Alan Bonander - Good write-up. Could not have done as well as I live with
the severe type RLS and am totally resentful and not at all objective.
After several months trying to get settled into a PD coping routine with
Sinemet I finally sorted it all out and was relatively comfortable with PD.
Then along comes Ekbom-plus and it is devastating me. Is there a disease
worse than PD? I can assure you that severe RLS is much worse. It is like
Chinese water torture. Along with the symptoms you mentioned you might want
to include "shocks" and "rhythmic spasms."
After about 10 people with Ekboms messaged at least 40 times on the RLS
bulletin board, there obviously was nothing we could do for each other and it
died. The only positive message from the Restless Leg Syndrome Foundation is
YOU ARE NOT ALONE. Somehow that didn't do it for us. You know what it is
like to go "off." Well, add to that a constant barrage of shocks and foot
and leg spasms about every 15 seconds lasting about 5 seconds and not easing
up until Sinemet kicks in. Oh it eases whilst walking but starts again as
soon as you sit down to rest. You simply cannot exercise it away. I can't
even imagine how someone who can't walk, or can't take Sinemet, copes with
the severe RLS. At least I can walk and do - all day thank you - and load up
on Sinemet in the evening and during the night.
For someone like me who coped nicely after some rocky starts, on Sinemet
CR 25/100 t.i.d., and lived by the motto "Less Is Best." it is most
distressing to be taking CR five or six times and regular once or twice at
night to span that CR lag time of 2 + hours. I never sleep more than four or
five hours before the leg shocks wake me up, yet my PD is always still well
controlled and I don't need anymore Sinemet for PD. However I can't just get
up, dead tired, and walk until PD symptoms appear before taking yet another
Sinemet - so I am basically easing RLS and incidently treating PD.
I have only met one other person on all the PD bulletin boards with this
PD/RLS combination. None of the "Night Walker" newsletters have even hinted
at this combination so I am sure it is very rare. I wish it didn't exist
frankly.
Joan Samuelson is doing a nice job with her Parkinson's Action Network.
NPF, PDF and PI gave very generous contributions. I am really mad at APDA
for not helping her and in fact undermining her efforts by opening their own
political action office. I hope all the other PD societies join together and
make a strong loud and effective representation for all parkinsonians. We
are going nowhere fast the way we are. We are so fragmented. If you want to
make a donation for research for cancer, heart disease, multiple sclerosis,
alzheimers or arthritis, you get one organization and the post office knows
where to send it. I just looked in our telephone book and all are listed with
address and phone number. Parkinson's is nowhere to be found. This is
disgraceful. Makes one want to resign from PD and try a different disease
with some real organization, recognition, clout and money.
Regards,
Barbara Yacos
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