 |
 |
Lori.... I strongly agree with Janet's advice, but would suggest Gerald be seen by a MOVEMENT DISORDER SPECIALIST (a type of neurologist rather than just another generalist neurologist. If you live in an area where there isn't a large selection of specialists to chose from, you might contact a university with a teaching hospital, if one's nearby. Good luck.... Barb Mallut barb_,[log in to unmask] -----Original Message----- From: janet paterson <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Wednesday, August 25, 1999 4:49 AM Subject: Re: adv stages vs end stages? / too much too soon too fast >hi all > >At 05:32 1999/08/25 EDT, lorrie wrote: >>Hi all, >>Since December I've been helping my mother take care of my >>stepfather with PD. He has REALLY gone down hill in the >>last year, let alone the last month. >>5 years ago he was working and more or less asymptomatic. >>10 months ago he got a cane, >>8 months ago he got a walker, >>4 months ago he got a wheelchair, >>and now he can't perform any of the 5 activities of Daily Living. >>When he's doing well he can feed himself...for a little while. >>What is this stage called? end stage? Where are we in the >>stages of Parkinsons? >>We know it is going very fast, but realize we don't know very >>much about how this terrible disease ends. Should I call his >>daughter in Europe who plans to come see him in December? >>We've been successfully fending off pneumonias from swallowing >>problems, still combatting urinary infections, and dementia. >>Transfers have become very difficult for him. He can barely >>stand while we reposition ourselves to complete the transfer. >>Sometimes he goes into a strange mode during the exertion of >>a transfer: he gets glassy eyed and stares into nowhere... >>can't hear us or remember during that time. We usually seat >>him quickly and wait for it to pass...it takes about 1 to 5 >>minutes. Is anyone familiar with this? It's been going on >>for about a month. >>Tonight was kind of scary. He was doing well and we went out >>to eat. We took a bus with a lift so no transfers were necessary. >>He ate pretty well but 4 or 5 times during dinner he would grab >>the table with all his might and grit his teeth. I thought it >>resembled someone grabbing something to steady themself when >>dizzy, but maybe it was pain, maybe it was a different kind >>of tremor. We asked him but wasn't able to get much response >>as to what was going on. Even afterwards. The scariest part >>to me was once when I asked what he was feeling, what was he >>experiencing....he said "Light" or "Life"....we're still not sure. >>anyone familiar with this kind of reaction? Is it a tremor? >>Is there anything we can do to help him during it? >>Anyways, Thanks for listening...and please be frank on where >>we are with this and what to expect. >>Lorrie step-daughter/PT caregiver to Gerald 78 yrs/71 at diagnosis > > >lorrie > >i will be very frank: > >what is wrong with this picture? > >1. the speed of deterioration >2. no details of gerald's med intake >3. no details of gerald's medicos and their qualifications > >what is right with this picture? > >1. Lorrie, step-daughter, found us and wrote to us > >lorrie, >i am not belittling your situation >i am stunned by it > >i can only say that i suspect very strongly >that what gerald is suffering from is not from the pd >but from the meds he has been prescribed >which begs the question - by whom? > >i would advise very strongly >that gerald's symptoms and med intake over the past two years [minimum] >be analyzed by another doctor or two or three >however many it takes to find >one who specializes in pd >and has lots and lots of pd patients [i.e. happy customers] > >what you have described >reeks to me of drug-induced psychosis >[lots of details in the list archives - >if you want help digging it out, just ask me] > >there is a ton of ignorance out there about pd >in all fields of endeavour and in all walks of life > >it is not only a sad situation >but also a dangerous one which can be fatal >as we have witnessed here in this group > >please please >get gerald to another doctor > >and please read joe's story >it's on my website in the pienet section >i consider it requuired reading for anyone associated with pd > > >janet > >janet paterson >52 now / 41 dx / 37 onset >po box 171, almonte, ontario, canada, K0A 1A0 >a new voice: http://www.geocities.com/SoHo/Village/6263/ >[log in to unmask]