Parkinson's Disease Tulip


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Old 08-26-2006, 11:38 AM #1
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reverett123 reverett123 is offline
In Remembrance
 
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reverett123 reverett123 is offline
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Default Never hurts to have a spare...

I have taken the liberty of starting the Yahoo group noted in my signature below in case BT 2 disappears without warning. The group will be unmoderated until further notice but everyone is welcome to use it. Bookmark it just in case you need a spare.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 08-26-2006, 02:48 PM #2
Jaye Jaye is offline
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Ridk,

I haven't thanked you properly for letting so many of us take refuge in your White Rats group. So thank you wholeheartedly.

I have been trying to think of some ways we could all share information without trying to convince anyone of the One True Path, something I used to do a lot until I realized that I have unusually brilliant MDs, lucky me, though I suspect I still do it, for which I apologize. I'm feeling pretty crappy this weekend, though.

I respect the White Rats' right to follow their own lights on treatment of PD, along with being very thankful for you taking us in. I guess you must've gotten a little enjoyment from having us. Before I go on sabbatical, I should mention that I've been diagnosed for 6 1/2 years and experiencing symptoms much longer than that, and in that time I've been in at least (they lost coung) eight research studies and two drug studies to help everyone get better treatment, I have done some advocacy work and a lot of one-on-one support for individual PWPs, especially through BT1, .5, and .25 and spirituality, and I have been baking stone-ground whole wheat bread and using other good foods to help maintain my health for about 40 years now. That doesn't fit the concept of a social-element, wait-for-a-cure, passive, alopathic medicine addict, does it? I never used to be without a pocketful of granola, either, LOL.

So...next time I come around I'll try to be more interesting. Lately I've been spending a lot of energy just getting through the day, but I hope to be more able to think when I have hip surgery in October and get off the painkillers, or most of them. If it weren't for those hot meals from friends at church I don't know what we would have done, but probably wear my husband down to dust.

Well, that was a ramble, so thanks again and enjoy everything!

Jaye

Also I plan to take a Reiki class next month.
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Old 08-26-2006, 09:10 PM #3
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Default Yes, I think that's a great idea...

We do need a plan B as it is obvious we took heavy losses in the last round. I was connected well enough to locate a few of you during the blackout, so didn't feel as isolated. I was a Girl Guide, and like the Boy Scouts our motto was "Be Prepared" (or was it "We eat Brownies for breakfast"?) Whatever.

I don't think of this group as a collection of factions:ie White rats, Grey rats, yellow rats etc, but rather an eclectic group all with a common goal -to find anything that will help and share until someone finds the crack in the wall and we can all get out of PD prison. The truth is...we don't know what the truth is. (By the way Rick, when will we be able to order our "White Rats" jackets with our name on the sleeve?) But back to the truth: the truth for me is: if I gave up sugar and other questionable eating practices I'd be a whole heck of a lot better off (and you can take that literally). Another truth may be that when they find the next big break through it may not be the answer for all of us, because I don't think we all have exactly the same disorder. Then what? Personally I think Amgen is sitting on a golden egg. It may not be the only golden egg, or even the egg for me, but we do ourselves a diservice by not doing what we can to make our voices heard. I was really pleased to hear that Peggy and Carey will be on the new patient advisory board. That's a step forward.

Well this has been my first good ramble in awhile. I do find value here, and Rick is right, we should keep our shack out back available for emergencies. Now where's the best place to get a good piece of Chedder Cheese?
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