Re: New to PLS

[Guest guest]

Hi Dennis,

Welcome to PLS Friends. Usually the first thing I recommend is that a new

person check the PLS Database (_http://www.geocities.com/freyerse/plsdb.html_

(http://www.geocities.com/freyerse/plsdb.html) ) but I notice that you are

already listed...good for you.

The second thing I suggest is check our website (_www.sp-foundation.org_

(http://www.sp-foundation.org) ) for all kinds of information and up-coming

events. Third, another great resource is the Synapse Newsletter

_http://www.synapsepls.org/_ (http://www.synapsepls.org/)

My brother-in-law is an architect in Huntsville (he and my sister live over

the boarder in Tennessee) and my husband and I were just there visiting them

recently. Darn,

wish I would have known and perhaps we could have gotten together. There's

nothing better than meeting another person who understands what you're going

through.

Any questions or concerns you may have, don't hesitate to ask.

Gentner

Fremont, CA

Alone we can do so little. Together we can do so much.

Helen Keller (1880-1968)

[Guest guest]

Welcome to our wonderful family Dennis,

I too was diagnosed this last year.

You will find a great deal of support here. I have only met 1 PLS friend in

person, but I feel I know everyone personally.

You mentioned your wife has cancer, my husband had a massive stroke 2 years ago

at the age of 45. This great group of people will help you with the support you

need to deal with your wife too. There are times when you just need a shoulder

to cry on.

I have found so much info from this group. Our doctors are wonderful, but they

really dont know too much when it comes to this disease.

I too am on Baclofen at 70mg a day, Provigil to help me threw the day, Neurotin

to help out more with the spastisity and Trazadone to help me sleep.

You mentioned that you are having troubles at work, have you checked into

possibly going on Social Security?

Please feel free to ask any questions, or just ask for a shoulder to lean on.

Hope to see you post again. Sandy in Oregon

New to PLS

I am a new member of this group. I live in Huntsville alabama and I

have been trying to get information and have not gotten much or I

guess what I am looking for. My doctor told me I had PLS November of

2003. I had the symptoms of my left leg giving out during a walk or

when I worked in the yard for more than an hour. My family doctor had

me take a MRI and said I had a bulge at L4 L5 and sent me to a

Neurologist. That was in 2001. I hope I am typeing ok as my left hand

goes out from time to time.

I work as an Instructor for a electronics manufacturing company and I

am able to do my job. It is harder to solder and show students what

to do so I use more pictures. I have to type a lot and find it harder

as the day goes on. I touch the walls at work when I walk and have

not fallen yet. I do use a cane if I have to walk any distance and

when I go shopping. when I work out side I work for about 20 minutes

than sit for 15. I do this until I am not ableto go on which is about

2 hours.

I am on 10 mg of Baclofen 3 times a day and was woundering if

vitamins would help. My wife has cancer so I try to keep my spirits

up but that is getting hard. My church has helped alot.

so if you can give me any info please do. My e mail is

dsweet3301@.... I guess I rambled for long enough. thanks for

reading this and any help you can give.

[Guest guest]

Dennis, welcome to the group. I take vitamins but how can you tell

if they work? I mean they say there is no cure and no way to slow

the progression so do the vitamins make a difference? I don't know

but I like to think that they are keeping me as healthy as possible

in all other respects so that I can do as much as I can. I also

drink a whey protein powder every day for added protein because I

don't have much of an appetite and don't eat much meat. I like to

think that I am doing the right thing and that it is helping.

Susieq in No Calif.

> I am a new member of this group. I live in Huntsville alabama and I

> have been trying to get information and have not gotten much or I

> guess what I am looking for. My doctor told me I had PLS November

of

> 2003. I had the symptoms of my left leg giving out during a walk or

> when I worked in the yard for more than an hour. My family doctor

had

> me take a MRI and said I had a bulge at L4 L5 and sent me to a

> Neurologist. That was in 2001. I hope I am typeing ok as my left

hand

> goes out from time to time.

>

> I work as an Instructor for a electronics manufacturing company and

I

> am able to do my job. It is harder to solder and show students what

> to do so I use more pictures. I have to type a lot and find it

harder

> as the day goes on. I touch the walls at work when I walk and have

> not fallen yet. I do use a cane if I have to walk any distance and

> when I go shopping. when I work out side I work for about 20

minutes

> than sit for 15. I do this until I am not ableto go on which is

about

> 2 hours.

>

> I am on 10 mg of Baclofen 3 times a day and was woundering if

> vitamins would help. My wife has cancer so I try to keep my spirits

> up but that is getting hard. My church has helped alot.

>

> so if you can give me any info please do. My e mail is

> dsweet3301@a... I guess I rambled for long enough. thanks for

> reading this and any help you can give.

[Guest guest]

Galen:

Did you ever think of running for president, you got my vote. Your sure

something (ooops) somebody special.

Rita

Love & Hugs

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

I've just gotta save this for future reference - another Galen classic!

:-)

As an additional rider on #1 methinks it could say " if you can find a

vacant one - not being used by a car with no permit " ??

In #2 did you mean walking or talking? Sorry to be pernickety on such a

fine piece of humour (or humor to all you Americans). :-)

Galen Hekhuis wrote:

> ............

>

> 1. You may qualify for a special .....

>

> 2. You can have two disabilities .....

>

> 3. You may get a chair with ......

>

> 4. Each and every day is .......

>

> 5. There is no handbook .......

>

> Galen Hekhuis NpD, JFR, GWA ghekhuis@...

> We are the CroMagnon of the future

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

Hi Dennis

Welcome. All of us are searching for information on our rare

neurological issue. We are basically learning as we go I guess. My

official Dx is 'probable ALS' but I've been carrying that around for

5 years now.

Sounds like you guys have your hands full emotionally, you with PLS

and your wife with cancer. May God Bless you and keep you strong.

I was told at Cleveland Clinic to take a multiple vitamin as well as

1000 mg Vit C, 1200 Vit E, and 300 CoQ10 daily. I also am required

to take 5 gms of creatine daily. My Rx's include Celebrex and

Zanaflex as well. Total I pop 27 pills down my throat daily.

Hey what ever it takes to keep walking, talking, and breathing.

Eva in WV

Finding a way every day.

[Guest guest]

Hi Dennis,

Kinda late with a reply but here goes:

My neuro has me on 1200 mgs of COq10 and 1200 of vitamin E. Also

creatine. I seem to be stronger on these. Have taken them for a yr.

I am also on baclofen and add .25 of klonopin with it in the a.m. to

kinda jump start me. (the good Lord knows something need to jump-start

me).

Glad to have you aboard but sorry you have to be.

Arlene in Texas