I agree with Nide44 on this. I went from having a mountain goat's balance before getting PN, even with a 50 pound backpack on, to what a neurologist called "unsteady on his feet". I tripped several times a day, and lost all confidence while walking.

Ayengar type yoga helped my balance tremendously. I'm no longer the mountain goat I was before getting PN, but have good balance and confidence now.

The basic principle is to work on your balance every day, and it will improve as your brain and muscles learn to make sense out of the changed sensations from your legs and feet. You can make up your own exercise program with a 10 or 12 foot long 2 x 4 beam on the floor. Start out walking both directions near a wall for support and confidence, looking at your feet and the beam as needed. Progress to walking away from the wall, progressing to looking at a spot on the far wall. Walk slowly. Walk quickly. Walk heal to toe. Walk backwards on the beam. Walk on curbs as you gain confidence. Your balance will improve, even if your PN gets worse.

Daily exercise helps. It sounds like you garden. While excellent exercise, gardening doesn't work on your equilibrium per se, or your "cross patterning" (see http://www.google.com/search?q=%22cr...en-US:official ). I found that walking daily, as much as one can without injury or increasing soreness, pretty much ignoring the PN pain, was and continues to be extremely theraputic. We have an aging large older dog that needs the exercise for physical and mental health, so she is our motivation for a 45 minute brisk walk every day. I still have PN pain and numbness, but it is tolerable and hasn't gotten worse in years. You and everybody else on this board should be so lucky (that's a prayer for people with progressive, crippling PN).

You might find some good ideas for coping and therapy in the "Sticky" section at the top of the main PN forum thread listing page. I've got a three part posting there starting with #18 at http://forums.braintalk2.org/showthr...p?t=177&page=2 . Good luck.

Weird--all I need do is look up and I get dizzy, usually only if someone is standing close to me. Kev knows that when we are standing close, he has to keep an arm around me because when I look up to him, I tip over backwards--thank God he is always prepared to catch me--funny thing is, he is only a couple of inches taller than me. If I close my eyes, I sway too, but I can still do that "stand on one leg" thing for a very short time, as long as I really concentrate.

Weird how we all have similiar symptoms and yet so varied. One thing we all know is that we never doubt another when they tell what they are feeling, we all know neuropathy treats us all a little differently, yet the same.

Deb

Practice!!!
 

For my first few weeks of therapy [about 3-4...] I COULD NOT DO IT!...practice, and other supportive, strenghtening exercises.... well, by week 5 Heck! I could/was doing it! It was a sort of creep up on you CAN-DO!!! It was kind of a smack on the head big YESSS!
While your current nerves are mis-directing, good therapy aspects Can and DO retrain other nerves to do the job. It can be a slow and must be a gradual and progressive process. IF you over achieve, doing too much too soon you can do MORE damage, a thing none of us wants, ever.
Get smart, go smart, go slow, go progressively slow & smart and Get there!
I was told over a year ago by a 'second opinion' guru that IF I HAD X diagnosis, I HAD to be in a wheelchair.. my response was, I got the treatment I need, and I am too durn stubborn to give up in that way... I can drive, walk [not far tho]and can tryto be my own independent person...I DO NOT see any fat ladies [no offense here to those who've gained weight inadvertently...] singing my demise of late...
Oh, BTW I absolutely FAIL any 'eyes' closed test w/certainty! DUH! How FAR can one 'list'? LOTS

Good thoughts, heart and strength to go on -we all get there-whereever 'there' is! - j

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.

To David
 

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. :mad:

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 :rolleyes: ) 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.

Um forgive me for being a 'fencepost'...
 

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

PN is definitely weird!
 

Thanks, all, for sharing some of your symptoms. I have a lot of them and find my balance getting worse. Had my first fall last week but luckily only skinned my knee.

Often, and usually in the evening, my bare feet feel like they are stepping in something wet. Of course the carpet or tile is completely dry. That is a very odd feeling.

Deb - I also have to concentrate on picking up my feet when I walk and since my right foot is more painful that the left, I have a slight limp to protect it.

Well, have a good week-end all!
nancy-h

Nancy,

There is no need to have balance problems with PN, but you need therapy and practice. I fell and stumbled too about 11 years ago. Work on your balance and it will get better. I did it with Iyengar yoga and constantly practicing which I still do, but any balancing practice will retrain your brain and muscles to move appropriately with your new PN nerve impulses.

See the balance beam suggestion above in the thread and/or try yoga with a good instructor who knows your health challenges. Or get thee to a physical therapist or occupational therapist. Talk with your primary care physician or neurologist to get a referral, and be insistant if you must. Your medical insurance should pay for physical or occupational therapy.

Tripping and stumbling can stop you from getting the healing exercise you need, can cause serious injury, and doesn't help your emotions or self confidence. Please don't just accept that your balance will never be OK. You can turn this around.