Hi fellow Parkinsonians:
I hope this is the appropriate appellation. My name is Jacqueline Warner
Mills. I live on the island of St. Croix in the U.S. Virgin Islands. I am
51 years young. My friends call me Jackie. I am a lawyer in private
practice, married with five children, grownup. I was diagnosed in March
this year. It took me a very long time before I accepted the fact that I
needed to see a neurologist. I first noticed my symptoms, stiffness of
joints, left leg that dragged, tremor of left hand, left arm immobile, more
than one year before I capitulated and sought medical help.
I was so afraid of what the diagnosis might be. I told myself that I was
working too hard, which I in fact was. I took off and went on a cruise to
the Mediterranean and Europe. I had a great time, and hardly noticed my
physical problems. However, once I returned, within two weeks, my old
tiredness, stiffness, weakness and malaise returned. Friends began to
inquire whether I had suffered a stroke. That's when I called a relative
who is a neurosurgeon and discussed my symptoms. He immediately ordered me
to get neurological tests done.
The rest of course is history. My fear was rooted in the fact that one of
my brothers, four years younger, had died from possible over-medication
complication after suffering with Parkinson's for five years. He had been
diagnosed when he was thirty-four.
I, like Sherry, often wish someone would give me a flight plan for this
affliction. I remember vividly one evening when trying to type on my
computer keyboard and I realized that I could no longer do so with my left
hand. I was devastated, especially so, because I could type more than
sixty-five wpm in my heyday. I also began to have great difficulty in legal
arguments, coming up with the appropriate words, and I had to tap-dance
around using descriptive phrases rather than the terms of art. Judges would
constantly ask me to speak up although I felt that I was speaking loudly. I
also began to suffer from what the neurologists said was a clinical
depression. I could not meet deadlines for briefs and motions. I felt
totally devastated.
Once I was put on Sinemet, I began to function again. The depression
continued to plague me, and was especially horrible at night. I would have
the most vivid dreams and would awaken from them hysterical and in a panic.
This occurred two or three times per week. I began to take St. John's
Wort. That helped for a while. One thing I should mention is that I am
also diabetic. Recently, within the last month, my neurologist adjusted my
medications for the second time. I now take half of a regular Sinemet
25/100 tablet and one CR 25/100 twice daily, and that appears to be
working well at the present time. I also discovered that St. John's Wort
interacts negatively with l-dopa, so I no longer take it. My doctor
prescribed Prozac, however I will not take it. Instead I've opted to
strictly control and monitor my blood sugar level. I've also had my
diabetic medication changed, gone on the sugar buster's diet, and started
to walk for exercise, forty-five minutes daily. In fact this week is the
first week that I have felt really great physically for over a year.
Hooray.
You will notice that I didn't put an exclamation at the end of the last
sentence. That's because I am composing this message on my Palm Pilot.
It's faster than the keyboard.
I'm hoping that the disease progresses really slowly and that a cure is
found soon. I suffered through this disease with my brother. I've saw him
hallucinate, witnessed his progressive loss of movement, and watched how he
suffered in myriad ways when he was unable to pursue his profession.
I'm hoping that this group will help me to feel more optimistic and keep
me on the cutting edge with relevant information. So far I'm impressed,
although a tad overwhelmed.
Jacqueline
Merlin H Brown wrote on 9/17/99 10:46 pm:
Sherry,
there is no magic formula for determining the speed of progression. if you
were to poll each of us, odds are you wouldn't find two people with the
same combination and level of medication.I have been blessed by a slow
progression. in nine years i remain a 11/2 on the 5 scale.I remain
confident that there will be a cure before my medications prove
ineffective. I started out with sinemet, but was able to discontinue it
when mirapex came along. i also take eldepyrl and amantadine. tht combo
works well for me. Keep a positive attitude. As the song says
,"accentuate the positive--eliminate the negative-- hold on to the
affirmative." If you want to talk further, e-mail me off the board murph
brown 57/9
On Fri, 17 Sep 1999 16:18:05 EDT Sherry Macredes <[log in to unmask]> writes:
> I am a 47 year old female who has just been diagnosed with PD. So far I
just
> can use my left hand very well and get shakes when I try. My left leg is
also
> starting to get the jittery feeling. Also there is the problem with
rigid
> muscles which is the worst! I guess I don't have much to complain about
> except lack of information. The doctors (and I have seen many) don't
seem to
> want to give you any info. I am starting the drug Mirapex and am having
some
> difficulty with nausea, but since the dose is still not enough I haven't
> gotten any relief from my symptoms. Do any of you know anything about
this
> drug and what I can expect? I have read everything I can find on the
web but
> that is just too depressing. The doctors say don't worry you should
have
> many years of productive living...somehow I just think they must have
told
> that to Muhammed Ali too and we all know that he isn't exactly
productive.
> What can I really expect? How long will I be able to continue to work
(I do
> accounting and use the keyboard alot which is getting very hard to do)?
> Should I be planning for assisted care soon? I know these questions are
> unanswerable but I wish someone could give me a ballpark figure...say
5-10
> years before you will require help with daily chores...or something! I
sure
> all of you went through this period of confusion. During the day my
husband
> and I discuss where we will put our backpacks on the next road trip, at
night
> alone in my thoughts I wonder where we will put my wheelchair. My
husband
> doesn't have a clue as to how bad this is, he just keeps saying when you
are
> better and I don't want to tell him I never be any better. What do you
say?
> Hey guy get real soon you will be changing my diapers! I would
appreciate
> any answers to unanswerable questions, just so I can tell someone who is
> going through the same problems has already helped. Thanks
