SteveA said:
There was an earlier thread on Sheldon Brown's health but I'm too lazy
to find it. Sheldon posted this update today/yesterday (today here /
yesterday there or something due to the international date line):
"October 25, 2006:
Saw the new neurologist this morning, the news isn't good. His
opinion is that my problem is MS, of the "primary-progressive" variety,
and that the best I can hope for from treatment is to slow the decline,
but that a reversal is not likely in the cards."
Sad news.
Sheldon's other posts are here:
http://www.sheldonbrown.org/journal/health.html
Gotta wish him all the best of luck.
SteveA
This is not about bicycles, but Sheldon Brown is such a central figure to
net-using cyclists, that I ask you to please forgive me on this topic. I
am not sure if Sheldon or his friends are 'listening' here, but I would
like to add a personal comment and make a suggestion, with the hope that it
might be communicated in some way. Warning: this is a long story and not
about bikes or fun, so unless you're a friend of Sheldon please change to
another thread.
My wife has multiple scelerosis. She started to have symptoms in 1988, and
was diagnosed within a few months. We had two very young children at that
stage, so as you might imagine this was a really low point for us. We read
all the stuff provided to us by the medical specialists, and the general
expectation was a wheelchair in 5-15 years. Jenny was not so badly affected
(in what is sometimes called a relapsing-remitting stage), but by 1991 she
was experiencing limb weakness, vision problems and a most horrid 'MS
tiredness' which was very different from physical tiredness.
Enter my mother, an inveterate browser of old books from second-hand shops.
She turned up one day and displayed her latest find: an old book written by
someone called "Dr Swank", apparently claiming to have some useful approach
to help MS. My reaction was "Oh, yeah, Swank-crank." I'm not always the
dutiful son, but I didn't want to disappoint mum so I read the book. It
was when I noticed that this old book had journal references that I paid a
bit more attention. It was based on a hypothesis formulated from several
epidemiological studies and the known distribution of MS in the population.
Eating the 'normal' amount of saturated fats in our everyday diet
statistically tended to speed up the progression of MS. Those who obtained
most of their dietary oil in polyunsaturated forms - typically from nuts,
fish, and some seeds - statistically fared better. The author had carefully
documented evidence from his own long term trials, albeit uncontrolled and
with limited numbers of patients. The stuff he wrote actually made a
certain amount of sense to me (with my chemistry background). I became
intrigued enough that I wanted to check out what others had found, and went
to the UWA medical library.
Please understand that I am not a medical doctor, but was quite familiar
with scouting through the primary literature. There was no absolute proof,
or double-blind trials, but there was a weight of evidence that supported
Swank's conclusions. Unfortunately, it also appeared that Swank's work had
been to some extent dismissed. From memory, I think the the Editors of The
Lancet concluded that there was insufficient evidence that diet influenced
the progression of MS. However, The Lancet does not publish primary work in
this area, and badly misinterpreted the published research findings. For
example, they did not seem to understand the difference between giving a
patient olive oil (a monounsaturated oil) as a supplement in addition to a
patient's normal dietary fat/oil intake, and actively reducing dietary
saturated fats while increasing polyunsaturated oil intake. They ignored
the epidemiology, they ignored Swank's findings, and they ignored the
effect of lipids in an MS-like model in mice, experimental autoimmune
encephalitis.
My wife changed her diet around that time. Far less meat, no sausages, no
cheese, no butter, using only skim milk, avoiding biscuits, avoiding normal
cakes. Making home-made cakes with sunflower oil to replace butter. Reading
all labels to cut out hidden saturated fats as much as possible. It was
quite hard to eat out, and quite hard to explain to family that she
couldn't eat that lovely home-made dessert.
Changes to diet are not a quick-fix, but a generally statistically helpful
slow-down. However, by 1994 things were consistently better than before,
and we had the confidence to have another child. Our youngest is now
twelve, and it has been about eighteen years since the first MS symptoms.
My wife doesn't ride a bicycle but most mornings she walks for 30-40
minutes, including a small amount of jogging. She still has a weakness,
particularly on one side, but she is consistently better than when she was
at her worst. Adoption of the Swank-type diet was made easier because my
wife and I are both chemists, but anyone with MS should consider it.
Unfortunately the web seems to have encouraged a number of what appear to
be 'quack' diets, which confuses things.
Other stuff can help. Stress can affect the immune system, so anyone with MS
should aim for a less stressful lifestyle. For a review of other possible
helpful factors, there is George Jelinek's book "Taking Control of Multiple
Sclerosis: Natural & Medical Therapies to Prevent Its Progression". George
is a professor of medicine at UWA.
Fairly recently in the news, nicotinamide appears to be a promising way to
slow down MS. Any and all treatments, whether diet, drugs, or lifestyle,
offer hope at a statistical level. As you might have gathered, I am
convinced that diet changed the course of my wife's illness, but there are
no guarantees. Even someone riding a bicycle intelligently and carefully
can be involved in an accident.
I have used Sheldon's great bicycle site many times, and so reading his
predicament is saddening in the extreme. I hope it is not too late for him
to fight back against MS.
For people unaffected by MS, I apologise for taking your time. I just felt
that I had to write this.
Cheers,
Vince
