Sheldon Brown - health update

Discussion in 'Australia and New Zealand' started by SteveA, Oct 26, 2006.

  1. SteveA

    SteveA New Member

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    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
     
    Tags:


  2. Friday

    Friday Guest

    SteveA wrote:
    > 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
    >
    >


    Sheldons problems highlight the importance of enjoying every single day,
    as Sheldon has done, for you never know what tomorrow will bring.

    Friday
     
  3. Bleve

    Bleve Guest

    Friday wrote:
    > SteveA wrote:
    > > 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
    > >
    > >

    >
    > Sheldons problems highlight the importance of enjoying every single day,
    > as Sheldon has done, for you never know what tomorrow will bring.


    A few years ago (3 not, I think, it's a blur) I lost a very close
    friend to cancer. It reminds you that we never know when our time is
    up, and to live each day to the fullest, and that minor arguments about
    what colour bike is best mean nothing in the long run.

    Ride your bike, it's fun and good for you. The time you're riding is
    some of the best quality time you'll ever have - if it's busting your
    lungs and legs groveling up Baw Baw at 40rpm, or cruising Beach Rd with
    a 25kn tailwind, or commuting into a rainstorm, or riding an MTB
    through some nice singletrack, or towing your kids in a trailer, ride
    .... Trev loved to ride, every time I get on my bike I remember the last
    time we rode together with a smile.
     
  4. SteveA wrote:

    >
    > 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
     
  5. Friday

    Friday Guest

    Vincent Patrick wrote:
    > SteveA wrote:
    >
    >
    >>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
    >
    >
    >


    Thank YOU for sharing it with us.

    Friday
     
  6. philipD

    philipD New Member

    Joined:
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    Can't help but feel for Sheldon. I was diagnosed with Primary Progressive MS four years ago. One of the things you soon realise when reading other people's stories is that everyone's version of MS is different. For me it meant I got serious about being in the best shape I could be. Cycling has become an absolute essential part of my life. I used to walk for exercise but the MS means I can't control my foot as it hits the ground which destabalises my knee, which in turn makes my leg 'wobble'. When you are clipped onto the bike this isn't an issue.

    By the standards of some cyclists the kilometres I do in a year may be small, I did 5200 last year and set myself the target of 6000 for this year. I passed that last night and have revised that target to 7000.

    The main reason I wanted to post this was that when you are first diagnosed and start looking for other peoples stories on the net it is unusual to find anything other than bad news. This is the affirmation I use - 'I have MS, it doesn't have me'.

    Phil.
     
  7. cfsmtb

    cfsmtb New Member

    Joined:
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    Excellent post, thank you for sharing your families story with us. Interesting how last nights episode of Catalyst had a mention of using monoclonal antibodies against MS.

    http://www.abc.net.au/catalyst/stories/s1774083.htm
     
  8. OzCableguy

    OzCableguy Guest

    "Vincent Patrick" <[email protected]> wrote in message
    news:[email protected]
    > 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.
    >


    Another one that's worth a read is Peter D'Adamo's Blood Type Diet -
    http://www.dadamo.com/.
    Some of his conclusions are a little over the top so he's drawn a bit of
    flack from some health experts because of that, but on the whole there's too
    many co-incidences to dismiss his findings in total. There are many
    anecdotes from people who have come back from previously incurable illnesses
    and/or extended their lives well beyond expectations.

    --
    www.ozcableguy.com
    www.oztechnologies.com
     
  9. philipD wrote:
    > Can't help but feel for Sheldon. I was diagnosed with Primary
    > Progressive MS four years ago. One of the things you soon realise when
    > reading other people's stories is that everyone's version of MS is
    > different. For me it meant I got serious about being in the best shape
    > I could be. Cycling has become an absolute essential part of my life. I
    > used to walk for exercise but the MS means I can't control my foot as it
    > hits the ground which destabalises my knee, which in turn makes my leg
    > 'wobble'. When you are clipped onto the bike this isn't an issue.


    So, how do you handle starting and stopping?

    I have a lot of trouble getting my leg over the saddle, a lot of
    trouble clipping the second foot in, and worry that my leg will fold up
    when I put it down as I come to a stop...

    I also worry about stalling out on a climb and not being able to get a
    foot down in time. I've already had one fall from this.

    I am still riding my Greenspeed trike, which gets around all of those
    problems, though getting up and down from the low seat is a bit of a
    challenge...I try to stop near a parking meter or sign pole or
    something similar that I can use as a handhold to get up and down.

    Even so my legs have become so weak that I generally average less than
    10 kph, and have little endurance...

    I had pretty much given up on bicycles a couple of months ago, when I
    still though my condition might be curable. Now that I've had the
    discouraging news that slowing the decline is my only reasonable hope,
    I'm thinking of giving it another try...

    Sheldon "PPMS" Brown
     
  10. philipD

    philipD New Member

    Joined:
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    Messages:
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    0
    My problem is the left leg, so the right leg goes over the saddle, clips in first and provides the momentum while I fiddle around getting the dud foot in - this sometimes means grabbing my knee so that I can lift the leg high enough. When I stop the dud foot comes out first.

    I should say that the fatigue many people experience is not such a problem for me. I really only get tired at the end of the day - my neurologist suggested that if I didn't want to have to go to bed so early I should stop getting up so early.

