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Hi . I am so happy to hear from you. It will be great to know others

who are dealing with the same issues. Sara is not ready to communicate with

fellow PLS'ers just yet. She is only 24 and is not convinced yet that she

is going to have to deal with this forever. So that is why I am writing.

She does go to the UCSF clinic in the city & her neurologist is Dr. Ann

Poncelet. Sara is still adjusting to her body that doesn't do what she wants

it to do. When she is ready I know she will want to meet you and everyone

else. I am very interested in the Team Walk in September. Perhaps by then

Sara will agree to join me. The website is great! Please keep me informed

regarding any gatherings. Thanks, Jill

_____

From: PLS-FRIENDS [mailto:PLS-FRIENDS ] On

Behalf Of Lkgentner@...

Sent: Thursday, April 20, 2006 10:19 AM

To: PLS-FRIENDS

Subject: to Jill

Hello, Jill and welcome.

I'm so sorry to hear that your daughter has been diagnosed with PLS; she is

very young. Most of the research indicates that PLS symptoms begin around

50. I am in that category as I was diagnosed at 49 with symptoms beginning

4

years prior to an actual diagnosis -- mild speech symptoms was my beginning

but usually symptoms begin in the legs and move up.

There are several of us on this List who go to the UCSF ALS Center, is that

where Sara goes? My neurologist is Cathy Lomen-Hoerth.

I will be holding our third TeamWalk in Pleasanton on September 16 if you

and Sara would like to meet others of us with PLS. We may be getting

together

for a small " Connection " in the summer, probably in Placerville or in Palo

Alto.

Please read our website as it is a wealth of information.

_www.sp-foundation.org_ (http://www.sp-foundation.org)

This is also an excellent website.

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

and also...click on PLS Data at

_http://als-pls.org/_ (http://als-pls.org/)

Gentner, PLS

Fremont, CA

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Jill,

I am Sue Me and I have HSP and I was diagnosed with that when I was

around 26 or 27--I have been skimming your posts but did the doctors

ever mention anything about HSP? Not sure what you said was all

affected but sure hope you can talk her into going and meeting some

others but she needs to be the one to decide when to talk to others--

she has to be the one to accept this! It takes time especially that

young!

Good luck with everything!

Sue Me

>

> Hi . I am so happy to hear from you. It will be great to

know others

> who are dealing with the same issues. Sara is not ready to

communicate with

> fellow PLS'ers just yet. She is only 24 and is not convinced yet

that she

> is going to have to deal with this forever.

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  • 1 year later...
Guest guest

Jill,

I'm sorry about the state of your marriage. Fibro just makes every damned thing

we go through that much worse. Stress of any kind really messes with us. My

marriage is just weird....it stresses me too. I have been thinking too if there

is something I could do from home...some kind of computer work or billing. I

don't know where to turn either. I guess I have to sit down and do some surfing

this weekend and see what I can find out.

Hugs,

/Mi

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