hi all
At 07:26 1999/03/23 -0500, donna wrote, in part:
>My specific interest in PD has been brought about by the recent
>diagnosis of my father-in-law (77 yrs old) with PD...
>
>He became diagnosed with diabetes approximately 20 months ago...
>was brought under control rather easily with once a day insulin
>injections. However, he had continued to deteriorate in regard
>his physical ability to get up and get around...
>
>What is the specific experience of PD patients who also have
>diabetes?...
>
>The doctor prescribed Sinemet; 1 25/100 CR for today, asap -
>1 tomorrow morning and another tomorrow afternoon, and then a
>total of 3 for the third day, taking 1 after each meal, which
>is to be his dosage per day for the next month, to see if it
>will help. He second visit is scheduled for 4 weeks from now...
>
>There was no counsel on eating, i.e., how much or what kind of food
>is beneficial or detrimental to taking the Sinemet. Also, no real
>response to questions regarding the diabetes...
>
>Pat is 77 years old, and prior to the diabetes onset 18 months ago,
>was in good health -- very active. He is almost chairbound now --
>it's so difficult to walk any distance at all. His legs just don't
>want to work right -- to obey his will...
donna, i have good news and good news for pat
which do you want first?
1. sinemet will ease his pd symptoms almost completely
as the first stage - the 'honeymoon' stage - of pat's pd career begins
2. there are lots of good neuros out there - find one who
understands how critical titration is to parkies - preferably a
medico who shows a modicum of interest in his patients
3. the pd list archives are a goldmine of information -
we have likely been there and done that - if not - there are now
1800 brains right here, ripe for the picking / digging
in re my own diagnosis experience
here's something i wrote last summer:
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onset
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for some strange reason
i can't comprehend having pd as depressing
a challenge most definitely
but also 'just another problem' tossed at me that i have to cope with
in 'the road less traveled'
scott peck describes life as being difficult
once i got over the shock of that simple statement
i understood what he meant by changing the way i look at things
if i 'expect' life to be easy
i will always be disappointed and whining about 'fairness'
if i 'expect' life to be difficult
and maybe something i'm supposed to learn from
i will always be challenged and sometimes pleasantly surprised
i had symptoms for a long time before getting up the nerve to go to a doctor
first was the small finger in my left hand while i was typing
cramps and tension
then my left arm
then my left foot
then i was uncomfortable and stiff while walking any distance
i got more and more frightened and
slowed down more and more
i even tried some exercise tapes thinking i was just 'out of shape'
and scared myself silly cause i couldn't do them
when i got the diagnosis of parkinson's disease
i went into a blind panic but that was based on ignorance
it was decided that i needed to go on sinemet right away
so i started eldepryl and sinemet in october 1988
and have been on them since
my trip to canada to see the neuro
involved my having to get a wheelchair
because i couldn't walk the length of the toronto airport
my trip back to bermuda three weeks later, sinemetized,
involved my marching through the airport
with all the bravada and syncopation of a one woman band
eldepryl 10 mg per day has not changed
the sinemet has been increased in quantity and frequency over the years
but any changes have been very slow
so my total med menu is eldepryl, sinemet and prozac
i haven't wanted to start on an agonist until one of
the newer ones has been through a bit of a shake down period
if i'm 'kicked out'
i have a hard time walking, writing, 'doing' much of anything
my symptoms have always been rigidity and bradykinesia, no tremor to speak of
if i'm 'kicked in'
[90 % of the time, except for those dreaded 'hormone' days]
most people wouldn't know i had pd to look at me
i might be a tad twitchy now and again, but nothing major
i must drive my cats nuts
because they'll watch me shuffling around like a 150 year old
and then within minutes i'll be chasing them up and down the house
like a five year old
that's one thing that i relish
the enforced 'on' and 'off' times
have made me appreciate the 'on' times so much more
i am sillier than i've ever been in my life
i used to take a lot for granted
but not now
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janet paterson 20 august 1998
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in re titration and pat's new pd career
here's a message i wrote last month
[culled from the pd list archives using
"titration AND paterson" as the search criteria]:
-------------------------------------------------------
Date: 13/02/99 23:37 EST
From: [log in to unmask]
Subj: Re: Need advice / or a better medico
-------------------------------------------------------
hi all
At 21:13 1999/02/13 -0500, sherry wrote, in part:
>This morning I took my first SInemet CR 50/200 at about 9 with
>breakfast. At 11:30 I became extremely nauseaus and had to go to bed
>not being able to move a muscle without feelling like I was going to
>throw up. Later I developoed a Migraine. Now I'm afraid to take
>another Sinemet. Could the Sinemet have caused my problems or was
>it a coincidence?...
i would venture an educated guess that the sinemet doseage level
is the culprit here
is this the very 'first time' you've taken sinemet?
if so, i'm surprised that your neuro did not recommend very low and slow
'titration' i.e. adjusting the doseage level very gradually up
sinemet is infamous for causing stomach upset
for the first weeks or months of using it
the cr version, i.e. controlled release, would have the added 'benefit'??
of causing nausea slowly and constantly for at least 4 hours
when i first started sinemet
i took a half tab [i.e. 5/50] of an 'instant' 10/100 twice a day for a week,
and then bumped it up to three times a day for another week,
etc....
titrating sinemet is a basic fact of life with pd
200 mg [the largest size it comes in] as a 'first taste'
strikes me as almost sadistic!
if i were in your shoes
i'd verify the titration rate with my neuro
how many other parkies does your doctor treat?
at what stages of the disease?
we have to be our own best advocates
we have to learn about pd in our own self defense
this kind of [to my mind] sloppy prescribing of brain altering chemicals
is too common still and can be [and has been] health threatening
janet
janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
<http://www.newcountry.nu/pd/members/janet/index.htm>
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-------------------------------------------------------
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Archive maintained by Simon Coles
-------------------------------------------------------
finally, in re starting down a pd career path
here's my advice to all newbies
[regardless of age]:
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Date: 13/02/99 23:44 EST
From: [log in to unmask]
Subj: pd basics 101 for newbies
-------------------------------------------------------
for the first year newly diagnosed person with parkinson's
i recommend reading:
1. "An Algorithm For Managing Parkinsons Disease"
[search the pd list archives using BX: ALGORITHM] at:
<http://james.parkinsons.org.uk/>
and
2. "Psychosocial Factors In The Treatment Of Parkinsons Disease"
[search the archives using PSYCHOSOCIAL FACTORS] at:
<http://james.parkinsons.org.uk/>
and
3. "The Young Parkinson's Handbook"
by Arlette Johnson and originally printed by
The American Parkinson Disease Foundation at:
<http://www.apdaparkinson.com/>
and at the Harvard neurological site:
The Parkinson's Web
<http://pdweb.mgh.harvard.edu/>
janet
janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
<http://www.newcountry.nu/pd/members/janet/index.htm>
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-------------------------------------------------------
Back to the search screen
This is an archive of the PARKINSN mailing list,
hosted by New Information Paradigms.
Archive maintained by Simon Coles
-------------------------------------------------------
janet paterson - 52 now /41 dx /37 onset - almonte/ontario/canada
<http://www.newcountry.nu/pd/members/janet/index.htm>
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