TO PATTI & PHIL -- WELCOME

[Guest guest]

Patti,

You did come in on a peculiar posting so, I'll give you a little background

on myself at your direct e-mail address. (The PLSers have all heard it

before and, I'm sure, don't want to hear it again.) Please feel free to ask

questions and chat on PLS-FRIENDS as much as you want. We all know it's so

important to find other people with this disease who know what you are going

through -- just to even find someone who knows that PLS stands for.

One thing I will suggest is that you go to the PLS website

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

and you will find out all kinds of information.

To find others who live close to you, check out the PLS data base

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

and if would be great if you included Phil's info in the data base.

To read some of other PLSer's stories (data), go to

http://www.geocities.com/mdmfoo/PLS.html

Some people refer to PLS-FRIENDS as a chat room, although, it really

isn't--we're a support group. You can set up a chat room yourself but you

have

to let others know when you want to " meet " .

Our PLS-Friends group, through NORD (National Organization of Rare

Diseases) just awarded two PLS research grants and one of the

researchers is Dr. Fink, from the U. of Michigan. He is an expert

on PLS and HSP.

You've probably now read about SPF, which is our combined foundation and you

can check it out at www.sp-foundation.org

Just a note on HSP and PLS. They are both upper motor neuron diseases.

PLS is sporadic (not hereditary) and HSP is hereditary. PLSers, we limp

and HSPers wobble, I guess. :-)

Again, welcome.

Gentner

Fremont, CA

[Guest guest]

,

Thanks for the welcome...my husband was just diagnosed January 3, but I

suspect this has been going on for some time...Dr. Fink IS our doctor at

the U of M...Thank you for that information and we will try to get situated

in the data base...we are participating in a group clinic at U of M run by

Anne Marie Schoenaman and we see 5-7 people in one day...yesterday while we

were there they kept referring to ALS...while we know the simularities and

such we are more interested in how the folks with PLS are coping and any info

on what to think about as far as the future etc...again..thanks for the

welcome..the number of responses is tremendous...doesn't feel so lonely

now...xoxox Patti

[Guest guest]

Patti,

I know how that is. I go to the UCSF ALS Research Center and I think there

are only about 8 or so with PLS. At UCSF, they consider PLS a variant of

ALS. I go back every 6 months and see the entire ALS team and finally last

visit I told them that I realized that ALS people needed to monitored more

closely but I didn't think I needed to see the entire staff every 6 months.

And, thankfully, the head neuro agreed. She wants to repeat the EMG once a

year to just to keep on top of things and I do appreciate that. I'm so

active in PLS awareness that now the staff at the UCSF ALS Research center

refers new PLS patients to me for support information!!

[Guest guest]

Patti,

I know how that is. I go to the UCSF ALS Research Center and I think there

are only about 8 or so with PLS. At UCSF, they consider PLS a variant of

ALS. I go back every 6 months and see the entire ALS team and finally last

visit I told them that I realized that ALS people needed to monitored more

closely but I didn't think I needed to see the entire staff every 6 months.

And, thankfully, the head neuro agreed. She wants to repeat the EMG once a

year to just to keep on top of things and I do appreciate that. I'm so

active in PLS awareness that now the staff at the UCSF ALS Research center

refers new PLS patients to me for support information!!

[Guest guest]

Patti,

I know how that is. I go to the UCSF ALS Research Center and I think there

are only about 8 or so with PLS. At UCSF, they consider PLS a variant of

ALS. I go back every 6 months and see the entire ALS team and finally last

visit I told them that I realized that ALS people needed to monitored more

closely but I didn't think I needed to see the entire staff every 6 months.

And, thankfully, the head neuro agreed. She wants to repeat the EMG once a

year to just to keep on top of things and I do appreciate that. I'm so

active in PLS awareness that now the staff at the UCSF ALS Research center

refers new PLS patients to me for support information!!

[Guest guest]

Hi Patti again Dr. Fink is also my husbands doctor. Hope to hear from you

soon. Thanks Shirley(Michigan)

[Guest guest]

Hi Patti again Dr. Fink is also my husbands doctor. Hope to hear from you

soon. Thanks Shirley(Michigan)

[Guest guest]

Hi Patti again Dr. Fink is also my husbands doctor. Hope to hear from you

soon. Thanks Shirley(Michigan)

[Guest guest]

I guess the reason you keep hearing about ALS is that it is 100 times more

common. From my reading the majority of neurologists out there see PLS as

an ALS variant with a similar cause (glutamate excess) but with only upper

motor involvement rather than both upper and lower. Here in San

PLS patients are seen in an ALS clinic setting so I know the " odd man out

feeling " ! What type of symptoms does your husband have? I have a spastic

quadraparesis and, when I am tired, slightly slowed speech (my neurologist

says I'll just sound like I have a more local drawl for a while). I was

diagnosed in November 1999 and guess my progression is kind of moderate-

will need a power chair most of the time by next year I suspect. Anyway

most of us here are PLSers and this is the place to come to be one of the

crowd! Welcome. Lavon

At 05:13 PM 07/12/2002 -0400, you wrote:

>,

>Thanks for the welcome...my husband was just diagnosed January 3, but I

>suspect this has been going on for some time...Dr. Fink IS our doctor at

>the U of M...Thank you for that information and we will try to get situated

>in the data base...we are participating in a group clinic at U of M run by

>Anne Marie Schoenaman and we see 5-7 people in one day...yesterday while we

>were there they kept referring to ALS...while we know the simularities and

>such we are more interested in how the folks with PLS are coping and any info

>on what to think about as far as the future etc...again..thanks for the

>welcome..the number of responses is tremendous...doesn't feel so lonely

>now...xoxox Patti