Quoted message said:Quoted message said:Sorry to hear about your poor health, Sheldon, because your site has
been a help to me.
I'll add my voice to those who are saddened to hear about your illness,
Sheldon. MS, in the words of Teri Garr, is "a vicious, nasty, sonofabich
of a disease." It's also completely idiosyncratic and unpredictable.
Some people are completely debilitated by it. OTOH, I read once about a
guy who went to bed one night completely healthy, and woke up the next
morning paralyzed in half of his body from MS. He fought back to a point
where he was able to do a Colorado "grand slam"--there are 54 mountains in
that state over 14,000' feet high, and he climbed them all.
May I offer some observations from the POV of a parent with a kid with
MS? (I'm not a doctor by any stretch of the imagination, and I could as
easily be wrong as right, but sometimes a detached perspective can be
useful.) If I read your account correctly, you've had an awfully large
number of those ridiculously expensive MRI's. Maybe your case is just a
difficult one to diagnose, but I think if I were in your shoes I'd be
asking the doctors why so many. My daughter's lesions are plain as day in
her MRI images. Are they doing anything for you besides taking pictures
and running tests? There are drug treatments out there, and maybe it's
time to start treating, not just diagnosing. At the risk of sounding like
a pharmaceutical company commercial, I suggest that maybe you should "ask
your doctor if Tisabri is right for you."
Judging from your posts and your web page, you are an intelligent, good
humored, tenacious, fit man. Use all of those qualities in your fight.
If bicycling gets too tricky for you, you might want to try yoga. My
daughter has done very well with it. Don't be like her in one other way,
though. If the docs tell you to jab yourself with needles,
fercryinoutloud do it.
Have you discovered alt.support.mult-sclerosis yet? It's a lot like
this group: fraught with spam, off-topic posts, and trolls. But there as
here you still meet some very knowledgeable, worth-while people.
NOTE TO ALL: it's kind of a silver lining to the dark cloud of MS that
it is linked surprisingly closely to bicycling. State and local MS
societies all over the country sponsor rides that raise substantial
amounts of money for MS treatment and research. The one I'm involved
with, for instance, raised over a million dollars last year. The Texas
MS-150, which IIRC runs one-way from Houston to Austin, has attracted so
many participants that they've had to put a cap on it: 13,000 riders!
MS is surprisingly common. If you went to school with 1000 kids, the
law of averages says that sooner or later two of the girls and one of the
boys will be diagnosed with MS. Even if you don't know anyone personally
who has MS, you know of well-known people who have it. Richard Pryor had
MS. So do Annette Funicello, Montel Williams, Teri Garr, Roman Gabriel,
David Lander, Alan Osmond, Louise Mandrell, and half a million others.
Cases range from mild to severe, and the onset can come late, as it has
with Sheldon, or early in childhood.
Anybody here who wants to do more than just offer sympathy to Sheldon
can join in and ride in an MS-150. Anyone who doesn't have time to ride
can donate. I will be posting a link sometime next year for anyone who
wants to support my ride, and I invite other riders to do the same.
Bill in Utah
__o | A dictatorship would be a heck of a lot easier,
_`\(,_ | there's no question about it.
(_)/ (_) | --George W. Bush (AP, 7/27/2001)