Re: New Guy

[Guest guest]

Welcome aboard mate,

, no invitation is needed to get into this group but be warned some of

us are characters if you already haven't noticed. We come in all shapes and

sizes and in different stages with this @!## disease. Ask any question, we

are open to any discussion so ask away. I will e-mail you direct and tell

you my story so I don't repeat myself to the others. Sorry that you have to

join our group in the first place..............

Flora Brand

St Pete, FL

[Guest guest]

Welcome aboard mate,

, no invitation is needed to get into this group but be warned some of

us are characters if you already haven't noticed. We come in all shapes and

sizes and in different stages with this @!## disease. Ask any question, we

are open to any discussion so ask away. I will e-mail you direct and tell

you my story so I don't repeat myself to the others. Sorry that you have to

join our group in the first place..............

Flora Brand

St Pete, FL

[Guest guest]

Very nice to " meet " you ! Welcome to the group. I'm new here as well. My

name is . I'm 35, and my husband is 34. He has ALS according to

two neurologists and PLS according to one. I'm pretty sure that every new one

will have a new idea of what he has, so we are stickin with the one we like the

best (though we dislike her ALS diagnosis).

still works full time. He's a professional geek. And no, it doesn't

annoy him that that is what I tell people he does. My uncle finally gave up and

said works for the CIA because it's easier to explain than his real job!

Actually, is the systems administrator and chief security officer of

the third largest remote data entry company in the world. You'll never guess

what data they collect...CLINICAL TRIALS!!!!! They have such high profile

clients as Glaxo--Klein, Forrest, and & .

I am a frustrated Wildlife Biologist who was unable to find work in her field

(common story I'm told now), and am now a pharmacy technician for Walgreens. I

guess I was destined for retail even though I hate working with the public...go

figure! HA!

I'm on FMLA right now as both folks are also sick, and am enjoying being home

IMMENSELY. After T'giving I'll be back at work though, so I'm trying to enjoy

this as much as I can.

Well, that's enough for me I suppose. Since you were a career military man, I

might amuse you in telling you that I once seriously considered a military

career for myself. I wanted to be a sniper....sorry.....sharpshooter. Since my

religious views took a bit of a turn later, it turned out to be a good thing I'm

not. I'm Buddhist! LOL. Imagine me getting someone in my sights after 3 days of

lying completely stock still in a bush and thinking " Now, is this the

COMPASSIONATE thing to do??? "

Anyway, I've rambled enough. It's nice to meet you!

Peace and may all be auspicious,

Ohm Ma Ni Pad Me Hum

" May all beings have freedom from suffering and the causes of suffering

New Guy

Hey Gang!

I am another new guy on the block. My symptoms started in early '96 and

I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center. If

there is a good side to this disease, it's that my progression has been very

slow.

PLS forced me to retire in Feb 2001 from the Navy after 25 years of

service. Now I am (still) trying to adapt to my new lifestyle. My speech

is somewhat slurred, my arms and legs have weakened, I have some world class

twitching going on, my falls would qualify me for entry in the WWF, but I

have no evidence of any muscle atrophy and my EMGs were clean.

I still get around pretty good with a cane as long as I take it easy

(especially negotiating stairs). Being a die-hard OCB (Old Crippled Biker),

I have rigged my Harley with a side car (my legs could no longer hold a bike

up) and a neat little mechanism to assist my poor ole hands with operating

the clutch.

Of all the decisions I made in my life, the best one is that I married a

pretty lady 25 years ago that is smarter than me, and a Registered Nurse!

How's that for home health care!

Learning that there are others out there through the " PLS-FRIENDS " has

done a lot to improve my outlook. If invited would be proud to be part of

your group!

Later,

[Guest guest]

Very nice to " meet " you ! Welcome to the group. I'm new here as well. My

name is . I'm 35, and my husband is 34. He has ALS according to

two neurologists and PLS according to one. I'm pretty sure that every new one

will have a new idea of what he has, so we are stickin with the one we like the

best (though we dislike her ALS diagnosis).

still works full time. He's a professional geek. And no, it doesn't

annoy him that that is what I tell people he does. My uncle finally gave up and

said works for the CIA because it's easier to explain than his real job!

Actually, is the systems administrator and chief security officer of

the third largest remote data entry company in the world. You'll never guess

what data they collect...CLINICAL TRIALS!!!!! They have such high profile

clients as Glaxo--Klein, Forrest, and & .

