Are you asking ME, Asdis? Sure, go ahead. BTW--does the weather get to you
(pain-wise) living so close to the Arctic Circle and all?
-Kyle
-----Original Message-----
From: Asdis Jenna Astradsdottir [mailto:[log in to unmask]]
Sent: Friday, October 29, 1999 10:51 AM
To: [log in to unmask]
Subject: Re: pain original from kyle was cp an aging,
may I forward this to my PT?
Asdis.
At 11:31 29.10.1999 -0400, you wrote:
>no sooner ask than done. this is kyles origional post.
>
>
>
>
>
>
>
>I had an interesting visit Friday with a "new" (to me) physiatrist who is
>the Dept. Chair of Physical Medicine at Ohio State University.
>
>The condensed version of his diagnosis, prognosis and treatment plan as it
>could relate to others in the same boat:
>
>On the subject of aging (paraphrased):
>
>Doctor: "Yes, Kyle, because of the spasticity, your musculo-skeletal
>system is aging much faster than someone your age without CP. This is a
>given. Muscles that are less affected by the brain lesions have learned
>over the past 40 years to adapt and take on the roll of those muscles more
>affected. The problem is, your bones and joints are subjected to stresses
>outside their designed scope (no news here). 40 years of spasticity have
>also deformed bones and joints, exacerbating the problem.
>
>Me: "I've seen my abilities decrease markedly in the past few years. Am
I
>looking at further degredation?"
>
>Doctor: "Yes"
>
>Me: "You're not telling me what I want to hear."
>
>Doctor: "This is the deal: Your level of spasticity and pain will
>increase as you age. Any physician or therapist that tells you otherwise
is
>lying or God. This is the hand you've been dealt and the cards will not
>change. Don't add denial to your list of complaints. This is not to say
>that we can't help you and that you cannot continue to walk, function
>independently and live to a ripe old age."
>
>Me: "What can I do to slow this process?"
>
>Doctor: "A better question might be, 'What can I do to decrease the
>spasticity which is causing my pain and fatigue?'"
>
>Me: "Okay."
>
>Doctor: "Okay, what?"
>
>Me: "Okay, what can I do to decrease the spasticity which is causing my
>pain and fatigue?"
>
>Doctor: "Good question: Now, spasticity in CPers is exacerbated by the
>four "F"s: Fatigue, Fronts, Fight/Flight response, and sitting on your
>Fat arse.
>
>Me: "Please explain."
>
>Doctor: "Fatigue: Studies have shown that neural firing rates increase
>with fatigue. In the spaz, both gross and fine motor movements are
>accentuated. Let's say your normal extension of the left elbow is a
>baseline155 degrees. If you get 5 hours sleep/night for 5 nights, your
>extension will decrease by 5-10%. Moral: No less than 7 hours sleep at
>night. Take a break when you're tired.
>
> "Fronts: Humidity doesn't affect spasticity, cold and
>barometric changes do. We're not certain why, but I believe this to be
>true. Some researchers have said there is no link, but for thousands of
>years, people have complained about aches during weather changes. I tend
to
>side with them. My theory is that when the barometer rises or falls, the
>synovial fluid in the joints can't change it's own pressure quickly and it
>exerts positive or negative pressure on the nerve endings until things
reach
>equilibrium. Moral: Move away from the Midwest, or any other area prone
to
>cold fronts, as fast as you can.
>
> "Fight/Flight: The more primitive reflexes are still present
>in CP adults: Babinski, Moro, etc. Being startled, angry or frightened
>causes muscles to tense--even more so in the CPer. Moral: Learn to relax.
>
> "Fat Arse: Kyle, your body fat content is a remarkably low
>11%, but if you want to take stress off those joints you should be thin
>almost to the point of emaciation. Six feet and 168 lbs is ok for a
>'normal' person, but you should be about 150 or lower (I weighed 126 right
>out of college). CPers are sometimes blessed by a fast metabolism that
>helps keep them thin. You're one of the lucky ones. Moral: low-impact
>aerobic exercise, poolwork, biking, eating like a bird.
>
>Me: "Anything else?"
>
>Doctor: "Yeah, we'll get you on 'Williams Flexion' PT (anybody know what
>this is?), pool work and massage. Might put you back in a brace."
>
>Me: "Forrest Gump model?"
>
>Doctor: "Yup."
>
>So, in a nutshell, that was my visit. Thought I'd let y'all know what he
>said.
>
>-Kyle
>
>
Asdis Jenna Astradsdottir and the wonderful cat Agatha Mist
[log in to unmask]
Tjarnarmyri 15
170 Seltjarnarnes
Iceland.
phone/tty 354-5611659.
cellphone 354-6981659.
* NEVER GIVE UP! * :-)
THE WORLD IS WONDERFUL!
GOD IS WITH YOU EVERYWHERE!
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