Enough is enough. I've been lurking out there for a year - it is time to
introduce myself. I hadn't really planned to be quiet all this time but it
seemed like it was a big project to type up an introduction. I needed a
reason; now I have one. Today is my anniversary. It was one year ago to
this day that I was told those fateful words by my neurologist, after
responding in the affirmative to more than 50% of his questions, "from your
symptoms I believe you have Parkinson's".
Actually it was a relief - I knew a bit about Parkinson's. I had known
something was terribly wrong and I suspected the worst. Everybody who knew
me saw it clearer than I saw it myself. I was constantly being asked "what
is wrong with you" and I always had a rationalized answer. I had lost the
use of my left hand for typing and fine motor movements as a result of a
wrist injury - or so I thought. My gait was unsteady and my posture was
rigid because of a lower back injury - or so I told myself.
Coincidentally, on the day on my diagnosis my service provider was at the
house setting my computer up for the Internet. I asked him if he knew how
to find information about Parkinson's on the Net. He suggested posting a
question on the newsgroup Sci.med. Amongst the replies was one from Anne
Rutherford in Newfoundland. She told me about the Parkinsn list and I
haven't looked back. Although I haven't posted to the list before, I have
been in direct contact with many members - I've even made the modern day
equivalent of a pen pal. I am thankful to members of the List for their
information, support, suggestions and comments. I am especially thankful to
Barbara Patterson for making it possible, to John Cottingham for the
technical tips and research summaries and to David Boots for his candid
observations and humour. I wish I had more time - I'm a month behind in
reading the Digests that arrive each day. Of all the publications I read,
the Algorithm for the Management of PD provided the best technical
explanation while The Young Parkinson's Handbook provided the best lay
explanation. The Case of the Frozen Addicts was the most interesting.
I am married with two children (ages 13 and 9) and still work full time as
a social worker. At times it is difficult to juggle the competing demands
of family, work and home. I've joined a great Young Onset support group
locally (I contacted them the day of my diagnosis). I often share ideas or
articles from this List at our monthly meetings. As those with Parkinson's
know, no two days are the same; mornings are the hardest. Sometimes it is
depressing to realize the things I can't do and that, unless there is a
medical miracle, the situation won't get better. I don't like being
dependent on medications and I don't like not being in control. On the
positive side, the diagnosis has made me appreciate life more, to
rediscover my sense of humour, to do things now rather than "sometime" in
the future, to speak my true feelings and to get involved in a regular
routine of exercise and better nutrition.
Using the 900 Club survey format as a guideline, here is my profile:
Name: Robin G. Ruffell
e-Mail: [log in to unmask]
Postal code: V8N 3W3
Age: 47
Weight: 150
Sex: Male
Years Parkinson's: 1 (diagnosed)
Years Medication: 1
Medical Indications:
1. parkinsonism - tremor, bradykinesia & postural instability
Medications:
NAME DOSAGE(mg X daily frequency)
1. Sinemet CR 200/50 X 3.5
2. Sinemet 100/25 X .5
3. Numerous Vitamins (A,C,E) and Antioxidants (Defense)
Comments:
1.Selegiline had no beneficial effect
2.Loss of use of left arm, dragging left leg are my biggest problems
History:
1. Childhood polio (sub clinical)
2. Many amalgam fillings (has this been explored?)
3. Above average exposure to paints, solvents
4. Average exposure to pesticides and herbicides
5. Drank well water for 5 years (mid-70s)
6. Two relatives (maternal uncle, paternal grandmother) had adult onset
Parkinson's
7. First recognizable symptom - loss of sense of taste and smell (approx. 5
years pre-diagnosis)
8. Later symptoms: facial masking, small handwriting, depression, and MANY
others including those which are personal and/or embarrassing
9. Sinemet has helped considerably and all areas except left side dystonia
and bradykinesia
I regret that this has been so lengthy. Thank you so much, everyone, for
being there.
+++++++++++++++++++++++++++++++++++
+ Robin Ruffell, Victoria, B.C. +
+ email: [log in to unmask] +
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