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hi all At 07:34 1999/10/30 -0400, tina wrote: >Hi Janet, >I first starting having problems in november 1998, mainly >depression, headaches on left side of head and neck, and >tremor in right hand. Seen 3 regular neurosurgeons from >november 98' to may 99'. I received a medicine for benign >tremor, because one neurosurgeon said since the cat scan >was normal I didnt have PD. Well the medicine wasn't >working, so they increased the doseage, still no good.... gee, i thought a cat scan would not show parkinson's maybe i'm thinking of a different type of 'photo-op' i think a lot of us start out with depression the estimates are that between 40 and 60 percent of parkies have it i'm not sure if it is known why certainly the brain chemistry dysfunction seems related, as these things go and your tale of mis-diagnosis is also common, especially for us young onset types i guess due to a general lack of knowledge out in the 'real world' about pd and the detail of its incidence i was not misdiagnosed for a long time but i kept my head buried in the sand for over three years in fear of what it might be... >So then I found an excellent Parkinson's / Movement Disorder >Specialist in Dr. Aria Dalvi. He told me I had the classic >signs of parkinson's. My whole right side of my body is slower >than my left side, I have a lot of rigidity in my right side, >he could see it in my walk, tremor, and depression. He put on >Amantdine, and then 1 month later, I was better.... wonderful! i could probably diagnose parkinson's myself at this point! my difficulty walking, my tiny chicken scratch handwriting my general stiffness and slowness, all were classic signs as well on my first fearful visit to him my own internist made a note to himself about parkinson's as a possible diagnosis for me, but said nothing 'because i was too young' three weeks later, diagnosed by a neurologist in montreal and 'sinemetized', i marched back into his office and said 'guess what?' and he said 'i knew it!' and showed me his note 11 years later, my hope is that increased pd awareness is starting to ease the diagnosis confusion >I am 31 yrs old, live in Cincinnati Ohio. Dr. Dalvi is >with the University of Cincinnati Medical Center. I had >to go back to him recently, due to tremor back, right leg >freezing at times, or it will drag on me. I fell a couple >of times. My balance has gotten worse. So now along with >amantadine, I am on Mirapex also... if you have to have pd you couldn't have 'picked a better time' to get it the amount and variety of research and discoveries going on now is a phenomenon - when i was diagnosed, the only new med on the scene for years was selegiline my understanding and impression is that the advances in techno-bio-chemical-neuro-cellular-research are growing on a logarithmic scale building on previous advances sometimes i feel that pd knowledge and discoveries are gaining momentum daily research into pd and other brain disorders has potential crossover ramifications for alzheimers, schizophrenia, multiple sclerosis, and 'who knows?' >I am going to a support group this morning especially >for young onset of PD. I will let you know how that goes... good! i think that a support group is critical my first years with pd were in a location with no support groups at all so i was on my own until i found this on-line group in 1995 the sharing is invaluable, on all levels whether it's medical, emotional, silliness, or techno-babble we the people with pd the ones who have heard the words and who still have them echoing in our heads are a select bunch we have been snatched out of the crowd, grabbed by the shoulders, and given a hard hard lesson to learn, with no going back my adopted cyber-dad [don mckinley] has said that he talks to us when he knows no-one else would understand, regardless of their expertise or their empathy or even their love >I am also seeing a therapist. She is helping me to learn how >to deal with this, since I do live alone, and also because my >parents are going through a divorce after 32yrs. And then my >mom is having trouble accepting that I have PD. She keeps >telling me I don't have. But that is another long story.... oh my gosh... that's a lot all at once... i have gone through my own marriage breakdown and my business failure while coping [or not coping] with clinical depression [cd] and parkinson's disease [pd] and that was not exactly a stroll around the park! my sessions with a psychiatrist during that period were the most painful and the most enlightening and ultimately the most free-ing thing i could have done for myself my mother died in 1964 and my father died in 1977, so having 'parents' as an adult is a slightly foreign concept to me i can only guess at the hurts involved at seeing their marriage break up after all this time do you have any siblings? i live alone as well, except for being slave to four ferociously demanding felines >I seen this listserv as I was browsing the web. I was >looking for support groups that meet at certain times >on the internet but can't seem to find any.... i haven't heard of such a thing [i.e. scheduled] except there are various pd chat groups out there [which i haven't participated in] i'm sure that others here can tell you about them >Thats all for now. Don't want to be too long winded... tina, being 'long winded' if we need to be or if we want to be is our prerogative here the whole point of the exercise as it were if some listmembers find themselves yawning while reading any message all they need do is hit the delete key while in the meantime your generous and open sharing can still touch others [and potentially trigger who knows what type of discussion] and also still ends up in the list archives for future 'touching' my stock advice for pd newbies is to go digging in my website [address below] especially for 'joe's story' and for 'jim finn's story' which reflect both sides of this adventure we are on - here's a quick 'flashback' about same: ------------------------------------- Date: Thu, 21 Oct 1999 10:42:59 -0400 From: janet paterson <[log in to unmask]> Subj: for newbies: two stories of heroes / ooops / links corrected hi all and hi to john of the st john's wort sometimes my attempts to be brief and succinct and to the point are perceived by others as aggressive and antagonistic we all are where we have been during my four years of pien list membership i have learned a ton i have laughed i have cried i have rejoiced i have despaired i am me plus all of my experiences and memories two tales from our group have touched me deeply and [i feel] are essential reading for anyone new [ish] to this pd game joe's story is at: <http://www.geocities.com/SoHo/Village/6263/pienet/joestory/index.html> and jim's story is at: <http://www.geocities.com/SoHo/Village/6263/pienet/hithgang/hitjimf.html> janet ------------------------------------- also, i recommend this for anyone newly diagnosed with pd: Psychosocial Factors In The Treatment Of Parkinson's Disease <http://www.geocities.com/SoHo/Village/6263/pienet/words/nppsych1.html> elsewhere on the wwweb try this: The Young Parkinson's Handbook <http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/main/YOPD_Handbook/YOPD_ TOC.html> and this for more 'meaty' information: Algorithm for Managing Parkinson's Disease <http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/Main/Drugs/ManPark1.html> i am glad you are with us you are now my cd sister-in-slime as well as my pd cyber-sis!! janet janet paterson 52 now / 41 dx / 37 onset 613 256 8340 po box 171 almonte ontario canada K0A 1A0 a new voice: <http://www.geocities.com/SoHo/Village/6263/> <[log in to unmask]>