It seems that every week we 're hearing about some new drug, some new study, or some new regimen that is going to change how we deal with MS. It's overwhelming. 10 years ago when I was diagnosed there were only a handful of treatments and I could list them all and tell you how they worked. Currently there are around 30 drugs or treatment regimes being used. And that doesn't include the countless drugs and therapies still in the research process.So it's no surprise that people will say to me, and probably you, "I thought they had found a treatment" or "I thought they found a cure".
In discussing this with my neuro last week, he suggested not to try to focus on all the research still in the early stage (that's a full time job), but instead focus on what's available. And ignore the press releases about "new treatments possible" based on testing on flatworms or some such thing. The press releases to pay attention to are the ones that say "New treatment for MS now available".
Good advice if you are one to get your hopes up at the slightest provocation.
It takes years for a treatment or drug to reach the population that needs it; years of study, and testing, and development, especially for a disease such as MS. It's not like a bacterial infection that once treated, goes away fairly quickly. It has to be followed for years to determine progression or remission. That's why it seems so slow to us. It IS slow. But slow and steady wins the race.
S.
Picture credit: Photo taken by Erin
Tortoise and Hare by Nancy Schon; Copley Square; Bronze on brick; May 19, 1993
5 comments:
That's exactly what I'm on about.
The problem with someday is that it interferes with what is happening right now.
Someday is a promise.
Right now is what is happening right now.
Get with the program folks.
Okay, I must admit I was, quick to anger.
Let us make a more rational answer.
The problem with theses quick pat answers (I thought they'd found the cure) is that they are actually worse than just shutting the Hell up.
They leave me quite ambivalent...
Charles,
You may be quick to anger but just as quick to cool down.
I understand your frustration. I feel it as well. But I'd rather sacrifice a whole lot of rats than one person with MS. And that's why we have to wait.
The pat answers indicate at least some awareness of the disease. They give me an opportunity to say, Nope, No cure yet. How about donating to the MS Bike Tour I'm doing so we can find one?
S.
Too right! I made up my mind ten years ago (ditto!) to concentrate on the things I can do well and leave (to others) those I cannot manage. That includes cures, treatments and preventative measures for MS.
My main failing (to myself) is forgetting that promise. I have really good days when I allow myself to live that promise - like today. Thank God for it.
Take care.
Shirl,
I try to limit my after work commitments to things that use my talents. I might be able to stuff envelopes and the like, but I'm better utilized on a stage somewhere with a microphone or speaking in front of a group interested in learning about MS. That's what I do best. Researching MS is hard, hard work, and I don't have the educational background to understand a fraction of what I read (and it's alot). So I leave the hard work to the docs and researchers and see what I can do to raise awareness and money for the cause.
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