Hi Craig & Dawn,
My name is Paula and I've had DBS for over a year now. It takes a while
to bounce back, but, boy, is it worth it. I didn't feel a thing or remember
a thing. I recited the pledge of allegiance & I don't remember anything
except saying good morning to the surgeon - then crying in the recovery room
because I had edema in both feet and both legs to the waist. I had had pain
in my legs and had X-rays and ultrasounds back as far as 1994, but nobody
could find a reason. Then my family doctor asked me if I was willing to
wear leg pumps for 3 hrs. each day. You lay in bed for one hour and they
inflate and deflate one at a time and it lulls me to sleep...do that 3 x a
day........and in about 4 months I started skipping days with the pumps.
Then my family doctor got me in to see a psychologist and she has helped me
with coping /relaxing/asking for help when needed, etc.. I know how you must
feel, Craig, because I had no tremors to speak of, but dyskenesias galore.
I was constantly sliding down in booths at restaurants and losing my right
shoe under the table. (I started 11 years ago with PD on my right side-
called it hemi-parkinson's. I had the stimulators put in during the same
operation on 10/30/2000. They originally said they were going to do the head
on Monday and the stimulators on Wednesday, but they did it all in one day.
They kept my family posted, but they were there waiting at the hospital from
6 a.m. until 9:15 p.m.. I must have looked scary with my head wrapped up
like aa mummy because my youngest daughter (19 at the time)..wouldn't stop
crying. the most important thing I want to tell you is I have absolutely no
dyskenesia, no pain, no painful dystonia/my right food curved inwards when I
was "off". Some people come out of it with absolutely no problems and some
require little or no meds. I need to take my meds the same as I did before
surgery. I'll send this e-mail (tell you lots more if interested).
----- Original Message -----
From: "Dawn Tilton" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, February 04, 2002 1:01 PM
Subject: new member
> Hello, my name is Dawn Tilton. I have signed up for this list, not
because
> of myself but becasue of my husband Craig who has been diagnosed with
> Parkinsons. About 10 years ago I noticed that he did not swing his left
arm
> when he walked. Seeing as though my husband was always involved in
sports,
> he attributed it to a pinched nerve in his shoulder. After watching it go
> on for a while I insisted he see a doctor regarding it. Well, one thing
led
> to another and after years of being tested for different things, my
husband
> has been diagnosed with Young onset Parkinsons Plus. Craig is 45 and as
of
> two years ago, he is now disabled at home. I am a Human Resource Manager
> and work 45 minutes from home, and we live in the country and are not
> eligible for any of the resources available to those who live in the city
> (i.e., the only transportation method he has available to him is either
> paying for a taxi which is costly, his motorized scooter or family members
> who are at home during the day).
>
> My challenge with my husband is trying to find creative ways to keep his
> mind active. His days are mixed (some go by with few spells, and others
are
> one complete spell after another). Craig does not have the sever tremors,
he
> mostly has the disconesia. He has some computer access, but always being
> involved in sports makes it difficult for him to sit still. Just recently
> we have made day-to-day arrangements with different people who gave him a
> ride to allow him to be an assistant basketball coach at our Middle
School.
> He will be doing the same for the softball team this spring.
>
> I would love to get my husband involved in a "positive" support group
> setting that will help him overcome the many mental challenges that he
> faces. The State of Maine only has a small support group which is about 1
> 1/4 hours from our house, and it consists of older patients who are facing
> different challenges that Craig is facing.
>
> Craig has recently found out that he is a possible candidate for the new
> pacemaker procedure, so I would love to hear from different people who may
> know of, or have had, this procedure done. He will be meeting with his
> doctor in March to pursue further treatment.
>
> Craig can be reached at our home at [log in to unmask] I am sure he would
> love communicating with different people who he can relate to. Thank you.
> Dawn.
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
>
----------------------------------------------------------------------
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In the body of the message put: signoff parkinsn
