Re: Does PT help??

[Guest guest]

Hi Pat,

I am convinced that PT makes me worse. I went for one little session last

week and my legs were definitely worse the next day. And there is no getting

better.

My PLS is very progresssing very fast. I have gone from healthy to

wheelchair in 15 months. And there is no fighting it. Some days I am very

bitter.

We wouldn't need this list if we were all cheerful all the time. It is

almost a relief to me when someone " unloads " because I see that I am not the

only one that feels that way.

And we do bounce back! I was really in the depths two days ago. For me the

worst days follow really painful nights.

Jane in Florida

[Guest guest]

Hi Pat,

Thanks for venting your frustrations with us. That is what this group is

here for. You should be able to share your ups and downs with us.

I feel like you do quite often. It is strange because one day I'm on top of

the world and the next I'm ready to throw in the towel!

Thing that keeps me going is the research that all of us, we PLSers, have

made possible. We aren't a bunch to sit back and wait for something to

happen. We make it happen. It is nothing short of amazing what we've been

able to accomplish.

2 PLS newsletters

4-5 PLS websites

2 foundations:

ALS-PLS Research Foundation

SP-Foundation

2 research grants issued to two of the top researchers on PLS

1 additional research grant yet to be issued

12 or so additional neurologists interested in PLS around the world

1 Physician's Guide to PLS, paid for by PLSers, mailed to every neurologist,

hospital library, etc. in US (available to anyone upon request)

1 PLS chapter on eMedicine for physician education

1,210 hits from entering " primary lateral sclerosis " on Yahoo search

(granted some are duplicates links to the same place, but in 1999 you would

get next to nothing) Now:

http://www.ninds.nih.gov/health_and_medical/disorders/primary_lateral_sclero

sis.htm

http://www.emedicine.com/NEURO/topic324.htm

http://www.geocities.com/freyerse/

http://www.clinicaltrials.gov/search/term=Primary+Lateral+Sclerosis

http://www.rarediseases.org/nord/research/pls

http://www.neuro.wustl.edu/neuromuscular/motor.html

http://www.als-pls.org/research.htm

http://www.tandf.co.uk/journals/titles/14660822.html

http://www.bcma.org/BCMJ/September2002/LateralSclerosis.asp

http://www.sp-foundation.org/HSPPLS_Chart.htm

http://www.fpnotebook.com/NEU146.htm

http://pages.yahoo.com/nhp/health___wellness/support/illnesses/amyotrophic_l

ateral_sclerosis__lou_gehrig_s_disease_

http://www.merck.com/pubs/mmanual_home/sec6/70.htm

http://www.merck.com/pubs/mmanual_home/sec6/70.htm

http://www.gpnotebook.co.uk/medwebpage.cfm?ID=-268042240

http://grants.nih.gov/grants/guide/pa-files/PA-93-054.html

http://www.ucsf.edu/brain/als/diagnosis.htm

http://www.clevelandclinic.org/health/health-info/docs/0000/0004.asp?index=4

776

http://hspinfo.org/HSP_PLS_Chart.pdf

http://www.uvm.edu/~jkessler/NP/neurodd.htm#anchor329747

http://www.northwestern.edu/univ-relations/media_relations/releases/october0

1/lou_gehrig.html

http://www.columbiaals.org/staff-publications/hays.html

http://www.neurologyreviews.com/jul02/nr_jul02_entity.html

http://www.scnature.com/nlougerhig.htm

http://www.molbio.princeton.edu/courses/mb427/2001/projects/07/time.html

http://www.wellspouse.org/directory.html

http://www.psychiatry.wustl.edu/Resources/LiteratureList/2001/June/Rowland.p

df

http://www.uwo.ca/anatomy/kiernan.htm

http://www.vh.org/adult/provider/anatomy/MicroscopicAnatomy/Section17/Plate1

7320.html

http://129.194.8.64:9001/cgi-bin/HONselect?browse+C10.668.460#MeSH

http://author.emedicine.com/PMR/topic10.htm

http://www.hatch-ultra.cpmc.columbia.edu/mda.html

http://www.neuroguide.com/neurojour_1.html

http://www.akm.ch/ens2002/teachingCourses/teachingSat.htm

http://home.vicnet.net.au/~mndaust/presentation.html

http://www.mnd-nwlondon.fslife.co.uk/about1.html

http://info.med.yale.edu/neurol/programs/neuromuscular/als.html

http://www.fortunecity.com/meltingpot/sweden/59/id39.htm

http://diff.med.cornell.edu/ulug.html

http://www.advancebenefit.com/critical_illness_definitions.htm

http://www.ataxia.org/generations/2000fall/hspnance.htm

http://intra.ninds.nih.gov/Lab.asp?Org_ID=97

http://www.svpproductions.com/page5.html

http://www.pharmj.com/pdf/education/pj_20011110_motor1.pdf

Just a few of the hits.

But the most exciting thing that is coming:

1 PLS Symposium.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

Does PT help??

