011, 12:05 PM
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#27 | ||
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I have a terrific MDS, very knowledgable and completely without arrogance or pretensions. I have been seeing him for 10 years. He diagnosed me at the local medical school. Shortly after, he left for a more prestigious University where research was a high priority, as it was for him. I fly to see him twice a year and wouldn't trade him for all the general neruos in the world. I am 11 years diagnosed and, I think, still doing great.
For any doctor, but especially for one seen as a result of chronic illness, you owe it to yourself to make sure you are getting the best information and treatment possible. The level of care in many small rural poor states such as mine can be lower than one would hope. That isn't necessarily true, there is a model clinic here but it is the exception. Seeing a properly trained sub-specialist at least on a limited basis could save you from losing precious time. Of course he/she could be a jerk, it happens. If it happens to you find another. The good ones are out there and they can be a wonderful resource. |
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04-25-2011, 10:38 PM
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"Here in this forum where so many people come when they are new to the community and in search of the best information possible, it is important to direct folks, where possible, to the best resources. And, imperfect as the situation is, directing people to Movement Disorder Specialists is essential."
Seeing an MDS is an essential PART of being your own best advocate. It isn't essential, or even positive, for everyone.
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Kimberly M. Fowler Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game. -- Voltaire dx'ed w/Young Onset Parkinson's Disease May 2006 at age 43. Symptomatic since 1997 or earlier. DBS June 22, 2010 dx'ed w/TN on right side 2007. GK x4, last GK 02/2013 |
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