Dear Sandy,
What are you doing up at almost 2 AM?  Sandy dear, I am proud of you and you
should be proud of yourself.  I think you are doing very or even
exceptionally well for 21 years of PD; keep it up.  I know it is very
difficult for any PWP to struggle on especially when facing this lousy
disease alone.  Actually, you are not alone because you have all this
support out there, but there's no one there to remind you that it is time
for your Sinemet like I uses to do for Barbara, or making sure it is on an
empty stomach.  I was a most willing CG!  I turned over all the PD meds over
to our neuro for her needy patients. My bestest of everything and a million
hugs,

Michel

----- Original Message -----
From: "Sandra Norris" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, March 20, 2001 1:37 AM
Subject: UPDATE!


> March 19, 2001 Monday
>
> Hello, I am finally thinking clearly today. The medication combination
that my neurologist is trying me on has given me some relief. My doc(Dr.
Marcus) and I discussed a lot of things on March 15th. I took my "questions
and concerns" form. We first discussed the issue I had with pain. I am very
thankful that this has been dealt with. This may be a little offensive to
some. In order to get my severity of pain understood by my neurologist, I
asked him if at sometime in his life had he ever been kicked in the
testicles. He looked at me seriously and said "Yes". I then asked him, at
the time he had been kicked, could he have made any kind of simple
decisions? Like what to eat or could he complete any simple task? He said
"No". I then told him to imagine that that intense pain would not go away
for 10 days at a stretch. By deciding to be bold, I had the relief for pain
that I have needed for a long time now.
>
> Now that I am in my 21st year of pd I have been having a question nag at
me for quite some time. To be honest it has been troubling me now for 2
years. I knew now I felt I was strong enough to handle the answer. The
question being, what stage have I progressed to?
>
> For those unaware of the STAGES OF PARKINSON'S DISEASE:
>
> The following scale, developed by Hoehn and Yahr, is the most widely used
one to describe PD:
>
> Stage I: Signs of Parkinson's disease are unilateral(affecting one side of
the body only).
>
> Stage II: Signs of Parkinson's disease are bilateral(affecting both sides
of the body). Balance is not impaired.
>
> Stage III: Signs of Parkinson's disease are bilateral and balance is
impaired.
>
> Stage IV: Parkinson's disease is functionally disabling.
>
> Stage V : Patient is confined to bed or wheelchair.
>
> **************************************************************
>
> Please let me mention before I go any further. These stages are not
written in stone. Please do not let these frighten anyone. Each individual
is unique and different in the severity of their pd and the severity of
symptoms.
>
> I asked Dr. Marcus what stage, while being on meds, have I progressed >
to.
> I asked Dr. Marcus what stage, without any medication, have I
> progressed to.
>
> Dr. Marcus did something interesting. He looked at me and very frankly
said, "Sandra, you tell me what you believe the answers to be." This is why
I like my neurologist as much as I do. We have a relationship. What I feel
and think is important to Dr.Marcus. He thinks enough of me to respect how I
feel and to respect my thoughts.
>
> I took a deep cleansing breath. I thought for a minute. I looked at my doc
and said; "With medication at its optimum levels I feel that I am in between
Stages 2 and 3. Without medication I am in the final stages of 5, critical
care." Dr. Marcus said that I was absolutely correct. We discussed that it
is very, very, important that I do all that I can to keep the sinemet
working as it is. I am on the same amount of sinemet now as I was on when
the neurologists first started me on it. I am so thankful for this. It takes
constant work everyday to achieve these results. Nutrition, excercise, good
attitude, and keeping myself knowledgable about current info on pd.
>
> The next thing Dr. Marcus and I discussed was the best clinical trial
ongoing that Dr.Marcus would like to see me be a part of. That is the Amgen
Drug Trial. I will be learning more about it at the Spring Rally with PLWP.
>
> Then we discussed how long I should be able to put off any kind of brain
surgery. Dr. Marcus said if I continued to remain responsible and actively
involved in my health and treatment of the Parkinson's, he believes I sould
be able to put off any kind of brain surgery for 15 more years. I had tears
in my eyes, immediately looked toward heaven and spoke a prayer of
thanksgiving.
>
> I still know that there will be days that I will feel 70 or 80 years old.
Yet, I also know that there are still symptom-free days for me. PWP'S and
this list and PLWP have made such a difference in my life. I feel so much
more alive. I love you guys with all of my heart and feel honored and
blessed every single day to be able to put to good use the past 21 years
here on the list and on Sandy's Parkie Porch. Nan and Bren, it will take me
a lifetime to give back all that you have made possible for me.

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