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07-14-2011, 04:35 PM | #1 | ||
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Hello everyone. My name is Michele. I am 35 and seen my first movement disorder specialists on Tuesday (after a couple appts with a local neuro) to confirm that they do think it's young onset parkinson's. Moving on course with medications etc. short of writing down parkinson's because of long term care insurance(?). We had come to this conclusion prior to going just was still shocking to hear them give us the speech I'd read about - "this is not a death sentence etc." I had been doing well with the news - and totally hit me just a few minutes ago. Already having those "on and off" moments including the mask face - which my husband told me i had but had never seen it until I just uploaded our pictures from Utah and the picture I thought I was smiling in I was not. Wake up call. Not like the other symptoms wasn't enough.
Sorry to show up and vent! I look forward to meeting you all! Hugs, Michele |
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07-14-2011, 05:08 PM | #2 | ||
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Michele:
Get whatever insurance you can before that word (Parkinsons) shows up on any of your records! We didn't, and my husband has not been able to get long-term care insurance from anyone. Luckily, his progression has been slow (now in his 13th year) so he hasn't needed anything but his medicare and a supplement that he got before his diagnosis. Read everything you can, and above all, exercise as much as possible, since this seems to be one of the things that has kept him as agile as he is now.
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Jo Ann |
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07-14-2011, 05:46 PM | #3 | ||
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In Remembrance
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hi michele,
welcome to the best group of people you wish you didn't have to meet. Here's a welcome video from some of us who have been around for awhile. I didn't realize I had the mask face either till the photos of us at the walk on the big rock. more later. http://www.pdf.org/en/not_alone_DVD
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paula "Time is not neutral for those who have pd or for those who will get it." Last edited by paula_w; 07-14-2011 at 06:10 PM. Reason: spelling |
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"Thanks for this!" says: | Atma Namaste (07-17-2011) |
07-14-2011, 06:23 PM | #4 | |||
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In Remembrance
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Michele-
The question you will be asked is "Has any licensed medical poo-bah told you that you have Parkinson's?" That question gets a yes or no answer. No ifs ands or maybes. If the doc said you might have PD, then the answer is "No". If no medcal doctor has told this then do not, under any circumstances, set foot in a medical office until you have done as well as you can on the insurance. The insurance company will investigate you WHEN you file a claim years from now and deny coverage when you are most vulnerable. Others will only do that in the first "x" years. Mine is through Gentex (formerly GE) and they cover everything after two years. I don't know a lot about them but when I signed up eleven years ago they were considered the best.
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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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07-14-2011, 07:57 PM | #5 | ||
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Thanks everyone! That's good to know. thankfully we have good insurance now and let's hope it stays that way.
Thanks for the video too Paula! |
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