Will, this is  exactly why our support group is doing the survey.

Sharon

On Tue, 23 Oct 2001 10:36:12 -0400 will johnston <[log in to unmask]>
writes:
> Sharon,
>
> Many [probably most] of us could possibly benefit from having a deep
> brain
> stimulator installed, but we are watching.  We saw the benefits to
> fellow
> parkinsonians from the palidotomies fade as time went by in too many
> cases.
> All of the palidotomy patients in our particular area are either
> gone or
> much worse than before. One thalamotomy seems to be holding up.  We
> saw the
> adrenal transplants fail absolutely. The results from most fetal
> tissue
> implants [none received in our area] have not been encouraging.
>
> We are not responding because we have not had the operation done
> YET. The
> gadgets are expensive, and any surgical intrusion into the brain is
> major
> surgery which should be carefully considered before a decision to
> "go for
> it" is made.
>
> Watchfully,
>
>
> Will Johnnston
> A.P.D.A. DelMarVA Chapter Pres.
> 4049 Oakland School Road
> Salisbury MD 21804 USA 410-543-0110
>
>
>
>
> ----- Original Message -----
> From: "Sharon YR Habing" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Monday, October 22, 2001 8:41 PM
> Subject: DBS survey
>
>
> Well Parkinsonians, it was almost a week ago that I put a DBS survey
> out
> on the LIST.  Am I perhaps to believe that not many survive the
> "ordeal",
> because I received only one  reply!  I had more people who were
> interested in the results, and I am sure they are as disappointed as
> I am
> in the nonparticipation.  Did  I do something wrong?   Did I ask the
> wrong questions? Or are you all so happy with your "new life" that
> you
> don't have time to sit down at the computer?!  I'll try it again,
> if you
> have had DBS surgery the Rockford Young Parkinson's Support Group
> would
> like to know about your  experience, whether it is negative or
> positive.
> As I said before, you may reply either  to the LIST or to me
> personally :
> [log in to unmask]
>
> Sharon Habing, facilitator
> Rockford Young Parkinson
>
> DBS survey
>
> Age
>
> Age at diagnosis
>
> Parkinson's symptoms/medications taken before DBS
>
>
>
> Other medical conditions for which you take medication/medication
> taken
>
>
>
> Previous surgical interventions - Pallidotomy, Thalamotomy, other
>
>
>
> Date of DBS month/year
>
> Parkinson's symptoms/medication taken after DBS at
>    2 months
>
>
>    6 months
>
>
>    1 year
>
>
>    Today
>
>
> If it was yours to do over, would you undergo this procedure.  Why
> or why
> not?  Please explain your feelings about this surgery as it pertains
> to
> you and your particular situation
>
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>
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