I am a frustrated Wildlife Biologist who was unable to find work in her field

(common story I'm told now), and am now a pharmacy technician for Walgreens. I

guess I was destined for retail even though I hate working with the public...go

figure! HA!

I'm on FMLA right now as both folks are also sick, and am enjoying being home

IMMENSELY. After T'giving I'll be back at work though, so I'm trying to enjoy

this as much as I can.

Well, that's enough for me I suppose. Since you were a career military man, I

might amuse you in telling you that I once seriously considered a military

career for myself. I wanted to be a sniper....sorry.....sharpshooter. Since my

religious views took a bit of a turn later, it turned out to be a good thing I'm

not. I'm Buddhist! LOL. Imagine me getting someone in my sights after 3 days of

lying completely stock still in a bush and thinking " Now, is this the

COMPASSIONATE thing to do??? "

Anyway, I've rambled enough. It's nice to meet you!

Peace and may all be auspicious,

Ohm Ma Ni Pad Me Hum

" May all beings have freedom from suffering and the causes of suffering

New Guy

Hey Gang!

I am another new guy on the block. My symptoms started in early '96 and

I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center. If

there is a good side to this disease, it's that my progression has been very

slow.

PLS forced me to retire in Feb 2001 from the Navy after 25 years of

service. Now I am (still) trying to adapt to my new lifestyle. My speech

is somewhat slurred, my arms and legs have weakened, I have some world class

twitching going on, my falls would qualify me for entry in the WWF, but I

have no evidence of any muscle atrophy and my EMGs were clean.

I still get around pretty good with a cane as long as I take it easy

(especially negotiating stairs). Being a die-hard OCB (Old Crippled Biker),

I have rigged my Harley with a side car (my legs could no longer hold a bike

up) and a neat little mechanism to assist my poor ole hands with operating

the clutch.

Of all the decisions I made in my life, the best one is that I married a

pretty lady 25 years ago that is smarter than me, and a Registered Nurse!

How's that for home health care!

Learning that there are others out there through the " PLS-FRIENDS " has

done a lot to improve my outlook. If invited would be proud to be part of

your group!

Later,

[Guest guest]

Welcome very nice to meet you. Shirley (Michigan)

[Guest guest]

You indeed are lucky! How long have you been married to this nurse?

Raine

This is sent with Love

[Guest guest]

You indeed are lucky! How long have you been married to this nurse?

Raine

This is sent with Love

[Guest guest]

Welcome to the group, . I think that you'll find, as many of us have,

that the members of this group are a wealth of information and support of

all kinds. We come from all walks (no pun intended) of life, span the globe

and traverse the generations. I will send you my story via a private e-mail

to spare others from hearing the same story again.

Dolores (in CT)

New Guy

> Hey Gang!

> I am another new guy on the block. My symptoms started in early '96

and

> I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center.

If

> there is a good side to this disease, it's that my progression has been

very

> slow.

> PLS forced me to retire in Feb 2001 from the Navy after 25 years of

> service. Now I am (still) trying to adapt to my new lifestyle. My speech

> is somewhat slurred, my arms and legs have weakened, I have some world

class

> twitching going on, my falls would qualify me for entry in the WWF, but I

> have no evidence of any muscle atrophy and my EMGs were clean.

> I still get around pretty good with a cane as long as I take it easy

> (especially negotiating stairs). Being a die-hard OCB (Old Crippled

Biker),

> I have rigged my Harley with a side car (my legs could no longer hold a

bike

> up) and a neat little mechanism to assist my poor ole hands with operating

> the clutch.

> Of all the decisions I made in my life, the best one is that I married a

> pretty lady 25 years ago that is smarter than me, and a Registered Nurse!

> How's that for home health care!

> Learning that there are others out there through the " PLS-FRIENDS " has

> done a lot to improve my outlook. If invited would be proud to be part of

> your group!

> Later,

>

>

>

>

>

[Guest guest]

Hi ,

Welcome and I guess this is one more invitation to join our great group.

And I may as well tell you right here and right now, I am one of those hill

folks from WV that Vaughn warned you about. You will learn not to pay any

particular attention to much he says. Tennessee Hicks always have been a

little envious of those a little higher up in the world.....

I see by your address you live in Chesapeake, Va. Were you by any chance

ate the HSP-PLS TeanWalk held there in September? If you missed this one we

will catch you next year.

