Gail,
I began with the exact symptoms your sister had, except it was my left
foot that dragged. Numb finger, "frozen shoulder," doctors who were
reluctant to name PD as the cause...all so familiar. Same age, too. And
I do the same thing with grocery bags! :-)
I have been fortunate in that my progression has been slow (knock on
wood) and my symptoms are responsive to medication.
I hope the same is true for your sister.
Also, I have had good experiences with a healing practice called
cranio-fascial therapy. I find it very helpful.
If you (or your sister) would like to 'talk,' you are welcome to
contact me off list.
Kathleen
-----Original Message-----
From: Gail <[log in to unmask]>
To: [log in to unmask]
Sent: Sat, 2 Jul 2005 16:48:21 -0400
Subject: Re: early symptoms:
Judy you are sure right, telling our stories is so important.
My sister went through something like you experienced. At 48
she had a "numb" little finger... thought it must be caused
by her bad habit of looping plastic grocery bags from the
store over her fingers to carry them from car to house.
Then she had a "stiff shoulder". Thought she may have slept
on it wrong. Her doctor diagnosed it as "frozen shoulder" and
she received Physical Therapy for it for almost a year.
Meanwhile she began kinda "dragging" her right shoe when she
walked. Well not dragging it but you could hear her right
step but her left step was silent.
I'm a nurse. I was walking across a parking lot with her and
I "heard" her gait. We had been talking but the sound got my
attention. I watched her walk and recognized the neurological
origin. I suddenly connected her writing on the Birthday card
she had recently sent me where I had noticed a tremble in the
script.
Initionally all of these "symptoms" over a year period of time
did not appear to have any connection with each other but that
evening everything fell into place. She had Parkinson's Disease.
Now the next challenge was to get her doctor to recognize it.
I thought it was a slam dunk... but no so.
I talked with my sister and told her that she needed to see a
Movement Disorder specialist. That I thought she had PD.
She said Kaiser had it's way of doing things and she made an
appointment with her Family Doctor first. I went in with her
to the appointment and we talked with him. We pointed out her
symptoms and asked him to observe her gait. His assessment was
that since she could draw a circle and her writing was NOT tiny,
that she did NOT have Parkinson's, instead he diagnosed her with
Carpal Tunnel Syndrome and fitted her with a hand brace.
"No", he said. "No PD". "No Neurology Consult".
I knew an excellent Movement Disorder Specialist and called for
an appointment for my sister. I knew if my sister had PD, this
doctor would know it and advise her as to what to do next. This
was a cash visit and Kaiser refused to reimbure but within
minutes the PD diagnosis was confirmed. She recommended tests
to be run to rule out other possible causes for her symptoms but
basically we had the diagnosis. She wrote a letter to the Kaiser
doctor with the diagnosis and tests that needed to be run. And
they were run.
It should not be like this... we need more exposure, awareness
and education!
Gail Vass
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