    Phil.
     
  11. Bleve

    Bleve Guest

    Sheldon Brown wrote:


    > I am still riding my Greenspeed trike, which gets around all of those
    > problems, though getting up and down from the low seat is a bit of a
    > challenge...I try to stop near a parking meter or sign pole or
    > something similar that I can use as a handhold to get up and down.


    Sheldon, it's awesome that you're tootling around on a Greenspeed, I'm
    friends with the people that make them, they're just down the road from
    here. they'll be thrilled to know that they're involved in keeping you
    on wheels. My mum had the same problem with a low bent, and we ended up
    trying her on a very upright trike, but that'd be a bit of a last
    resort. Maybe you could rig up a carrier for a walking stick or some
    other device to help you get upright?

    > Even so my legs have become so weak that I generally average less than
    > 10 kph, and have little endurance...
    >
    > I had pretty much given up on bicycles a couple of months ago, when I
    > still though my condition might be curable. Now that I've had the
    > discouraging news that slowing the decline is my only reasonable hope,
    > I'm thinking of giving it another try...


    Fight it all the way.
     
  12. I mentioned:

    > > I am still riding my Greenspeed trike, which gets around all of those
    > > problems, though getting up and down from the low seat is a bit of a
    > > challenge...I try to stop near a parking meter or sign pole or
    > > something similar that I can use as a handhold to get up and down.


    Bleve wrote:

    > Sheldon, it's awesome that you're tootling around on a Greenspeed, I'm
    > friends with the people that make them, they're just down the road from
    > here. they'll be thrilled to know that they're involved in keeping you
    > on wheels. My mum had the same problem with a low bent, and we ended up
    > trying her on a very upright trike, but that'd be a bit of a last
    > resort. Maybe you could rig up a carrier for a walking stick or some
    > other device to help you get upright?


    I do carry an antique walking stick on the Greenspeed, it fits along
    the top of the "keel tube", the end goes through the bottle cage, the
    handle hangs over the front of the "bottom bracket" and it's secured to
    the keel tube by a toe strap.

    However, this isn't stable enough to use to lift myself up, I generally
    need something taller and immobile.

    Sheldon "Tricyclist" Brown
     
  13. Sheldon Brown wrote:
    > I mentioned:
    >
    >>> I am still riding my Greenspeed trike, which gets around all of those
    >>> problems, though getting up and down from the low seat is a bit of a
    >>> challenge...I try to stop near a parking meter or sign pole or
    >>> something similar that I can use as a handhold to get up and down.

    >
    > Bleve wrote:
    >
    >> Sheldon, it's awesome that you're tootling around on a Greenspeed, I'm
    >> friends with the people that make them, they're just down the road from
    >> here. they'll be thrilled to know that they're involved in keeping you
    >> on wheels. My mum had the same problem with a low bent, and we ended up
    >> trying her on a very upright trike, but that'd be a bit of a last
    >> resort. Maybe you could rig up a carrier for a walking stick or some
    >> other device to help you get upright?

    >
    > I do carry an antique walking stick on the Greenspeed, it fits along
    > the top of the "keel tube", the end goes through the bottle cage, the
    > handle hangs over the front of the "bottom bracket" and it's secured to
    > the keel tube by a toe strap.
    >
    > However, this isn't stable enough to use to lift myself up, I generally
    > need something taller and immobile.
    >
    > Sheldon "Tricyclist" Brown
    >

    I was unable to walk much for a while a couple of years ago, and found getting
    up out of a chair or car seat next to impossible.

    I found a broomstick (with a rubber end) just the job, it was tall enough that I
    could 'walk' up it with my hands to get up, and then use it as a rather long
    walking stick, like the old fashioned ones used be. And there are different
    thicknesses of broom handle you can get too, I found the thicker ones easier to
    grip & gave me a better feeling of security while I scurried, rat-like, up its
    length.


    --
    Karen

    "Reverse the polarity and invert the particle flux!"
    "You mean put the batteries in the other way?"
    "...yes."
    -Star Trek (any of them)
     
  14. davidm

    davidm Guest

    Sheldon Brown wrote:

    > However, this isn't stable enough to use to lift myself up, I
    > generally need something taller and immobile.


    I think GS make a handle for less mobile people to get out of their trikes.
    It's like a very heavy duty wing-mirror mount, that's threaded to screw onto
    the kingpins. If used in combination with a couple of loops of velcro or
    shock-cord as a handbrake, such a thing might be your answer. I's sure that
    GS could make you one if you haven't got a buddy with a lathe.

    Cheers
    David M
     
  15. Tex

    Tex Guest

    "Sheldon Brown" <[email protected]> wrote in message

    > I do carry an antique walking stick on the Greenspeed, it fits along
    > the top of the "keel tube", the end goes through the bottle cage, the
    > handle hangs over the front of the "bottom bracket" and it's secured to
    > the keel tube by a toe strap.
    >
    > However, this isn't stable enough to use to lift myself up, I generally
    > need something taller and immobile.


    Sheldon,

    A Greenspeed rider here in Aus had special handle fitted to his trike to get
    in & out. See this page and scroll down....

    http://www.fuse-recumbents.com.au/happycustomers.html

    Cheers,
    Tex
     
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