Re: Just Found This Group -- Hooray!

[Guest guest]

,

You just found this group? Wow! Did you just get computer access? I

was lucky enough to find it through Beth Israel Hospital in New York. I

had been trying for months to get information about PLS and could only

find abstracts of articles that used only one to eight subjects for their

research. Not good enough for me. A nurse responded to my question about

PLS by stating that it was a very rare disease and not much was known about

it. She then stated that they had a website and a news group. The website

was Reyerse's and the news group was PLS-PALS, I think. It was then

on Excite. Mark Weber had started it and still maintains it. I got to know

Joe Alberstadt throught the Synapse Newsletter, which Mark has now taken

over. (He's probably found out it takes a lot of time.) I was greatly relieved

to find the group and have been hanging around now for about two years.

I was diagnosed in May 96. One and one half years after first being hospitalized.

I was 46 when the symptoms were first really noticed and 48 when diagnosed.

I'm now 53. This seem to be my life style and seems like it has been forever

now.

The group is a great one. Feel free to ask any questions. Someone will

have an answer. Thomson can give you her website with links to

's and other links.(Hint. Hint. .) I can't do the fancy thing

with putting the link in my emails yet. Haven't figured that one out.

Welcome to a great group. Don't bother with the controversies that occasionally

crop up. We all have our opinions and express them. Perhaps it's because

we all hate this little thing that has come into our lives and created

some havoc and loss of functions that we really miss. You will discover

that many of us are in different stages of progression and some of us are

stable. We're the lucky ones.

Keep in touch. We will.

Mike Gray Logansport IN

spoage@... wrote:

I was dx in June 1967 as a PLS person. Six month

later the neuro-

changed that to ALS. It was scary thing. 8 months later they reversed

that dx back to PLS. That dx has remainded constant since then.

Two

other neuro-s have since confirmed that.

While I am geatly relived to by the non-fatal bit; my life style

has

had drastic change. I can walk about 50 feet with a cane. I have

moved to a power chair for most purposes. The indoor-outdoor carpets

are too tough for a manual chair. I just ordered a ramp van ( bright

RED Ford Windstar)

I am 70 years old and am handing my emotional problems fairly well.

I guess after the lifting of the ALS dx made me so grateful to

God,

that all else seem greedy.

Lets all hope for the sucess of the stem cell research.

T. Poage

[Guest guest]

,

I just thought of something else. Now you are the one who has been diagnoses

longer than anyone else. Rita used to have that distinction, but now she

will have to settle for second. Hope you're doing well after 34 years with

this crappy disease.

Mike Gray Logansport IN

spoage@... wrote:

I was dx in June 1967 as a PLS person. Six month

later the neuro-

changed that to ALS. It was scary thing. 8 months later they reversed

that dx back to PLS. That dx has remainded constant since then.

Two

other neuro-s have since confirmed that.

While I am geatly relived to by the non-fatal bit; my life style

has

had drastic change. I can walk about 50 feet with a cane. I have

moved to a power chair for most purposes. The indoor-outdoor carpets

are too tough for a manual chair. I just ordered a ramp van ( bright

RED Ford Windstar)

I am 70 years old and am handing my emotional problems fairly well.

I guess after the lifting of the ALS dx made me so grateful to

God,

that all else seem greedy.

Lets all hope for the sucess of the stem cell research.

T. Poage

[Guest guest]

Welcome ,

Sorry you have the PLS, but thank God it is PLS,

and not ALS.

You'll find a nice bunch of supportive, kind, informative,

and friendly people in this group.

I was diagnosed 2 years ago with PLS, and am still

pretty mobile.

Take care, and ask away if you have any questions. There's usually someone

here with an answer or suggestion.

Hugs.....

Laurel

Just Found This Group -- Hooray!

> I was dx in June 1967 as a PLS person. Six month later the neuro-

> changed that to ALS. It was scary thing. 8 months later they reversed

> that dx back to PLS. That dx has remainded constant since then. Two

> other neuro-s have since confirmed that.

>

> While I am geatly relived to by the non-fatal bit; my life style has

> had drastic change. I can walk about 50 feet with a cane. I have

> moved to a power chair for most purposes. The indoor-outdoor carpets

> are too tough for a manual chair. I just ordered a ramp van ( bright

> RED Ford Windstar)

>

> I am 70 years old and am handing my emotional problems fairly well.

> I guess after the lifting of the ALS dx made me so grateful to God,

> that all else seem greedy.

