I have MS and manage well. This is a sharing of some experiences, opinions, and recommendations. Here is some advice that's helped, some theories that make sense, and some useful links in a sea of confusion and despair. | ||
DownPage Links: | Flutterby Theme. A few years back, Bob Bell, an old scouter and mentor of mine, gave me a further lesson by retrieving the meaning of his life after disabling heart troubles. By perseverance and following his inner heart he strengthened his outer heart and stayed with us many more years. When told to take it easy he walked a many miles a day! One day Bob noticed a nice butterfly pin my daughter was wearing and remarked on the beautiful "flutterby". It was one of those time-stands-still insights. Bob's name was much more suitable - do not these creatures "flutter by"? The flutterby is also a favourite symbol of regeneration and resurrection. So how much better a theme for our encounter with MS than a flutterby? What better symbol of hope? | ![]() |
Quotes are in Green Text. |
MS is a nasty disease that brings despair because it is without cure, because it is without known cause, and because it is an unpredictable rogue disease. But through the web, a community of hope and help exists. It's people sharing their stories. People in all walks and from all places offer insights into health. The emphasis is on coping. People encouraging people ... both the afflicted and their helpers. One finds both wise and foolish opinions, most of which are offered with enthusiasm and conviction. There is much silliness to be found. Some of the ignorance out there borders on the criminal - many cons offer miracle helps. Of course it is so - we are a free society, and the internet is simply an extension of ourselves. But rising to the top is much that is good and true and that is what I've tried to collate and present some of.
"Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world." Linus Pauling
The information available on the web is extensive. The teaching and research medical colleges are on line with their material, often in the latest multi-media formats. Those who make their living by offering help are on line. There are clinics from mainline through alternative and some beyond the reach of law. As is often the case in these days, a person with an affliction may come to know more of that one thing than the doctors who must know many things. There are as many opinions as people. It was ever thus.
It is a remarkable time of progress in understanding and treatment. There
are many new avenues of help. For most, there is management of their circumstances
and reduced rate of decline. For some, there is such improvement that they
walk again, they work again, they hope again. And for very few, there seem
legitimate healings taking place.
However it is all in our own hands, a consequence of our own attitude,
a measure of our own hope. There is no consensus among the medical profession
nor even among the MS societies around the world. One must oneself, decide
step by step what works, what is suitable, what is worth trying. MS is
a slow disease. So also is the understanding of it slow. So also is the
learning of what might be helpful slow. So also are the experimentation
and the change of life style issues, slow.
Here are links to the best help I've found. It is a mixture of mainstream
and alternative sources.
The main medical community regrettably have little to offer. The disease
has no cure, and so they have no opinions. There are drugs now available.
There are 3 such families - the ABC's. The Antiferons work with the immune
system. The Beta xxx, Copaxone is a clever decoy for the myelin attacking
cells. They are expensive (up to $20,000 a year), have varying degrees
of side effects, and seem to be effective in about 1/3 of the tested populations.
They do not give any outward appearance of lessening symptoms, but to various
degrees appear to slow the rate of progression of the sclerosis as observed
by periodic MRI's. The alternative medical community has much to offer.
Their principle characteristic is the hope they offer. They encourage a
postive attitude. Most are also characterized by promoting health. If one
can live as positively and as healthy a life as one can, the body will
help itself to remarkable lengths.
MS seems to either cause people to despair or to re-focus their lives.
The first decline into depression and increasing immobility. The second
live as best they might, full well understanding the serious nature of
the disease. The latter may be said to seek "healing" when "curing"
is not an option. It is a distinction worth exploring.
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The Main Thing - The Best Bet Diet: | ![]() |
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![]() "It is our belief that the hypothesis presented by Ashton Embry Ph.D, for the cause and most effective treatment of Multiple Sclerosis, in his series of essays on the subject, is not only plausible and credible but also represents the most commonsense approach available to sufferers intent on fighting this condition."This extremely active group is an excellent source of support and information. They are keen on help to those new to dietary response to MS. The Best-Bet Diet Support Group is hosted by the MSRC (Multiple Sclerosis Resource Centre) in the UK, who collects many other good advice and who publishes Pathways, a newsletter both by mail and on-line on topics of interest to the MS population |
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From My Own Experience | ![]() |
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Medical References | |||
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![]() ""This site is designed as an introduction to multiple sclerosis for medical students and physicians in training. It is not a comprehensive guide to the disease. As such the information may not be sufficient to address specific patient problems and these should be handled by physicians familiar with the specific clinical details relevant to the individual patient. We invite comments from all users of this site." |
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Help Groups: | ![]() |
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![]() Here is much information about the disease, progress in MS research, available services, details about fund raising events and donation opportunities and quick access to the MS Society in your region and local community. This is mainstream medical help and advise. They are a principle support and help for most personswith MS.. |
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![]() "We are people sharing information on CURING Multiple Sclerosis. Join this group and get a support and knowledge necessary for curing and preventing reoccurrence of this disease. We are discussing about: Mercury, MSG, ASPARTAME, Lectins, Amalgam, Blood type Diet, Hyperberic Oxygen therapy, Cleansing bowels Dental cleanse kidney, liver and Gallbladder cleanse. massage, Herbal formulas, Parasite killing herbs, enema, salty water, Zapper,"This enthusiastic group is definitely alternative - to the extreme. They are also very angry at the medical establishment. Yet much of their discussion is very worthy. They are frank, honest and supportive. |
21 May 07