On the first part, a neurologist told me I couldn't damage my nerves with exercise, no matter how much nerve pain it caused. That inspired me to walk again, eventually several brisk miles a day, ignoring the pain. If I hurt more the next day, I eased off. Having PN doesn't protect us from overuse injury, muscle pulls, etc.

The second part is inspiring and is an important lesson to all of us. NEVER ACCEPT A NEGATIVE PROGNOSIS FROM ANYBODY, ESPECIALLY FROM A HEALTH CARE PROFESSIONAL! Even if they mean well and only want us to be realistic, their ignorance is greater than their considerable knowledge, they don't know us profoundly in all our individual complexity, and their negative statements can be self fulfilling. If people believe their negativity, they give up, get depressed, and slide into painful decreptitude until death. The lesson is, never give up hope, never give up trying different things to get healthy, and never stop learning.

I try to avoid negative people. If a doctor tells you it's hopeless, find a more upbeat and supportive doctor. I was also told by a neurologist that my PN would get worse and worse until I couldn't walk anymore. Ha! Last week my wife and I walked for miles in San Francisco, including up and down hills and across the Golden Gate bridge and back. The PN hurt, but not to the point of agony or destroying my joy walking in that gorgeous city. This is 11 years after that bozo neuro told me the PN would be progressive.

Thanks for your great posting.

BRAVO!! David. I'll go down fighting too. I'm still making the trek to the pool every week in spite of everything. I am so glad for the joy in your post.

Love,
Billye

That's wonderful David--you are an inspiration!

Deb

You got that one right !
Six weeks ago (Sept 3rd, 9-3-06) one of my sons broke his neck and was diagnosed as a 'paraplegic''. "He would never be able to move, and probably would never be able to breathe on his own again". That's what the docs (surgeon) said on Sept 5th after the surgery to replace his cervical disc (C-5) and remove the burst fragments compressing his spine.

I refused to believe it, and refused to have him told all that crap.
He's now out of Shock Trauma, in a rehab hospital, can move his arms, breathes without the vent or oxy assist, and will have his 'trache' removed in a week or two. He can swallow and is on solid (kinda ) food. He almost has his electric wheelchair 'driver's license' (he negotiated 10 cones ) - and moved his knees ever so slightly together, yesterday- in a therapy session.

He asks if he'll ever be able to use his hands or if he'll
be able to walk out of there.
We keep telling him that :
"That's what they'll keep working with you on - in OT & PT.
We'll see what you can regain as the swelling in your spinal column subsides."
Each day, a new skill or movement is detected and is a cause for hope.
Hope for him and for all of us who love him so dearly.
His doc is a 'straight shooter' who pulls no punches and tells it 'like it is'-
but he doesn't really give us a cause for hope. He's on the worst case scenario track- serious & honest.
We have to look past that, he doesn't want us to be dissapointed or give false hope - but I believe that my son will do better & IS doing better than what was first told to us.

but did I touch/hit a tender spot here?

First off: get right on this...The chief neuro-cheese who'd said I should be in a 'chair' with the existing diagnosis was defensive from the getgo, as I'd been referred to him by an 'acolyte' who seemed to be positively panting to do a 'full seural biopsy' on me...It was conveyed in his letter to this guy his mentor. Also, the CIDP/Autoim. PN diagnosis was established by another chief cheese at an area to hospital [the rankings of 1-3 alternate year by year]. Add to that, the referring neuro [acolyte], used to be in the practice of my current treating and prescribing neuro...[a trifle ill will here? DUH]. SOO, from the get go with this one 'cheese', a doc, one I really respect for his neuro/pn researches, I just dished out the stuff, had to go with his acolyte...SOO, chapter 'n verse backing up MY opinons of the validity of a seural and opined that well...I think this one guy want's to play- as in ON ME?...I met the 9 of 10 rule from all ins cos I can find...and the Seural is truly a last resort and doesn't change anything treatment-wise! Well, This guy[big-cheese] was sort of taken aback...I was probably citing studies he'd not read yet? End result, agreed w/me! The letter he sent to the 'acolyte' simply stated "Patient is VERYwell informed'. THANKS TO YOU ALL!
Soo the old axiom 'never give up' is a RULE. Never accept, always question, always learn and KNOW..or try to. Isn't that all what we do here there and where-ever? That and help each other when we can!

Don't know about you all, but there ARE times I wish I knew about those 'Ninja' dart thingies and could start 'dispensing' them on occasion?

Bob, A PM is in order -

Super fuzzies and hugs a la 'e' world to you all! - j