MS is not destiny. Destiny is what you make of your MS.
When disaster struck what mattered was unflinching courage and a refusal to consider despair. ... (T)he most important gift to any child was an upbringing which would toughen him (her) up so as to be stoic and uncomplaining about life's pains and ready for its reverses.
The Road from Coorain (pp.8-9)
Jill Ker Conway
A lot of us carry around monkeys on our backs. Mine is MS. C'est la vie I guess, but I'm not sitting on my hands lamenting the situation. But it wasn't always like that. If you're up to it, read Discovery -- when I found out that I had MS, I wrote down some of my feelings to help sort out the maelstrom inside my head.
Its been about 10 years since I was dx'd with MS. And my thoughts turn to the wonderful things that have happened to me in that time. I see myself on a downward slope, trying to make the hill as flat as possible, trying to find something that will turn the descent into an upward climb.
Some people collect stamps, others collect butterflies, I seem to collect therapies in the hope of finding something to halt or fix this curse. Read on!
I found a website called MSOnly which has a search engine on the front page -- I entered 'therapy' and came up with a lot of interesting results, including Richard J. Korejwo's Alternative therapies. Its basic thesis is that MSers tend to use alternative medicine more than other people with chronic illness, even though they don't work but "they are provided by people who pretend to care more". What he says is thought-provoking and he takes shots at conventional medicine as well as alternatives. Reading a slab of text on the web is hard but I recommend it. NB: I am not giving up my forays into complementary medicine.
- Best Bet Diet
- Cari Loder
- Hyperbaric Oxygen Therapy (HBO)
- Life Extension Foundation
- Low Dose Naltrexone
- Bowen Therapy
- Dr Dan Milder
- Vitamin D
- Transfer Factor
- Other things
I suspect what we call MS is a number of things (a view now shared by some of the medicos - see "Is research showing that MS may exist as several disease forms"), and what works for one may not work for another. I also suspect that the length of time you've had MS influences how effective these treatments are. These are only theories though.
If you're looking for an overview of the world of MS, this seems pretty good Understanding Multiple Sclerosis from Pennsylvania Neurological Associates.
Someone who (it seems) also has made a hobby of collecting MS therapies is Karen Hesketh. Her search was not always fruitful, but Karen and Gordon's energy in pursuing the quest is to be admired. Have a look.
And Paul Jones' page of pages; another collection of hope & dreams.
And hope: you've got to have hope that there's something on the horizon. The latest on my horizon is EPF. And more hope: MS reversed in lab: "Scientists believe it may be possible to halt and even reverse the progress of multiple sclerosis" Put "chemokines" into Google and you'll notice 2 things: there are lots of references to it, and they known about it since '99 (so why can we have some?!)
If you're in Australia, send me an e-mail and I can try to point you in the right direction.
In the meantime, check out my page on disabled travel.
Have a look at New Mobilty - it's a more general disability sites but has lots of interesting pieces.
Sneaky parkers caught breaking much bigger rules. This article suggests that the people who illegally park in a handicapped space may have be guilty of other offences. Why not print out this article, and place it under offenders' windscreen wipers?
This very in-your-face adverisement comes from the Australian Financial Review of May 2-3 '98. It's the MS Society of Victoria. They get my vote.
An inspiration is Kirk Douglas. "Fighting back from a stroke, a Hollywood tough guy takes stock of his blessings." Who magazine (13.10.97) tells the story: "My stroke was God's way of saying 'Hey Kirk, you're not moving fast enough. You have things to do in this world'. I heard that message very clearly. I am 80 years old, and I do not know how that happened. ... We must be grateful for all the little things in life - walking, talking, moving, loving. Don't give up, and you have a chance."
The positive attitude can be difficult. In August 1997 I had an exacerbation of my symptoms. Caused by a bout of flu, within two weeks I was unable to walk. I went into hospital for a course of cortico-steroids (methylprednisolone), which seemed to have little immediate effect except to make me feel very weird. So weird that I fell over and broke my wrist. But six weeks later my health and wrist were on the improve. It's enough to make you take up the Swank diet (very low saturated fats) which has a demonstrated low-exacerbation rate amongst its adherents.
I leave this page with something my doctor wrote: A recipe for living.
My motto is: I plan to wear out, not rust out.
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