Bill,
That nosy ms patterson quote was from janet....she wrote that....wanting to
know more about me...you read it wrong. If you dont believe me ask janet
herself. I did not say anyone on here was nosy.
Secondly, I am just going by the information my support group gave me saturday
and it just so happened that Arif Dalvi, which is my doctor, is third in the
country with PD and pallid...dont know spelling. He is with Aring Nuerology at
the University of Cincinnati Medical Center on Piedmont Ave. I really like him.
He told me he wouldnt put me on Sinemet because of my age. I am 31 and he said
Sinemet has some really bad side effects the longer you use it. So that is why I
am on Amantadine, and Mirapex. I am always looking for information about PD,
never giving up. Hopefully one day there will be a cure, but for now we all have
to find ways to deal with our daily lives. Hope to talk to you again.
Tina
"William A. Parrette" wrote:
> Hi all,
>
> Ahhhh! Another OneNet'ter! Welcome to the list, Tina. On
> Sat, 30 Oct 1999 Tina <[log in to unmask]> wrote:
>
> > Subject: Re: Government !!!! / nosy ms paterson
>
> Tina, before you start deciding whether other people are
> "nosy" or not, it might be best to lurk around a bit and get a
> feeling for the people and their personalities. I *do* under-
> stand how important it is to get information about a disease that
> you have been diagnosed with as quickly as possible; But, if you
> had lurked just a bit, you would have found out that Ms. Pater-
> son is one of the more prominent and knowledgeable people on-
> list. You would have also found out that her "interrogation" was
> typical for people who "jump" into the list and start making what
> appear to be "wild" claims without any supporting research. It
> happens here on a semi-regular basis.
>
> I have been a PWP for the last four years. I have been on
> this list (I believe) the last three years. In that short time,
> I have found Ms. Paterson -- and *many* others here -- to be a
> valuable "fountain" of useful and interesting information. I
> don't post much here -- mainly due to the volume of the list
> traffic here, the time constraints of another list I administer,
> the travel I do with my job, and a variety of other Net and fami-
> ly activities. But, I do find the digest to have some valuable
> "jewels" in it both from Ms. Paterson and many of the other con-
> tributing members of this list.
>
> > ... Seen 3 regular
> > neurosurgeons from november 98' to may 99' ...
> > ... since the cat scan was normal I didnt
> > have PD ...
> > ... So then I found an excellent Parkinson's / Movement Disorder
> > Specialist in Dr. Aria Dalvi ...
>
> I am on my fourth neurologist in the greater Cincinnati area.
> I hope that your insurance company paid for your CAT scan. One
> company paid for an MRI, another, at a later time, refused to pay
> for a PET scan for me. Is Dr. Aria Dalvi associated with Airing
> Neurology (if so, I hope you have a better experience than I
> did)? The only Dalvi I could find in the Cincinnati phone book
> was an "Arif" in the Hartwell area.
>
> I am currently seeing a Dr. Arthur Hughes with the neurology
> division of Riverhills Health Care and I am currently happy with
> his work. I did find it interesting, though, that during a re-
> cent Theraputic Touch session, the practitioner told me that the
> best Parkinson's specialist that they knew of was up in Columbus,
> OH and didn't mention anybody in Cincinnati. :-/
>
> > ... He put on Amantdine, and then 1 month later, I was better.
> > ...
>
> That's good to hear. The first three neurologists all tried
> Sinemet 25/100 on me with absolutely no effect. I was up to four
> pills a day and noticed no improvement at all. The third neurol-
> ogist tried Amantadine with little or no effect. Dr. Hughes
> tried three Carbidopa/Levodopa (Sinemet) 25/250 per day and fi-
> nally got a reaction. He has since changed that to four Sinemet-
> CR 50/200 per day along with Benztropine and Eldepryl and I seem
> to be doing okay -- not great, just okay.
>
> > ... I am going to a support group this morning especially
> > for young onset of PD ...
>
> I know that there are a couple of groups in the area. I teach
> people about computers with my job and one of my students told me
> about a local group his wife is in and about this list. Again,
> because of my travel, I am not able to find the time to attend
> group meetings (but I do have support in family and friends) but
> I think that they can be a valuable resource and I wish you the
> best in your visit.
>
> > ... Thats all for now. Don't want to be too long winded ...
>
> :-)
>
> Well, you've mentioned another one of the reasons that *I*
> don't post much to this list. As an author and an adult trainer,
> I find myself *very* long winded! In fact, I have to *work* --
> very hard -- at trying to write a short note.
>
> But, again, welcome to the list. If you give it even half a
> chance I think you will find it to be a valuable source of infor-
> mation (even if you have to dig through it a little :-) ) about
> Parkinson's, peoples experiences, current research, and much
> more. I hope you enjoy your list-stay and, as I am often wont to
> say in closing a note, may you grok in fullness ...
>
> Bill--
> ...who has heard that a room without books is like a body without a soul.
> .___. William A. ....._..._ .......7177 Heritage Drive+- //\ -(42?)- /\\ +
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