 |
 |
Evening all. What a strange world? I have been sitting here all day, absorbing the list news/chat and hanging on your words of wisdom ... discussion. It is so comforting. Thank you SO much for those who responded to the start of my 1000 questions. Your support is so ... comforting (i'll wear the word out if i'm not careful!) love to you all sue -----Original Message----- From: Barb_MSN <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Tuesday, 11 April 2000 5:42 Subject: Re: PD Med's Question >OYE!!!!! <--- Barb smacks self on forehead! I GOOFED! I had >meant to say I"m NOT the most PD-knowledgeable amongst the List >members, but have SOME knowledge 'bout the disease after all these >years living with it/ > >That' "NOT" not being there sure made me sound arrogant! WHEW!!! >T'ain't that when it comes to this steeeenkin disease. > >Barb Mallut >[log in to unmask] > > >-----Original Message----- >From: Barb_MSN <[log in to unmask]> >To: [log in to unmask] <[log in to unmask]> >Date: Tuesday, April 11, 2000 12:29 AM >Subject: Re: PD Med's Question > > >>Hi Sue.... >> >>First of all, there's never been a "posting limit" on this List >>that I know of, and I've been logging on daily for 'bout 6 years >>or so. >> >>If there IS a limit to the number of messages one can post at a >>time then SOME of us are in BIIIIIIIG trouble! <grin> >> >>So relax, m'dear, and post away - get it all out and know you can >>count on the folks here on the List to be supportive as well as >>knowledgeable about our mutual adversary, Parkinson's Disease. >> >>Regarding your questions, please keep in mind that I'm not an MD, >>but rather have had PD for 25 of my 57 years. I"m the the most >>"up" on the disease whom you'll hear from over the next few days, >>but I have a more than a little general information. >> >>Your question #1: >> >>Your mom should be seen and diagnosed by at least once by a >>neurologist who is a "movement disorder specialist. This time >>might be the best time for for your mother to see this type of >>specialist since you both have unanswered questions with her >>current neuro. >> >>There's one easy way to find out if someone has PD >>and that's to give them Sinemet (the "gold standard" >>of PD drugs). If it dosn't work then mom almost >>certainly doesn't have PD. >> >>As far as PD not being diagnosable at "this stage," >>there ARE noticable symptoms and a half-way decent >>neuro SHOULD be able to diagose your mother >>based upon those symptoms. >> >>Question #2: >> >>Parkinson's CAN be inherited, tho it's not terribly >>common to find familiel PD families on every street >>corner. There are lots of folks here in the List and at >>many of our local PD support groups who know someone >>ARE someone who's the third or forth direct decendant of >>someone or other in their family to have PD, or one >>of the other PD-like diseaes, referred to as >>"Parkinson's Plus." >> >>Question #3: >> >>Mom's neurologist is just plain wrong! See >>above response.... >> >>Hang in there, Sue. And the next time you go to or >>speak with mom's neuro or another MD who might >>see her, go armed with a list of all your, AND a >>portable tape recorder (if possible) so you can tape >>the MD's response. It's SOOOO easy to forget >>to write down the doctor's response to those questions. >>his way you won't have to worry about rushing to write >>it all down. >> >>Hang in there, Sue, and hugs to mom 'n you... >> >>Barb Mallut >>[log in to unmask] >> >>-----Original Message----- >>From: Sue George <[log in to unmask]> >>To: [log in to unmask] <[log in to unmask]> >>Date: Monday, April 10, 2000 8:44 PM >>Subject: Re: PD Med's Question >> >> >>>Morning all. I feel nervous of ... posting a query ... (very >>ignorant about >>>it all) ... but ... would like to ask: >>> >>>My mother has uncontrollable tremors that are getting worse. My >>grandfather >>>had similar tremors but was never diagnosed as having PD, in >>fact, for all >>>we know, it was never diagnosed as anything. He died at 87 ... >>with bad >>>enough tremors that he couldn't write and had difficulty walking >>... but >>>other than that ... quite ... healthy (if that's the word?). >>Anyway ... mum >>>has now got these tremors and they are getting worse and she's >>been to the >>>doctor and then the neurologist ... who said ... "it isn't >>hereditary" and >>>"there isn't any real way to diagnose it at this stage" but "you >>could have >>>it and a i can't say that you haven't got it and we'll just have >>to wait and >>>see what happens". I'm paraphrasing here and from mum's >relating >>of the >>>conversation but .. that's about it. >>> >>>Mum feels anxious and upset about it and believes, i think, that >>she >>>definitely had PD ... that it is just a matter of time before it >>is >>>diagnosed. This is just her "feeling" but it is still a very >>difficult time >>>for her. >>> >>>Anyway ... i got onto the net ... found your list ... and i was >>wondering if >>>someone could help me understand a few things: >>> >>>(i) i found some sites on the net where they were advertising or >>talking >>>about diagnosis services (imaging, dna) .... are these useful >... >>why not >>>recommended by the doctor? >>> >>>(ii) i also read on the net that PD was not normally thought to >>be >>>hereditary ... which made me wonder ... "then how can they use >>dna >>>diagnosis? what is that about?" >>> >>>(iii) also, if PD isn't hereditary ... then perhaps the >>neuromuscular >>>disorder that mum and grandpa have/had is not PD but something >>else? what >>>are the other neuromuscular disorders which cause this sought of >>symptom? >>> >>>This seems like too many questions. Sorry. I feel like i >>suddenly have a >>>thousand questions? >>> >>>I hope it is OK to post so many at one time. >>> >>>thanks >>>sue >>>-----Original Message----- >>>From: Nancy Burnham <[log in to unmask]> >>>To: [log in to unmask] ><[log in to unmask]> >>>Date: Tuesday, 11 April 2000 10:33 >>>Subject: Re: PD Med's Question >>> >>> >>>>In the very beginning Don's doctor prescribed Artane. We read >>the side >>>>effects and decided to keep the tremors. >>>> >>>>Nancy B cg for Don 66/17 >>>> >>>> >>>>----- Original Message ----- >>>>From: Brian Collins <[log in to unmask]> >>>>To: <[log in to unmask]> >>>>Sent: Monday, April 10, 2000 5:32 PM >>>>Subject: Re: PD Med's Question >>>> >>>> >>>>> On Sun 09 Apr, plmaddux wrote: >>>>> > Hi Folks, >>>>> > After having a tremor for 4 1/2 years I decided to try >>taking a med >>>>> > prescribed by my doctor. He thought that Artane was the >most >>approiate >>>>drug >>>>> > for my symptoms, that being a left side tremor. I had been >>taking >>>>Benadryl >>>>> > which was giving me some relief but it was not helping much >>and I was >>>>> > beginning to have a headache all the time. >>>>> >>>>> >>>>> >>>>> Hello Lanier, Re your 1st paragraph : You show me a doc. >>who thinks he >>>>> can select an appropriate treatment based on the patients >>symptoms, and >>>>> I'll show you a fool ! >>>>> >>>>> Artane is an Anticholinergic drug. It blocks the production >of >>>>acetylcholine >>>>> (another neurotransmitter) The reasoning (!!) is that if >there >>is less >>>>> acetylcholine , it may make more room fpr Dopamine. I was >>prescribed >>>>Artane >>>>> immediately upon diagnosis, and I think went up to 10 mg in >>the first >>>year >>>>> (Well it was 21 years ago). Of course at that time, I thought >>that they >>>>> knew what they were doing. I suppose there was a slight >>reduction in >>>>tremor >>>>> but it was never in control . I made a fuss and was switched >>to Sinemet, >>>>> which I urge you to do also. >>>>> Regards, >>>>> -- >>>>> Brian Collins <[log in to unmask]> (60/39/34) >>>>> >>>> >