David,
Your symptoms are very much like my ones. Your problem with your foot which
doesn't come immediately after getting up, is exactly the same I have with my
right foot. I gather that you, like me, have no trouble to get up in the
morning after many hours without meds. Your description of what happens trying
to walk during a wearing of fase could have been mine. The intensity of the
wearing off dykinesia has grown slowly during years, but can now be strong
enough to make it necessary to have a matress on the floor, because I can't
prevent falling out of bed. These symptoms are the most sure indication one can
profit from pallidotomy.
Because answering your questions would be a doublure on the list, I'll send
them to your private E-mail.
If you or somebody else who reads this has more knowledge about this complex of
symptoms I would appreciate to be informed.
Ida Kamphuis
id [log in to unmask]> schreef:
> I experience far worse periods of dyskinesia during my "wear-off" time in the
> evening: typically 3-5 hours after my last dose [5-6 PM] of levodopa. It used
> to last at least one half hour but never more than one hour. However, this
> May something happened... the dyskinesia sets in about 3 hours after last
> dose, is a terribly exaggerated version of the old dyskinesia, i.e., my limbs
> thrash around quite violently, my torso writhes and my head bobs
> uncontrollably [gives rise to very sore neck]. When I [try] to walk in this
> state, I violently goose step, threatening the poor floor. BUT... the real
> kicker with regard to this new symptom is... it can last nearly all night and
> prevents sleep. If it doesn't stop after several hours in bed, I can usually
> quell it by taking a 25/100 Sinemet... within 30-45 minutes it usually
> begins to diminish thereby allowing me to fall asleep, but frequently
> returns in several hours.
>
> By-the-way, Ida... what is your new med scheme??? I also experience
> debilating cramps in my right foot in the morning. It is really strange, in
> that for the first 15-30 minutes of the day, I'm able to ambulate without
> impediment [you couldn't tell from my gait that I was a PWP] but inexorably
> my feet/legs poop out and I'm rendered virtually immobile. I'm able to
> counter the immobility with several tactics:
>
> a) walk backward
> b) Take a few moments to "psyche" myself up, i.e., stand up very
> straight,
> place my seemingly palsied right foot next to my "more
> normal" left foot
> and tell myself that I'm going to walk normally... this
> usually results in 5-10
> "normal" steps before my right foot cramps return and it falls
> into its
> normal
> trailing attitude behind the left foot.
> c) start my drug regime for the day:
> -- one 25/100 mg Sinemet turbo charger, one 2.5 mg Parlodel, one
> 5 mg
> Deprenyl
> -- one 50/200 mg and one 2.5 mg Parlodel one half to one hour
> later
> and roughly every two hours
> thereafter until 5 or 6 PM when I terminate all
> drugs.
> -----------------------------------------
> David Barthuli
> 23 River Road
> Merrimac, MA 01860-2229 US
> -----------------------
> (508) 346-8209
> [log in to unmask]
> ------------------------------------------
>
