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Hello Mary Ann:

I live in close proximity to you in West Bloomfield.
I am in White Lake and am curious which support group you belong to?  Also
what Dr. is Jamie using.?
I have an appointment for evaluation for DBS by Dr. Junn
on October 16 at Beaumont hospital.  Do you have any knowledge of him?  I
have had PD for about five years
and experiencing freezing episodes along with tremors
in fatigue.  Enjoy reading your e-mails.  I know Jamie
has a great caregiver.  Best wishes,


Ervin McCarthy
----- Original Message -----
From: "Mary Ann Ryan" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, October 01, 2003 9:16 AM
Subject: Re: Caregiver


> >
> > 1.      Lack of knowledge of the disease by   health care professionals,
> which care for the person with Parkinson's disease in Care facilities.
> >
> >
> >
> > 2.      Unintentional abuse both by the health professionals and
families
> providing care due to lack of education.
>
>
> I have posted on this problem before, Sandy.   My husband has had PD for
the
> past 24 years and has been hospitalized twice within the last year.  I
> stayed by his bedside constantly - even in ICU and CCU (I'm an RN at the
> hospital where he was a patient so the staff was very indulgent).
>
> I have been a med-surg nurse for the past 37 years and can tell you that I
> have rarely cared for PD patients with complex drug regimens.  Even though
> Parkinson's Disease is the most common  neurological disease in the USA,
few
> PD patients are on the kind of medication schedules that my husband has.
> That is why I stayed by his bedside during his hospitalization, and that
is
> why the staff encouraged me to stay.
>
> In our Michigan, West Bloomfield PD support group, the topic of
> hospitalization and the lack of understanding on the part of the medical
> staff about PD is a regular topic.  The reality is, we must advocate for
> ourselves.  We must teach the hospital staff about the problems that may
> occur with improper medication administration.  We must be firm when
dealing
> with resident physicians who try to change drug regimens because they
think
> no harm will occur, or don't understand how medication side effects can
> positively destroy the health of a PD patient.
>
> Finally, we must never take for granted that medical professionals will
> understand the  unique physical and nutritional requirements of the  PD
> patient.  I can't tell you how many times I have had to call pharmacists
in
> our hospital to inform them that Eldepryl cannot be given at 5 p.m. (or,
> even worse, 10 p.m), and that Sinemet should be given *before* meals on
the
> medication schedule.
>
> It's an up-hill battle when a PD victim must be hospitalized.  It is very
> important for caregivers to have enough self-assurance to challenge the
> system when they know that an incorrect medical regimen has been
prescribed.
> --------
> God bless
> Mary Ann Ryan (CG Jamie 64/24)
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
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> In the body of the message put: signoff parkinsn

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