39 y.o. fella with Parkinson's, diagnosed at age 34 after about 8 yrs of weird, inexplicable symptoms. Probably my PD is related to growing up literally next door to a pesticide factory, plus working various jobs with heavy exposure to chemicals and vaporized metals (printing, welding, glass-blowing...). Also between '91 and 2004 recorded and/or produced recordings for 300+ bands you've never heard of :) Pretty much 'retired' now from my former career, only doing final mixes for artists I truly love, and that know that it takes me a loooooong time now to do work that is up to my standards... it's fun that one of the last things I mixed got named as one of the 50 best tunes to come out of Northern Ireland-- of course neither the band or I will make a dime off of it anyway :) Battling SSDI and insurance companies has been my full time job for 3+ years now... Finally getting treated for Central Sleep Apnea, which isn't too unusual with PD I've been told. The frustrating bit is that I was originally dxd with the CSA in 2005, but due to a Fellini/Rube Goldberg/Salvador Dalí-esque series of medical record messes, neither my treating Neurologist or Primary Care MD were given that info until about a month ago! AAUGH. But better a late discovery than a late me!-- the doctors scrambled to get me the cpap/bipap titration session 2 nights ago, and they've pulled strings and asked favors to get the session and the equipment at a considerable discount-- a HUGE blessing, as I'm one of the 45+ million Americans with no insurance and no further possibility of private insurance. I had no option but to stop working 'for real' 3 years ago, and must admit that that has been excruciating... I'm not happy about it. But at least now I'm growing more accepting of it. Applied for SSDI almost 3yrs ago; a hearing has been pending now for 23+ months(as of Nov. 08) . I miss working, and really wonder if proper treatment of the CSA from initial discovery would've allowed me to keep working. The testing showed that I 'awoke' several HUNDRED times during the night and was having an average of over 70 apnea/hypopnea episodes per hour. Hah, I guess that explains constant fatigue and mental fog approaching dementia... This recent cpap titration night in the sleep lab was a trip-- I know that I was asleep less than 3hrs, but woke less sore and stiff than I have in longer than I can recall. Plus, my 1st morning med dose (generic sinemet 25/100 and 5mg selegiline) absolutely gave me a stronger 'on' than it has in years. So a good initial experience with cpap/bipap! The machine donated to me is about 10 years old, but it's great. It came with a passive humidifier unit, which I'd say is totally essential. Though I wouldn't yet wager on it, I'd love it if my improvement would allow me to go back to work, and help to improve my absurd insomnia as well; my brain still thinks that a day is 30-40 hrs long, so we're still exploring ways to make me actually fall asleep. But, when I do fall asleep, it's usually been for 6-9 hours and I wake up feeling pretty freakin' good. I'm interested in bios of other PWP here, especially YOPD and others with PD and insomnia/apnea/other sleep issues.
39 y.o. fella with Parkinson's, diagnosed at age 34 after about 8 yrs of weird, inexplicable symptoms. Probably my PD is related to growing up literally next door to a pesticide factory, plus working various jobs with heavy exposure to chemicals and vaporized metals (printing, welding, glass-blowing...). Also between '91 and 2004 recorded and/or produced recordings for 300+ bands you've never heard of :) Pretty much 'retired' now from my former career, only doing final mixes for artists I truly love,
Irish language (Gaeilge aka Gaelic), history, and music. Music. Music, and music. Recording, mixing, and playing music. Politics. Reading. The politics of reading music :) Building weird things. Trying to, in some tiny way, contribute to the utter defeat and discrediting of the apocalyptophiliac kleptocrats that've run roughshod over American governance for the last 8 years. The Constitution is an awesome blueprint that they've tried to crumple and have stained brown with their cynical, self-serving machinations. EDIT POST-U.S.-ELECTIONS: I am very grateful, hopeful, and humble about our recent elections. Even if we may disagree on the outcome, I'm sure we have more in common than not. I look forward to an inspiring new administration here. God bless America, and God bless everyone in this wonderful, awe-inspiring world. Here endeth the lecture :)
Irish language (Gaeilge aka Gaelic), history, and music. Music. Music, and music. Recording, mixing,
November 21, 2008 9:11pm
Hmmm. I'm trying a new med for insomnia-- cyproheptadine, which is an old antihistamine that's Rx only in the states. My insomnia pre-dates …
Thank you for the words of wisdom. They really do mean a lot to me. It makes me cry reading them because I feel sometimes the same way you did. I have plans set up for me and with counseling, family, and others I am starting to get my life back slowly. I have started setting little goals for myself. One is getting back to work. I need that and want it. Then the others will follow in time. Thanks again for responding it means a lot to me.
Thanks for the invitation to be a friend ! Sending best wishes and hugs to you and family. XOXO pat
39 yo guy, dxd with PD at age 34. Probably/maybe my PD is due to growing up literally next door to a pesticide factory, jobs with constant exposure to vaporized metals and chemicals(glass blowing, printing, welding). The doctors put me into the 'atypical' range of PD, and as y'all know that can mean a huge variety of things... disordered sleep and slow movements/balance issues my biggest hassles. But attitude is everything, and I sure as hell don't always remember that.
39 yo guy dxd with Parkinson's at age 34. Had 1st sleep study '04, due to weird situation, my neuro didn't see results til 6mo ago. Severe Central sleep apnea, so finally had cpap titration this week (Oct 8 '08). WOW what a difference! Excited to get cpap/bipap asap, no insurance so wish me luck :)
I'm 39 and have 'Atypical Parkinson's' , sleep apnea and chronic insomnia that predates the parkinson's diagnosis by many years. I've tried a zillion Rx, OTC, relaxation/breathing and other methods... so far very little success.