Ronnie (female)

Berkeley Springs, WV and PROUD of it.

New Guy

> Hey Gang!

> I am another new guy on the block. My symptoms started in early '96

and

> I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center.

If

> there is a good side to this disease, it's that my progression has been

very

> slow.

> PLS forced me to retire in Feb 2001 from the Navy after 25 years of

> service. Now I am (still) trying to adapt to my new lifestyle. My speech

> is somewhat slurred, my arms and legs have weakened, I have some world

class

> twitching going on, my falls would qualify me for entry in the WWF, but I

> have no evidence of any muscle atrophy and my EMGs were clean.

> I still get around pretty good with a cane as long as I take it easy

> (especially negotiating stairs). Being a die-hard OCB (Old Crippled

Biker),

> I have rigged my Harley with a side car (my legs could no longer hold a

bike

> up) and a neat little mechanism to assist my poor ole hands with operating

> the clutch.

> Of all the decisions I made in my life, the best one is that I married a

> pretty lady 25 years ago that is smarter than me, and a Registered Nurse!

> How's that for home health care!

> Learning that there are others out there through the " PLS-FRIENDS " has

> done a lot to improve my outlook. If invited would be proud to be part of

> your group!

> Later,

>

>

>

>

>

[Guest guest]

Hi ,

Welcome, new guy. I'm sorry you have PLS, but it is good that you new ones find

us. And, no invitation is necessary for you to join. Just come on in and stay.

I was dx 9/99 by a Mayo Clinic neurologist. I too have progressed slowly, and

walk quite slowly and without aid most of the time. However, I am finding it

more and more difficult to lift my rt. leg up high enough to get into my Jeep.

So, I just grab my pant leg, and haul the leg up!

I am envious of those of you who have a wonderful, loving,

supportive spouse. In fact, it downright angers me sometimes that mine turned

chicken and ran.........into the arms of another woman 1 1/2 years ago. You

and the others who have those wonderful spouses are so very lucky. It has to

help a great deal not to be dealing with this crap (I could use a much worse

word here) alone.

I sound bitter, but really, I am not. I do pretty well, and have a wonderful

loving family, and a few dear close friends who are my rock.

Stick around and feel free to give your input anytime!

Take care,

Laurel from Iowa

New Guy

Hey Gang!

I am another new guy on the block. My symptoms started in early '96 and

I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center. If

there is a good side to this disease, it's that my progression has been very

slow.

PLS forced me to retire in Feb 2001 from the Navy after 25 years of

service. Now I am (still) trying to adapt to my new lifestyle. My speech

is somewhat slurred, my arms and legs have weakened, I have some world class

twitching going on, my falls would qualify me for entry in the WWF, but I

have no evidence of any muscle atrophy and my EMGs were clean.

I still get around pretty good with a cane as long as I take it easy

(especially negotiating stairs). Being a die-hard OCB (Old Crippled Biker),

I have rigged my Harley with a side car (my legs could no longer hold a bike

up) and a neat little mechanism to assist my poor ole hands with operating

the clutch.

Of all the decisions I made in my life, the best one is that I married a

pretty lady 25 years ago that is smarter than me, and a Registered Nurse!

How's that for home health care!

Learning that there are others out there through the " PLS-FRIENDS " has

done a lot to improve my outlook. If invited would be proud to be part of

your group!

Later,

[Guest guest]

,

You are definitely invited to join with our group. You do have an advantage

over most of us with a nurse for a wife! While none of us wishes anyone to

have PLS, we have all found caring friends here. Lots of tears, smiles and

advice are yours with us whether you want them or not!! Welcome.

Vivian in land

[Guest guest]

,

You are definitely invited to join with our group. You do have an advantage

over most of us with a nurse for a wife! While none of us wishes anyone to

have PLS, we have all found caring friends here. Lots of tears, smiles and

advice are yours with us whether you want them or not!! Welcome.

Vivian in land

[Guest guest]

Hi ,

Welcome to our group. I have a page on the PLS Awareness site that has data

on 38 PLSers.

