Re: HSP & PLS stories needed

[Guest guest]

Jackie and Cheryl...This is a noble and very ambitious endeavor and I wish

you both the best of luck and success. I have a suggestion...when asking

for stories, you might want to include a section for the caregivers to

share their sides of the challenge. I'll be glad to contribute, but only

with my wife permission. Doug/St. sburg, FL

" cheryl huskins "

<ihusk888@adelphi To: " HSP-L "

, " PLS-FRIENDS " <PLS-FRIENDS >

a.net> cc:

Subject: HSP & PLS

stories needed

12/02/04 02:48 PM

Please respond to

PLS-FRIENDS

Hello everyone-especially the " newbies " !

A few months ago, Jackie (has HSP, lives in Iowa) and I (have HSP,

live in Maine) decided to work together to gather HSP and PLS stories to

create a book (proposed title: Faces of HSP and PLS...) which will be

published by the Spastic Paraplegia Foundation (with Kathi Geisler's help).

We hope to sell these books to raise funds to pay for research to find

cures for our diseases.

More stories are needed in order to complete the book, and we do

understand that some of you have valid reasons not to share your stories

publicly. However, for those of you who can share your stories, I would

greatly appreciate it if you would write and send your story to either me

(ihusk888@...) or Jackie (Hoppywell@...) before Monday,

December 20th .

Please use the questions below to guide you in writing your story.

After you send your story, please send your picture (not digital) via

" snail mail " to Jackie Wellman at 3012 Elm Street, West DesMoines, IA

50265.

Even if you don't have Word (format necessary for editing), feel free to

send me your documents in other formats (even scanned handwriting or on

cassette tape) and I'll convert them to a usable format and/or type them up

and edit (will send to you for your final edit) for you. If necessary,

I'll give you my " snail " mail address.

Some basic questions for people to answer when telling your story:

1. Introduce yourself and your family members - name, spouse, sibs, kids,

etc., where live

2. Do you have PLS or HSP. If HSP, are there other family members with it?

3. Your story of how your symptoms began - if it's HSP, then did other

family members have problems walking so you were watching for it?

4. Your story of diagnosis - some people have a confusing and long

diagnosis story!

5. About you - do you work? Hobbies? What do you do for fun?

6. What keeps you positive?

7. What treatment helps you the most? Do you use assistive devices?

I look forward to " hearing " from you soon!

Cheryl (HSP in Maine)

[Guest guest]

Hi Cheryl:

Are you interested in stories from people who were first diagnosised with PLS

and then later received an ALS diagnosis? Just thought I would ask. I head to

Hamilton next week to see an ALS Specialist and to have another EMG to confirm

whether the ALS diagnosis I was given in July still stands.

I think the book is a great idea and hope you get a lot of responses.

Jo.

HSP & PLS stories needed

Hello everyone-especially the " newbies " !

A few months ago, Jackie (has HSP, lives in Iowa) and I (have HSP,

live in Maine) decided to work together to gather HSP and PLS stories to create

a book (proposed title: Faces of HSP and PLS...) which will be published by the

Spastic Paraplegia Foundation (with Kathi Geisler's help). We hope to sell

these books to raise funds to pay for research to find cures for our diseases.

More stories are needed in order to complete the book, and we do

understand that some of you have valid reasons not to share your stories

publicly. However, for those of you who can share your stories, I would greatly

appreciate it if you would write and send your story to either me

(ihusk888@...) or Jackie (Hoppywell@...) before Monday, December

20th .

Please use the questions below to guide you in writing your story.

After you send your story, please send your picture (not digital) via " snail

mail " to Jackie Wellman at 3012 Elm Street, West DesMoines, IA 50265.

Even if you don't have Word (format necessary for editing), feel free to send

me your documents in other formats (even scanned handwriting or on cassette

tape) and I'll convert them to a usable format and/or type them up and edit

(will send to you for your final edit) for you. If necessary, I'll give you my

" snail " mail address.

Some basic questions for people to answer when telling your story:

1. Introduce yourself and your family members - name, spouse, sibs, kids,

etc., where live

2. Do you have PLS or HSP. If HSP, are there other family members with it?

3. Your story of how your symptoms began - if it's HSP, then did other family

members have problems walking so you were watching for it?

4. Your story of diagnosis - some people have a confusing and long diagnosis

story!

5. About you - do you work? Hobbies? What do you do for fun?

6. What keeps you positive?

7. What treatment helps you the most? Do you use assistive devices?

I look forward to " hearing " from you soon!

Cheryl (HSP in Maine)

[Guest guest]

I'll be glad to share my story. Do you have a maximum # of words? I

am also a writer/editor and would be happy to help with editing if

you need me.

Edith

> Hello everyone-especially the " newbies " !

>

> A few months ago, Jackie (has HSP, lives in Iowa) and I

(have HSP, live in Maine) decided to work together to gather HSP and

PLS stories to create a book (proposed title: Faces of HSP and

PLS...) which will be published by the Spastic Paraplegia Foundation

(with Kathi Geisler's help). We hope to sell these books to raise

funds to pay for research to find cures for our diseases.

>

> More stories are needed in order to complete the book, and

we do understand that some of you have valid reasons not to share

your stories publicly. However, for those of you who can share your

stories, I would greatly appreciate it if you would write and send

your story to either me (ihusk888@a...) or Jackie (Hoppywell@a...)

before Monday, December 20th .

>

> Please use the questions below to guide you in writing

your story. After you send your story, please send your picture

(not digital) via " snail mail " to Jackie Wellman at 3012 Elm Street,

West DesMoines, IA 50265.

> Even if you don't have Word (format necessary for editing), feel

free to send me your documents in other formats (even scanned

handwriting or on cassette tape) and I'll convert them to a usable

format and/or type them up and edit (will send to you for your final

edit) for you. If necessary, I'll give you my " snail " mail address.

>

> Some basic questions for people to answer when telling your story:

>

> 1. Introduce yourself and your family members - name, spouse,

sibs, kids, etc., where live

>

> 2. Do you have PLS or HSP. If HSP, are there other family members

with it?

>

> 3. Your story of how your symptoms began - if it's HSP, then did

other family members have problems walking so you were watching for

it?

>

> 4. Your story of diagnosis - some people have a confusing and long

diagnosis story!

>

> 5. About you - do you work? Hobbies? What do you do for fun?

>

> 6. What keeps you positive?

>

> 7. What treatment helps you the most? Do you use assistive

devices?

>

> I look forward to " hearing " from you soon!

>

> Cheryl (HSP in Maine)

>

>

>