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03-22-2011, 01:12 AM | #1 | |||
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Well, hi guys.
How is everyone? It has been a long time, since I've visited this sight. I hope everyone is doing well. I am no longer "waiting" for a cure. My doctor is a researcher. He says that he doesn't think there will ever be a "cure" for PD. They will just keep trying to come up with medications to help with symptoms and maybe slow the progress of the disease. Of course, he is the same man who told me that my symptoms were "just a nuisance" and just wait, they will get a lot worse. Sometimes, you just have to laugh. Do something incredibly fun for yourselves. I am going to start a bucket list of all the things that I want to do and begin checking them off. Love to all, Mary Frances |
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03-22-2011, 05:49 AM | #2 | |||
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In Remembrance
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God bless you sweetheart... do you believe in miracles? I have seen so many from eyesight brought back - to me still walking but I need pain med for sciatica, it will come from God, that is not nice or true to tell you that - remember doctors are people - and people are flawed, and we need to not take those words to heart = very hard not to - I am praying for you /mary love tena
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with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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03-22-2011, 06:59 AM | #3 | |||
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In Remembrance
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Some of us are still here, along with some sharp new minds as well. How have you been? Judging from your photo, you haven't changed a bit!
-Rick Quote:
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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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03-22-2011, 02:23 PM | #4 | ||
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Senior Member
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That he doesn't think there will ever be a cure for PD makes me think that, if he's right, the cure lies within each of us, then. There is always a remedy to a problem, although it may be hard to figure out or sometimes it cannot be obtained (example: someone needs a new kidney, or lung, or whatever, but is too old/otherwise in bad medical shape to get on the donor list). All we need to do (so simple-sounding, I know) is to find what works for each of us. Since we all present so very differently, progress so individually, and respond differently (and often unpredictably) to the PD drugs, perhaps what we need to be doing is creating our own cocktails. Exercise and low stress, of course, but experimenting with supplements, foods, etc. might be our answer. As we all know, what helps one doesn't necessarily help another, and often might make things worse. We already do this on our own, here on the forum, and thank heaven for the white rats here who share their results with everyone here. |
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"Thanks for this!" says: | imark3000 (03-23-2011) |
03-22-2011, 04:00 PM | #5 | |||
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Senior Member
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hey Mary Frances -
Your doctor is being frank - but I think the message is optimistic rather than pessimistic. They've learned enough to finally understand that they don't know what PD is - and now are spending time trying to figure it out, and, in the process, will hopefully discover better and more targeted treatments. Looking for one, full spectrum answer has been a waste of time - they are making progress!
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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"Thanks for this!" says: | Conductor71 (03-22-2011), moondaughter (03-23-2011) |
03-22-2011, 05:27 PM | #6 | ||
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For nearly 5 years they consistently told me with a superior smile of some body who knows better meaning: " Come back in 6 months, and you will be in a state when you will be begging for our medication".
They would be disapponted to know that I have not reached this point yet instead of being happy for me ! Imad
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Imad Born in 1943. Diagnosed with PD in 2006. |
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"Thanks for this!" says: | Conductor71 (03-22-2011), krugen68 (03-23-2011) |
03-22-2011, 07:32 PM | #7 | |||
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In Remembrance
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I've been reading a bit on "psychogenic" illness and thinking about how it might relate to PD. I must admit that many of the possibilities made me uncomfortable as I tried to be objective. Maybe each of us create our own version of PD.
[Psychogenic illness is self-created but it is real. Examples: someone worries himself into a heart attack or ulcer] Quote:
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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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03-23-2011, 05:37 PM | #8 | ||
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Member
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Hope and optimism are necessary for healing. If you believe that deterioration of your sickness is inevitable as some neuros will tell you, you reduce your chances of overcoming your symptoms and feeling good which is the essence of healing.
It has been reported that cancer patients who are told they would die in 6 months actually die soon enough. Cancer patients who are not told this piece of **** live much longer and may heal “miraculously”. Imad
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Imad Born in 1943. Diagnosed with PD in 2006. |
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