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jma66

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Lost a loved one
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Does to much activity (work,sports,driving,etc) known to cause the progression to progress faster? Been diagnosed this month with PLS but like to work. Constant pain but I've been with this pain for a year+ now. They just figured out what it is that I have. I still don't believe I do. Going to NYC Columbia Hospital in Dec. for testing. My dad died with/by ALS though.
Jim
 

Geo

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Aug 24, 2007
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500
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DX UMND/PLS
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12/2001
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Florida
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Ruskin
Jim i would say, Stay active as long as you can and not worry about progression . Once you are no longer to get around or work you'll be glad you stayed active as you can .I have 7+ yrs. in now ,i can't work anymore but do gardening and play Pool once a day ,im using a quad cane,have been for a year -two maybe ,when i get to where im housebound i will at least not regret doing so . I have some "healthy Friends " that their healthy and still do nothing all day . Im not a couch potato and vow not to be . Im finding my knees are getting sore from the muscles in them getting stiff . From the muscles being stiff from lack of Brain stimulation we are suseptible to muscle sprains and muscle tears .They will do an EMG and several MRIs ,NCVs .Is yours in the legs or speech ? Geo
 

JD1992

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Hi Jim,

Moderate exercise will likely do more good than harm. Studies completed in ALS mice show that moderate exercise delays disease progression and extends survival.
 

sharona

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il
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still waiting for answers.

Hi Everyone just thought I'd update on my husband Larry. We have been going through tests now for well over a year. At first the doc thought als but when he did the emg it was normal 2 of them to be exact.Blood tests mri's xray's ct's spinal tap & muscle biopsy all neg. Well we went yesterday to the neuro & he asked if things were different & Larry said YES. He does have a b12 defiency & gets a shot once a month. The dodc said he has all the clinicals for MND.brisk reflexes, babinski, fasiculations.muscle wasting & some atrophy. now he is starting to choke when eating sometimes not all the time & also he forgets to swallow & drools.so now he is going to get a swallow test done.God the not knowing is driving both of us crazy. The doc said see him again in 6 months & then another EMG. He told us that Larry's progression is slow & that is good. Will not rule out PLS or ALS or any other MND.Please keep us in your prayers I pray for all of you on this forum.This is a horrible disease. But we have to be strong. GOD BLESS everyone & have a great day.

When despair knocks on your door,send hope to answer it.
Sharon
 

CindyM

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Hi Jim- I hope it is not PLS or ALS, either. Sharon, thanks for the update. Hope you get answers soon, too. Cindy
 

easy

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Joined
Feb 11, 2008
Messages
9
Reason
DX UMND/PLS
Diagnosis
05/2004
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US
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OK
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Shawnee
Hi Jim- I hope it is not PLS or ALS, either. Sharon, thanks for the update. Hope you get answers soon, too. Cindy
hey jim...exersise will not cause pls/als to progress any faster but, do not do any weight bearing exersise-only range of motion and stretching. i used to do triathalons - so i know how hard it is to give up exersise, but youll find if you lift weights or over exert yourself (as i did when i found out i had it-in a futile attempt to stop the progression) it takes a long time for your muscles to recover. eventually i stopped thai-chi because lifting my arms got exhasting. youll find your recovery time getting longer and longer. eat right and stretch-that will help with the pain.

jim, as far as i know pls/als is not hereditary. its more likely that you and your dad have been exposed to the same environmental substances and you both have a gene that suseptible to it...just a theory (and ive been to 6 neoro's-including columbia als ctr. in nyc...they are great there, but will likely confirm the diagnosis you have. they will do an extensive emg and reflex tests.) the best move i ever made was going to the mda clinic-have your neuro refer you there. they will treat your progression forever...it is progressive but may stop or slow-not so w/ me though. i know you want answers and cures (i neary went to china for stem cell treatment) but try to live it all now. if you have kids talk to them all the time and tell them how much you love them. i cant talk anymore and i wasted a lot of time chasing for answers. im new to this forum and i guess i have more on my mind then i thought. be here now. peace, easy
 

DBowman

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Feb 14, 2007
Messages
74
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DX UMND/PLS
Country
US
State
Virginia
City
Harrisonburg
By all means...MOVE IT!

I believe in staying active and doing whatever you can so your brain can continue to relay to your body HOW to keep doing and moving! I asked my neurologist to write me a presription to go to a physical therapist for a short period of time to learn what were my weakest points(my shoulders, hips, and ankles) and what exercises I could do to maintain and strengthen them at home.( I actually do them at work)!

DBowman
 
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