Re: [TMIC] Possible cure?
Mary Ellen Eckhert (roquine(AT)mediaone.net)
Sun, 7 Jun 1998 10:53:34 -0700
I've taken Noni juice along with other therapies and supplements since last
September, on and off. I can't really say if it has been of specific help in
my case, but. I've been able to buy it for $23 per 12 oz.( I think) bottle
under the brand name of Pol'Noni, 100% pure Tahitian, not mixed with fruit
juice.
My diagnosis was ambiguous: Anteror Spinal Cord Syndrome (the one exception
to TM), but with no embolus identified, leading to a difference of opinion.
My illness struck suddenly on Friday, March 13, 1998, paralyzing me in one
hour. A swelling from C-4 to T-2 caused an ischemic attack which led to
tetraplegia. I was at UCLA Medical Center for 2 months: 12 days in ICU, 2
weeks in the hospital, and one month in the Neuro Rehab Unit doing PT
(including bodyweights treadmill exercise), OT and OTR. I was then
transferred to a SNF where I spent two months doing rehab and slowly gaining
strength. I had a suprapubic catheter, which I could not use well, due to
hand weakness. Within two weeks after returning home in mid-July 1998, I
was able to self-cath; the suprapubic was removed in August.
Now (almost 15 months later) I have regained the use of my legs and can walk
with forearm crutches. I 've also regained some hand function, and my
bladder works somewhat, so I still self-cath 2-3 times per day and wear pads
at all times. My right side is worse than my left, temperature and pain
sensations are minimal, and I also experience the cold burning and banding
along with the weakness and fatigue typical of TM and SCI in general.
I take no medication for spasticity, but for the last 4 1/2 months I have
been going twice weekly to the Center for Physical Health
(http://www.physicalhealth.com) in West LA for Feldenkrais
(http://www.feldenkrais.com/ ), Gyrotonics, and Pilates-based therapy, which
has helped tremendously.
I've been lurking for about a month now and am learning a lot from reading
this list. So far no one has mentioned Feldenkrais or exercise with the
Pilates/Gyrotonics machines. I'd love to hear from anyone who has tried
these approaches.
Mary Ellen
-----Original Message-----
From: Photo505(AT)aol.com <Photo505(AT)aol.com>
To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: Saturday, June 05, 1999 4:08 PM
Subject: [TMIC] Possible cure?
> Hi Everyone,
> Does anyone have any experience with using Noni juice? It's a natural
>substance derived from roots,that grow only in Tahiti. I just talked by
phone
>to a TM'er in Alaska who says the juice has done wonders for him. It's
>expensive and he is receiving a percentage of his referal sales. That has
me
>somewhat skeptical. Unless somebody knows that the Noni juice is
>another"miracle cure that don't work," I will go ahead and do some research
>on it for all. More people on the TMA has also received a letter from
Alaska
>about this juice that is sold by Morinda Company. Anyone that knows if it
>works as a cell regenerater,or if it doesn't do anything,let me know asap.
>I don't want anyone getting taken for almost $200.00 including yours truly,
>but I want to know if it does work for tm and lupus patients.
> Phil