>

> Lets all hope for the sucess of the stem cell research.

>

> T. Poage

>

>

>

>

>

>

[Guest guest]

Hi ,

Welcome to the group. We'd like to hear more about

you. You can read more about some of us at:

www.geocities.com/mdmfoo/data.html I'd love to have

you submit your information, along with anyone else

out there that hasn't already done so. We have 22

participants so far.

Here are some other links you might be interested in.

www.geocities.com/freyerse/index.html (website by

Reyerse)

www.geocities.com/mdmfoo/pls.html (website created by

me to promote research)

http://www.emedicine.com/NEURO/topic324.htm (PLS paper

written by my neuro, Dr. Carmel Armon)

--- spoage@... wrote:

> I was dx in June 1967 as a PLS person. Six month

> later the neuro-

> changed that to ALS. It was scary thing. 8 months

> later they reversed

> that dx back to PLS. That dx has remainded constant

> since then. Two

> other neuro-s have since confirmed that.

>

> While I am geatly relived to by the non-fatal bit;

> my life style has

> had drastic change. I can walk about 50 feet with a

> cane. I have

> moved to a power chair for most purposes. The

> indoor-outdoor carpets

> are too tough for a manual chair. I just ordered a

> ramp van ( bright

> RED Ford Windstar)

>

> I am 70 years old and am handing my emotional

> problems fairly well.

> I guess after the lifting of the ALS dx made me so

> grateful to God,

> that all else seem greedy.

>

> Lets all hope for the sucess of the stem cell

> research.

>

> T. Poage

>

>

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

Hi Mike:

Second Best! Oh well, let me tell you and this distinguished group what

I did yesterday, and I will be #1 again. My whole family went to Six

Flags Amusement Park for the day. They have a roller coaster named " The

Superman " . It is suppose to be one of the largest and fastest coaster's

in the USA! Well, I loved coaster's when I was a kid and was itching to

try this one. So I decided I was going to go for it!!! They could not

believe it. So with 6 of my grandkids behind me, I climbed aboard

" Superman " and off I went. They cheered me when I got off. It was

really a thrill. I told everybody even though I am 65, I ain't dead!!

I guess my poor husband was a basket case, and my daughter and her

husband (who would not go on) could not believe I did it. My daughter

kept saying " Mom, your unbelievable " . Would I do it again?? Not on your

life!!!!

Rita

Luv & Hugs!

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

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

of them.

[Guest guest]

,

That first reference to " data " , yields a dead end. It says " whoops, can't

find this page " .

Dolores

Re: Just Found This Group -- Hooray!

> Hi ,

> Welcome to the group. We'd like to hear more about

> you. You can read more about some of us at:

> www.geocities.com/mdmfoo/data.html I'd love to have

> you submit your information, along with anyone else

> out there that hasn't already done so. We have 22

> participants so far.

> Here are some other links you might be interested in.

> www.geocities.com/freyerse/index.html (website by

> Reyerse)

> www.geocities.com/mdmfoo/pls.html (website created by

> me to promote research)

> http://www.emedicine.com/NEURO/topic324.htm (PLS paper

> written by my neuro, Dr. Carmel Armon)

>

> --- spoage@... wrote:

> > I was dx in June 1967 as a PLS person. Six month

> > later the neuro-

> > changed that to ALS. It was scary thing. 8 months

> > later they reversed

> > that dx back to PLS. That dx has remainded constant

> > since then. Two

> > other neuro-s have since confirmed that.

> >

> > While I am geatly relived to by the non-fatal bit;

> > my life style has

> > had drastic change. I can walk about 50 feet with a

> > cane. I have

> > moved to a power chair for most purposes. The

> > indoor-outdoor carpets

> > are too tough for a manual chair. I just ordered a

> > ramp van ( bright

> > RED Ford Windstar)

> >

> > I am 70 years old and am handing my emotional

> > problems fairly well.

> > I guess after the lifting of the ALS dx made me so

> > grateful to God,

> > that all else seem greedy.

> >

> > Lets all hope for the sucess of the stem cell

> > research.

> >

> > T. Poage

> >

> >

>

>

> =====

> Thomson, Solana Beach, CA

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

>

> __________________________________________________

>

[Guest guest]

Rita,

I would never have done betting on your life or anyone else's. Roller

coasters are bad for me. Too many auto accidents with resulting neck problems.