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

Here is a part of the page:

PLS'ers Data and Personal Info

Home

38,Boss, Ralph F

37. M

36. Aiston, Carla

35. Isenhour, Donna

34. Hickman, Vaughn

33. Westerfield, Gordon

32. , Ty

31. Boes, ilyn 30. Whitener, Al

29. Benoit, Gloria

28. Lachapelle,

27. Meacham,

26. Beckner, 25. , Thurza 24. Wilder,

23. Gray,

22. Nunn, 21. Moschel, 20. Hunt, Jim

19. Gratkowski, Coralee

18. Grove, Ronnie

17. King, Jane Anne

16. , Gerald 15. Aasland, Laurel 14.

Lockwood, Lavon

13. Hanlon,

12. BL 11. Cockshott, na 10. TJ

9. ,

8. Hekhuis, Galen 7. Dixon, 6. Brand,

Flora 5. Myrick, Carolyn

4. Gentner, 3. SM 2.

McCord, Jane 1. Thomson,

Data is listed in the order received. If you'd like to submit your

data, click here:

Data-Input

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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

[Guest guest]

Hi ,

Welcome to our group. I have a page on the PLS Awareness site that has data

on 38 PLSers.

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

Here is a part of the page:

PLS'ers Data and Personal Info

Home

38,Boss, Ralph F

37. M

36. Aiston, Carla

35. Isenhour, Donna

34. Hickman, Vaughn

33. Westerfield, Gordon

32. , Ty

31. Boes, ilyn 30. Whitener, Al

29. Benoit, Gloria

28. Lachapelle,

27. Meacham,

26. Beckner, 25. , Thurza 24. Wilder,

23. Gray,

22. Nunn, 21. Moschel, 20. Hunt, Jim

19. Gratkowski, Coralee

18. Grove, Ronnie

17. King, Jane Anne

16. , Gerald 15. Aasland, Laurel 14.

Lockwood, Lavon

13. Hanlon,

12. BL 11. Cockshott, na 10. TJ

9. ,

8. Hekhuis, Galen 7. Dixon, 6. Brand,

Flora 5. Myrick, Carolyn

4. Gentner, 3. SM 2.

McCord, Jane 1. Thomson,

Data is listed in the order received. If you'd like to submit your

data, click here:

Data-Input

Thomson

Solana Beach, Ca

Visit www.als-pls.org

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

[Guest guest]

It will be 25 years next June! Since I was in the Navy, we endured a lot of

separations with deployments and all. She's from Miss and I'm from Mass, so

we split the difference and settled in Virginia.

Re: New Guy

You indeed are lucky! How long have you been married to this nurse?

Raine

This is sent with Love

[Guest guest]

It will be 25 years next June! Since I was in the Navy, we endured a lot of

separations with deployments and all. She's from Miss and I'm from Mass, so

we split the difference and settled in Virginia.

Re: New Guy

You indeed are lucky! How long have you been married to this nurse?

Raine

This is sent with Love

[Guest guest]

Sorry, I didn't know about the walk. You can bet I'll be at the next one.

Did I read somewhere that there will be a PLS type get together in Florida

next year?

New Guy

>

>

> > Hey Gang!

> > I am another new guy on the block. My symptoms started in early '96

> and

> > I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center.

> If

> > there is a good side to this disease, it's that my progression has been

> very

> > slow.

> > PLS forced me to retire in Feb 2001 from the Navy after 25 years of

> > service. Now I am (still) trying to adapt to my new lifestyle. My

speech

> > is somewhat slurred, my arms and legs have weakened, I have some world

> class

> > twitching going on, my falls would qualify me for entry in the WWF, but

I

> > have no evidence of any muscle atrophy and my EMGs were clean.

> > I still get around pretty good with a cane as long as I take it easy

> > (especially negotiating stairs). Being a die-hard OCB (Old Crippled

> Biker),

> > I have rigged my Harley with a side car (my legs could no longer hold a

> bike

> > up) and a neat little mechanism to assist my poor ole hands with

operating

> > the clutch.

> > Of all the decisions I made in my life, the best one is that I married

a

> > pretty lady 25 years ago that is smarter than me, and a Registered

Nurse!

> > How's that for home health care!

> > Learning that there are others out there through the " PLS-FRIENDS " has

> > done a lot to improve my outlook. If invited would be proud to be part

of

> > your group!

> > Later,

> >

> >

> >

> >

> >

[Guest guest]

Sorry, I didn't know about the walk. You can bet I'll be at the next one.

Did I read somewhere that there will be a PLS type get together in Florida

next year?

New Guy

>

>

> > Hey Gang!

