-- [ From: Donna Kipp * EMC.Ver #2.10P ] --
Brian, You are in the right place to get lots of good advice. I thought
I'd put in my two cents . If I understood your letter correctly all you
are taking for PD symptoms is Eldepryl. Eldepryl has little or no
affect on symptoms. It sounds as if you need to talk to your neuro
again . I have been diagnosed for nine years and started a Young PD
support group( which after 7 years I have resigned from) and get
several phone calls a month from people who are newly diagnosed. Your
comment that the disease is progressing very quickly is one that I not
only have experienced but is also one I hear all the time. I think in
many ways the first year after diagnosis is the worst. For me and many
others you look for every symptom and find them there and knowing that
PD is progressive feel that every symptom is just going to get worse.
Well, that has NOT been my experience. Symptoms come and go. Don't ask
me why but there seems to be a rythmn to this disease that you become
accustomed to and don't panic when a new symptom emerges because you
may find that after a while or a meds adjustment it disappears.. That
is not to say that the disease does not take its toll . It does, but it
is a disease it is not you. DO NOT LET IT TAKE OVER YOUR LIFE!! Some
practical advice that I recommend :
1. Educate yourself learn as much as you can about meds and this
BB is a great way.
2. EXERCISE- every day -no excuses!! -stretching or range of
motion exercises 3. Choose your neuro carefully!! Make sure he
has lots of experience with PD. A movement disorder specialist
is preferable but one who LISTENS and you can establish a
rapport with.
4. Keep a diary. Starting today whenever you change symptoms or
meds or the way you take them make a note. This will prove to
be invaluable to you in the future - Trust me, you will forget
5. When you are having trouble with your symptoms or meds make up a
chart or table and chart your meds and symptoms . You may see a
pattern and sometimes a small adjustment in meds will be all you
need to straighten you up again.
I hope I have been some help. Remember PD is not for sissies but it is
NOT the end of the world .............Donna