I did ride the "Beast" at King's Island when it was considered one of the

top 5 in the world. My then 10 yr. old son talked me into standing in line

for over an hour and going with him. It was a 90 second ride, one which

I will never forget. My memory will keep me from ever doing anything like

that again. He also rode a new twisting coaster at burg, VA. It

turned him upside down several times. He rode it twice and loved it. He's

almost 31 now and has tamed down some, but not much. He has done bungee

jumping, which I witnessed but was not certain it was him until we talked

later. He has also ridden a motorcycle he owned at its top speed of 180

mph. I do believe he is a thrill seeker. If he would really like some thrills,

he should get married. No one can tie him down and he won't make a commitment.

Although the last time I talked with him, he was beginning to reconsider

- IF HE COULD FIND THE RIGHT PERSON. Ha! He's a perfectionist and an excellent

housekeeper. If someone doesn't meet his standards, he will date them for

a little while, but not commit to them. He needs to lower his standards

to something more realistic. He would be much happier.

Well, you got more than you bargained for. His older sister is getting

married at the end of this month and his younger brother is getting married

in June. Both of these just came up in the past 2 months. Adam, who is

ten, is not allowed to date until he's 35. He's beginning to give us some

trouble with this now.

Keep young anyway you can. If you don't get enough exercise, you will

get old and stiff and won't smile anymore. (Running in circles and jumping

to conclusions don't count.)

Mike

ritadfromhollis@... wrote:

Hi Mike:

Second Best! Oh well, let me tell you and this distinguished

group what

I did yesterday, and I will be #1 again. My whole family went to

Six

Flags Amusement Park for the day. They have a roller coaster

named "The

Superman". It is suppose to be one of the largest and fastest coaster's

in the USA! Well, I loved coaster's when I was a kid and was itching

to

try this one. So I decided I was going to go for it!!!

They could not

believe it. So with 6 of my grandkids behind me, I climbed

aboard

"Superman" and off I went. They cheered me when I got off.

It was

really a thrill. I told everybody even though I am 65, I

ain't dead!!

I guess my poor husband was a basket case, and my daughter and

her

husband (who would not go on) could not believe I did it.

My daughter

kept saying "Mom, your unbelievable". Would I do it again??

Not on your

life!!!!

Rita

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed

because

of them.

[Guest guest]

Dolores,

Thanks for letting me know. The link is actually with

a capital " D " , sorry about that!

www.geocities.com/mdmfoo/Data.html

When the site was set up it didn't matter about caps,

but they changed it so that now it does. I keep

forgetting! Someday I'll have to fix that.

--- Dolores Carron wrote:

> ,

>

> That first reference to " data " , yields a dead end.

> It says " whoops, can't

> find this page " .

>

> Dolores

> Re: Just Found This Group --

> Hooray!

>

>

> > Hi ,

> > Welcome to the group. We'd like to hear more

> about

> > you. You can read more about some of us at:

> > www.geocities.com/mdmfoo/data.html I'd love to

> have

> > you submit your information, along with anyone

> else

> > out there that hasn't already done so. We have 22

> > participants so far.

> > Here are some other links you might be interested

> in.

> > www.geocities.com/freyerse/index.html (website by

> > Reyerse)

> > www.geocities.com/mdmfoo/pls.html (website created

> by

> > me to promote research)

> > http://www.emedicine.com/NEURO/topic324.htm (PLS

> paper

> > written by my neuro, Dr. Carmel Armon)

> >

> > --- spoage@... wrote:

> > > I was dx in June 1967 as a PLS person. Six month

> > > later the neuro-

> > > changed that to ALS. It was scary thing. 8

> months

> > > later they reversed

> > > that dx back to PLS. That dx has remainded

> constant

> > > since then. Two

> > > other neuro-s have since confirmed that.

> > >

> > > While I am geatly relived to by the non-fatal

> bit;

> > > my life style has

> > > had drastic change. I can walk about 50 feet

> with a

> > > cane. I have

> > > moved to a power chair for most purposes. The

> > > indoor-outdoor carpets

> > > are too tough for a manual chair. I just ordered

> a

> > > ramp van ( bright

> > > RED Ford Windstar)

> > >

> > > I am 70 years old and am handing my emotional

> > > problems fairly well.

> > > I guess after the lifting of the ALS dx made me

> so

> > > grateful to God,

> > > that all else seem greedy.

> > >

> > > Lets all hope for the sucess of the stem cell

> > > research.

> > >

> > > T. Poage

> > >

> > >

> >

> >

> > =====

> > Thomson, Solana Beach, CA

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

> >

> > __________________________________________________

> >