> > I am another new guy on the block. My symptoms started in early '96

> and

> > I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center.

> If

> > there is a good side to this disease, it's that my progression has been

> very

> > slow.

> > PLS forced me to retire in Feb 2001 from the Navy after 25 years of

> > service. Now I am (still) trying to adapt to my new lifestyle. My

speech

> > is somewhat slurred, my arms and legs have weakened, I have some world

> class

> > twitching going on, my falls would qualify me for entry in the WWF, but

I

> > have no evidence of any muscle atrophy and my EMGs were clean.

> > I still get around pretty good with a cane as long as I take it easy

> > (especially negotiating stairs). Being a die-hard OCB (Old Crippled

> Biker),

> > I have rigged my Harley with a side car (my legs could no longer hold a

> bike

> > up) and a neat little mechanism to assist my poor ole hands with

operating

> > the clutch.

> > Of all the decisions I made in my life, the best one is that I married

a

> > pretty lady 25 years ago that is smarter than me, and a Registered

Nurse!

> > How's that for home health care!

> > Learning that there are others out there through the " PLS-FRIENDS " has

> > done a lot to improve my outlook. If invited would be proud to be part

of

> > your group!

> > Later,

> >

> >

> >

> >

> >

[Guest guest]

Sorry, I didn't know about the walk. You can bet I'll be at the next one.

Did I read somewhere that there will be a PLS type get together in Florida

next year?

New Guy

>

>

> > Hey Gang!

> > I am another new guy on the block. My symptoms started in early '96

> and

> > I was diagnosed with PLS in Oct 2000 by Dr. Graves, UCLA Medical Center.

> If

> > there is a good side to this disease, it's that my progression has been

> very

> > slow.

> > PLS forced me to retire in Feb 2001 from the Navy after 25 years of

> > service. Now I am (still) trying to adapt to my new lifestyle. My

speech

> > is somewhat slurred, my arms and legs have weakened, I have some world

> class

> > twitching going on, my falls would qualify me for entry in the WWF, but

I

> > have no evidence of any muscle atrophy and my EMGs were clean.

> > I still get around pretty good with a cane as long as I take it easy

> > (especially negotiating stairs). Being a die-hard OCB (Old Crippled

> Biker),

> > I have rigged my Harley with a side car (my legs could no longer hold a

> bike

> > up) and a neat little mechanism to assist my poor ole hands with

operating

> > the clutch.

> > Of all the decisions I made in my life, the best one is that I married

a

> > pretty lady 25 years ago that is smarter than me, and a Registered

Nurse!

> > How's that for home health care!

> > Learning that there are others out there through the " PLS-FRIENDS " has

> > done a lot to improve my outlook. If invited would be proud to be part

of

> > your group!

> > Later,

> >

> >

> >

> >

> >

[Guest guest]

Thanks. Sounds like I found the right place!

Re: New Guy

Welcome very nice to meet you. Shirley (Michigan)

[Guest guest]

Thanks. Sounds like I found the right place!

Re: New Guy

Welcome very nice to meet you. Shirley (Michigan)

[Guest guest]

Thanks. Sounds like I found the right place!

Re: New Guy

Welcome very nice to meet you. Shirley (Michigan)

[Guest guest]

Thank you Vivian!

Re: New Guy

> ,

>

> You are definitely invited to join with our group. You do have an

advantage

> over most of us with a nurse for a wife! While none of us wishes anyone

to

> have PLS, we have all found caring friends here. Lots of tears, smiles

and

> advice are yours with us whether you want them or not!! Welcome.

>

> Vivian in land

>

>

>

[Guest guest]

Thank you Vivian!

Re: New Guy

> ,

>

> You are definitely invited to join with our group. You do have an

advantage

> over most of us with a nurse for a wife! While none of us wishes anyone

to

> have PLS, we have all found caring friends here. Lots of tears, smiles

and

> advice are yours with us whether you want them or not!! Welcome.

>

> Vivian in land

>

>

>

[Guest guest]

Thank you Vivian!

Re: New Guy

> ,

>

> You are definitely invited to join with our group. You do have an

advantage

> over most of us with a nurse for a wife! While none of us wishes anyone

to

> have PLS, we have all found caring friends here. Lots of tears, smiles

and

> advice are yours with us whether you want them or not!! Welcome.

>

> Vivian in land

>

>

>