Hi,
In today's newspaper (The Sunday Times), the glossy mag's "A Day in the
life of" feature is about Cari Loader.
This is the summary paragraph:
"Cari Loder, 35, a lecturer and research manager, was diagnosed with Multiple
Sclerosis in 1992. On crutches, doubly incontinent and with failing
eyesight and memory, she was considering suicide when she chanced on a
a treatment that has kept her symptom-free for 18 months. Clinical trials
will begin on her patented treatment later this year. Her book, Standing
in the Sunshine, has just been published, and she will be the subject
of Channel 4's Cutting Edge on Feb 5."
The interesting points:
- she has MS, and was having a really bad time
- she happened upon a combination of:
- antidepressant
- coke (as in the cola drink)
- vitamin B12
which helped reduce her symptoms considerably
- with the help of her GP (General Practitioner, family doctor), and a food
technologist in New Zealand who she met via the Internet, she managed to
work out why the above combination helped her
- she is now active on the MS Internet support groups (like PARKINSN, but for
MS) helping other people try her treatment
Relevance to PARKINSN:
- even non-medical people can develop significant advances in treatment
- the Internet is a really cool tool to help promote and coordinate these
activities
- don't be afraid of setting out on your own path, we're all right behind
you!
<begin soapbox>
I've always found the distinction between "The Professionals" and "The
Patients" very strange, particularly when it comes to working out how to
manage PD. Its as if a few years in school gives you the right to have
opinions about PD, and living with it 24 hours a day for 10 years doesn't.
We *all* have something to contribute to the conquest of PD, and *all* our
perspectives are equally valid. Only in partnership with all the interested
parties - professionals, patients, carers - can we get a full picture of
this condition.
Every Parkinsonian is different. That's the nature of the beast. We are all
on a research project of one kind or another, whether we like it or not.
This work should be given the support and respect it deserves.
Some people are concerned that there will be a confusing babble of
misinformation (intentional or otherwise) - Barbara posted an article from
the N.Y. Times News Service about this last week.
I feel we all have to make up our own minds about various treatments, and
do whatever is best for our individual case. After all, it is in the end
the patient's disease, and while there are lots of people around to offer
help and support, in the end you must take responsibility for yourself.
So I look forward to hearing about lots of wierd and wonderful ideas!
<end soapbox>
Simon
--------- My opinions are my own, NIP's opinions are theirs ----------
Simon J. Coles Email: [log in to unmask]
New Information Paradigms Work Phone: +44 1344 778783
http://www.nipltd.com/ Work Fax: +44 1344 772510
=============== Life is too precious to take seriously ===============
