Shamus
In 1996 I was still working at a menial part-time job when I quit in the
Fall. I have spent a great deal of my life working "sick" (cancer in
1979-81, just one example) so I packed it in as I had retired from teaching
in 1991.   First few years with PD were tolerable.  Went to Egypt with my
niece with a cane in 1999.  In 2000 I got my dog and could walk  him.

Somewhere between 2000-2003 I got worse.  In the summer of 2003 I had 2 DBS
brain surgeries.  I did this because my tremors went bilateral.  My voice
started getting bad, but am not certain whether it is PD or the DBSs. Since
then I have had periodic botox injections in my left leg to combat dystonia
and uncurl my toes.  My fine  motor skills really started to go about 6
years ago.  Over a year ago I fell several times, but although my balance is
not good, I haven't fallen for a long time.

At home I use a Jazzy 1113 electric wheelchair to get around.  When going
out I take a walker with a seat so I can sit if I need to.  I exercise daily
on the treadmill, have 2 putting greens in my back yard which I visit twice
a day and last as long as I can, maybe 5-10 minutes in winter.  In summer I
walk in my pool and treadmill.  My hands are like paws, I strangle when I
try to speak, walking is very difficult, but other than that things seem to
have stabilized since 2003 and the DBSs.   I had gotten worse in 2001 when
my Mom had a stroke and I tried to help her.  She died between my brain
surgeries.  Although I miss her terribly, the stress is gone.

I took Sinemet for a year before and tried Stalevo after the DBSs.   If meds
helped I would take them, but I can't see why I should take them if they
don't.  Requip and Mirapex never helped.   When I was better I exercized
more.  I do take Inderal (a very old PD tremor treatment)for blood pressure
and Benedryl (another very old PD remedy)at night because I constantly cough
up mucous and choke (would be drooling no doubt if I didn't do this).

One of the very hard things about PD is that we are all so different.
Because of my cancer and other medical experiences, I decide what is best
for me after getting as much info as possible.  The computer has saved my
life. Good luck.
Ray
----- Original Message -----
From: "Shamus McLaughlin" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, December 23, 2006 7:38 AM
Subject: Re: DBSAriela/ posting vs. private message


Ray,

What has your disease been doing since 1996 without the medication?  I have
just recently been diagnosed (I think I have had it for years) and have just
started taking Mirapex. It makes me very foggy and confused.  I am
struggling with whether I should continue...it helps with the shaking but
side effects may be almost as worse.

What is  your condition now and what steps do you use to try and combat it?

Shamus

-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of rayilynlee
Sent: Friday, December 22, 2006 8:35 AM
To: [log in to unmask]
Subject: Re: DBSAriela/ posting vs. private message


Stephen, I was diagnosed in 1996. Think I answered you before, let me know
if you didn't get my email. Ray
----- Original Message -----
From: "Stephen Fisher" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, December 21, 2006 5:59 AM
Subject: Re: DBSAriela/ posting vs. private message


> Dear Rayilyn,
>                           I'm more than curious about you not taking
> any PD meds. How long since you were diagnosed?
>                     Stephen CG Deirdre58/10
>
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