> I've seen so many reference about PT. I tried this after my diognosis

> in 1999. I went for three months and felt no improvement. I was just

> physically exausted after each session. So, I stopped going. I must

> be having a bad day, because I feel like I've given up. Maybe what

> I've thought was acceptance was really jusr giving up. My PLS has

> progressed so fast!! Maybe I'm just giving in. So many of you seem to

> have so much fight in you!! I have never had any thing in my life

> that I couldn't atleast fight back alittle.This disease just keeps

> taking more and more from me. At times I,m just bitter. It would be

> some better if we had a disease that was understood more by others

> and even by the Doctor,s. I'm sorry I've unloaded on you!! Maybe I

> will have a better day tomorrow. This is not like me. I'm usually so

> positive and focused. Thanks for listening!!! Love, PAT in N.C.

>

>

>

>

>

[Guest guest]

HI PAT,

DON RECEIVED PT. WHEN FIRST DX WITH PLS HE USED AQUATICS THERAPY FIRST WITH A

PT THEN I TOOK OVER THE PROGRAM AND WE WENT 3X'S A WEEK IT WAS EASY THERAPY AND

VERY HELPFUL.

WE QUIT ONLY BECAUSE THE THERAPY POOL WAS WHERE I WORKED AND I WAS HAVING

PROBLEMS WITH MY BOSS WHO WAS ALSO IN CHARGE OF THE POOL. (THAT IS A LONG STORY

BUT I AM NO LONGER EMPLOYED AND AM FIGHTING THEM FOR MY UNEMPLOYMENT)

ANY WAYS - LATER AFTER THE CHANGE IN DX TO ALS AND LOSS OF RULITECK DUE TO THE

LOSS OF MY INSURANCE. DON WAS GETTING SO STIFF THAT HE AGAIN NEEDED PT. HE

HAD STRETCHING EXERCISES ONLY WITH RANGE OF MOTION. THIS FOR 6 WEEKS. HE NOW

HAS RANGE OF MOTION DAILY PERFORMED BY HIS NURSING ASSISTANT (AN ORDERLY WITH

MUCH STRENGTH AND MANY YEARS OF EXPERIENCE. ) DON IS AGAIN ABLE TO WALK WITH

ASSISTANCE FROM THE LIVING ROOM TO THE BATH ROOM. WITH OUT RANGE OF MOTION WITH

STRETCHES I KNOW HE WOULD NO LONGER BE ABLE TO WALK. IF YOU CAN GET INTO A

HEATED THERAPY POOL WOULD PROBABLY BE THE BEST FOR YOU. LESS STRESS.

BY THE WAY - TO LET YOU ALL KNOW - DON HAS FINALLY GOTTEN CLEARANCE FROM

MEDICAID FOR HIS RILUTECK. HE HAS BEEN ON IT FOR ABOUT A WEEK NOW.

LOVE

BONNIE

[Guest guest]

Wonderful news about Don't Rilutek situation! And the PT sounds great. Our

plumber gave us a really nice whirlpool bath for our new bathroom, so that

should be really good for . We will be talking with the PT folks at the

Carolinas and getting advice from them in January. I will be sure to pass along

anything that I can!

Peace and may all be auspicious,

Ohm Ma Ni Pad Me Hum

" May all beings have freedom from suffering and the causes of suffering "

[Guest guest]

Pat

Read your email of 12/16 regarding PT. I do not know how advanced the

disease is in your case. Can you still walk and/or use your legs in limited

ways? Can you peddle a stationary bike? I went to PT for sometime and got

only brief relief from spasticity, joint pain etc. However, PT did not seem

agressive enough to allow a sustained period of relief. My day now consists

of 40-60 minutes on the stationary bike and another hour of light to moderate

resistance excercises. I have very little balance so free weights will not

work for me. I pick up a weight and fall over, so I use machines at the gym

where I work out. This is my own form of PT. After my routine I feel

exceptionally good for 3-6 hours. I believe this routine helps blood flow,

stretches tendons and ligaments, gives me a feeling of accomplishment and

MOST OF ALL starts the flow of endorphens that seems to perpetuate a euphoric

state of mind. Although I still have balance problems and spasticity I

function much better. I am not a physician or even an exercise physiologist

so I can't claim this to be valid for everyone, but it works for me. I have

two aquaintances who have MS. One can still walk and the other uses a

wheelchair and both of them agree with me. They both say that the feel best

just after a workout. It is my understanding that brief, or passive

exercising (such as PT) will not bring your body to the stage of producing

the endorphen effect, so it requires more of an effort on the part of the

person. Within 30 min to one hour after I complete my workout I eat protein

and consume a moderate amount of carbohydrate. This helps build the muscle

back that you've " torn " down during workout and the carbs restore energy. If

you wait too long after the work out to consume the proper nutrition you may

miss the window of opportunity for proper assimilation of the needed

nutrients which, typically results in fatigue. I would suggest that you

visit with your physician before attempting a work out schedule and, like

anything else, start slow and work into the physical activity in phases.

This is where it is discouraging, because you will not feel the effects of

the endorphens until you can regularly bring your heart rate up substantially

and sustain the rapid heart rate for more than 40 minutes. AGAIN, check with

your doc before trying this.

Marvin Wiebener