Sam,

I know you didn't ask me for advice, but I feel compelled to throw in my two
cents worth of advice (probably worth just about that much).  I am 61
diagnosed in 1997 and am one of the more fortunate ones whose symptoms are
progressing, but very slowly.  Ray's advice to do the things you love that
you can while you can is very good.  I decided to do that early on.  I have
to use common sense and not get myself in too many situations that could
leave me with few options in a medical emergency.  But I don't let that
worry override opportunities to do things that come my way.  I live in So.
California and live close enough to Las Vegas that I can make several trips
there a year.  If my husband or someone else is going with me, they drive.
If I'm going alone I fly Southwest because they usually have really cheap
flights and the 4 hour drive is just too much for me.  The last time I tried
it I got half way home and couldn't make it the rest  of the way. I found
the first hotel (turned out to be less than wonderful, but I holed up there
for a couple of days and was then able to drive the rest of the way.

This summer I had an opportunity to go to Italy.  My friend sings in her
church choir and they were invited to sing for the Pope.  So they put
together a two week tour of several Italian cities.  I was uncomfortable
going by myself so my husband suggested I take my adult daughter with me in
case of an emergency.  I did and it was amazing.  Not only did I get to see
Italy and even rode in a gondola but I had a wonderful shared experience
with my daughter.  I did fine and even climbed to the very top of the
leaning tower of Pisa (not an easy task even without PD but was so proud
that I did it.  I had one "incident" in the underground catacombs of a many
century old church in Rome.  I got sloppy with my medicine schedule.  I was
very tired and my Sinemet wore off much sooner than it should have.  I
couldn't walk and was sort of thrown into a state of dementia.  The tour
guide freaked out and admitted he had no idea ho w to get out of the literal
maze of catacombs.  Susan, my daughter, is very assertive.  She told him in
a nice way that he should "lead, follow or get out of the way"  He chose the
last option.  She found her way (and mine) out.  I sat down on the ground
just outside the church while she ran to the tour bus, got my medicine for
me and luckily there was a gelato stand nearby that also had soft drinks.
She brought them to me and 20 minutes later I was fine.

That hour of tenseness was such a small price to pay for the overall
experience.  We are planning a trip to England, Scotland and maybe Ireland
this summer.  She is also going with me to a poker tournament in Vegas.  She
will be the one playing the poker (I'm not good at it and my shaky fingers
make it worse).  But I fully expect to have a fabulous time.

I know this e-mail so far is totally off topic from what you wrote about so
I'll get to that now.  I have tried pilates a little bit and find they are
difficult for me and somewhat painful.  I am not familiar with Chi Gong and
though I dance when obligated (weddings, this New Year's Eve in Vegas, etc.,
but again, not my forte.  But I have been taking Tai Chi lessons off and on
for about three years and cannot say enough good things about it.  My neuro
recommended it to help with my balance.  It does that and so much more.  It
isn't just physical benefits that I gain from it, but mental relaxation as
well.  I have gone to studios where the lesson cost about $20.  I have taken
lessons that were in conjunction with my Curves exercise class that the
teacher gave us a price break on ($13.50.)  Recently I have been going to
the local senior center (I qualify age wise but they would let me
participate even if I didn't.  The teacher is outstanding and he charges
$3.50 a lesson and the lessons are every bit as good as the $20.00 ones.
Actually for me they are better because he is a kind and caring man.  He
tells every newcomer that they should push themselves just up to the point
where they begin to feel even a tiny bit of pain and then back off until it
doesn't hurt.  He says when you do that you are doing the perfect Tai Chi
for you.  He dims the lights in the room, plays amazing music that relaxes
you so much you can mentally transcend all of your cares for a few minutes.
He gives clear and precise instructions in a calm and relaxing voice.

If you are interested in trying Tai Chi, call your senior center and if they
don't provide the lessons they may be able to guide you in the right
direction.  I'm thinking the local "Y" might be a good place to try also.

I have also taken yoga lessons and find them to be very beneficial.  They
are a little more taxing than Tai Chi, but still very worthwhile.  And my
good guy at the Senior Center teaches those classes also.

Sorry this ran on so long but I wanted to give you my take on your question.
I really believe you owe it to yourself to try each of your options a few
times so you can make the decision that is right for you.

Please let us know how it goes and what you decide to do.

With kindest regards,

Claudia
61 with PD but still pretty spunky and am told I'm just sassy enough!  :-)



"I used to think I had ambition...but now I'm not so sure.  It may have been
only discontent.  They're easily confused."


Rachael Field

-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of Sam Weber
Sent: Wednesday, January 04, 2006 2:23 AM
To: [log in to unmask]
Subject: Re: Intro / Comp Treatments

Thanks for this info Suedee! Q10 seems to be quite a popular choice (I
started on it about a month ago as well) I am also taking antioxidants,
Omega 3 & 6, and fish oil. I have to make a decision regarding exercise soon
(considering Pilates, Chi Gong, Tai Chi and dancing) so would appreciate
info on your experiences in that regard. There also seems to be strong
indication that regular stints on a treadmill can help to keep strides
longer when walking. It would be great to try everything (I have a somewhat
obsessive streak... *grin*) but budgetary constraints force a choice.
Regards
Sam

-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]]On Behalf Of Sue Lifschiz
Sent: 03 January 2006 19:03
To: [log in to unmask]
Subject: Re: Intro


Dear Sam,
Your PD history, symptoms, attitude sound very much like my own, altho I am
25 years older than you.
I also avoided meds for a long time, but recently I started taking Requip
and
rasagiline because of the possibility that they might slow the progression
of
the disease.
As to alternative therapies, exercise is most important. (I prefer water
exercise.)
I have tried acupuncture, and I think it helps, but I don't have it
regularly.  I have also tried Feldenkrais, Pilates, and yoga.  Any of these
could help,
but for various reasons I haven't continued with them.  Chi Gong (an easier
version of Tai Chi) is great for balance and relaxation.
I take a lot of supplements with the hope that they will discourage
oxidative
stress:  Brain Sustain, CoQ-10, alpha lipoic acid, glucosamine sulfate,
NADH,
fish oil.  I also eat blueberries every day.
If you want more information about any of these, feel free to write me on or
off the listserve.
Best regards,
Suedee

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