New member

Posted October 10, 2003 · October 10, 2003

Welcome Priscilla )!!!!!!!!!!

Congrats on your 29 pounds so far )!!!!!!!

fitnessgurl777@... wrote:

Hi Everyone,

My names Priscilla, i'm a 20 female from MA, i love researching diet and

fitness and right now i'm on my journey to losing weight and reaching my goal,

my sw. 250 cw. 221 gw. 120 i've lost 29 lbs so far and i believe so now its time

to achieve, i would love to meet the rest of the group!!!

Be a F.R.O.G.,

GLYSDI,

I love living in the FOG

Gymmie, Tae and Bo

Posted October 10, 2003 · October 10, 2003

Welcome to the group. I hope you enjoy it here.

Teri from Cincinnatir

new member

> Hi Everyone,

> My names Priscilla, i'm a 20 female from MA, i love researching diet

and

> fitness and right now i'm on my journey to losing weight and reaching my

> goal, my sw. 250 cw. 221 gw. 120 i've lost 29 lbs so far and i believe so

now its

> time to achieve, i would love to meet the rest of the group!!!

>

Posted October 10, 2003 · October 10, 2003

Welcome to the group. I hope you enjoy it here.

Teri from Cincinnatir

new member

> Hi Everyone,

> My names Priscilla, i'm a 20 female from MA, i love researching diet

and

> fitness and right now i'm on my journey to losing weight and reaching my

> goal, my sw. 250 cw. 221 gw. 120 i've lost 29 lbs so far and i believe so

now its

> time to achieve, i would love to meet the rest of the group!!!

>

Posted October 10, 2003 · October 10, 2003

Welcome to the group. I hope you enjoy it here.

Teri from Cincinnatir

new member

> Hi Everyone,

> My names Priscilla, i'm a 20 female from MA, i love researching diet

and

> fitness and right now i'm on my journey to losing weight and reaching my

> goal, my sw. 250 cw. 221 gw. 120 i've lost 29 lbs so far and i believe so

now its

> time to achieve, i would love to meet the rest of the group!!!

>

Posted October 10, 2003 · October 10, 2003

Hi Priscilla,

I'm Liz, I'm a 39 year old mother of 2 teenaged boys living in

Cincinnati, OH.

I started WW last June and by Jan. had lost 55 pounds....I got off track

and gained 5 back, so I rejoined a few weeks ago.

SW 205, CW 159, GW 145

Posted October 10, 2003 · October 10, 2003

Hi Priscilla,

I'm Liz, I'm a 39 year old mother of 2 teenaged boys living in

Cincinnati, OH.

I started WW last June and by Jan. had lost 55 pounds....I got off track

and gained 5 back, so I rejoined a few weeks ago.

SW 205, CW 159, GW 145

Posted October 10, 2003 · October 10, 2003

Hi Priscilla,

I'm Liz, I'm a 39 year old mother of 2 teenaged boys living in

Cincinnati, OH.

I started WW last June and by Jan. had lost 55 pounds....I got off track

and gained 5 back, so I rejoined a few weeks ago.

SW 205, CW 159, GW 145

Posted November 12, 2003 · November 12, 2003

Well, Vicky, you are probably overwhelmed at how fast we respond! I welcome

you from California. I was diagnosed in 1997 and I'm 58 now. My symptoms

began with my speech.

Almost two years ago, the PLS community joined with the HSP (Hereditary

Spastic Paraplegia) community to form the Spastic Paraplegia Foundation

(SPF)...mouth full, huh? These are both upper motor neuron diseases and often

someone

will receive a PLS dx only later to learn it is HSP, and vice versa. We joined

forces so that we are now able to raise more money for research. Our

signature fundraiser, TeamWalk for Our Cure, was held in October and that alone

raised

over $140,000 (and our treasurer is still receiving donations). It's amazing

how far we've come in our two short years...but we'll save that for later.

We do have Patient Connections all over the country and that's your best

bet...meet some of us.

Thanks for finding us....and we definitely know how you feel right now.

Gentner

Fremont, CA

SP-foundation

www.sp-foundation.org

Posted November 12, 2003 · November 12, 2003

Hi Vicky,

Welcome to the PLS " Friends " group, and that's just what you'll find here, is

friends. I was also 51 when diagnosed with PLS at the Mayo Clinic in Minnesota.

I live in Iowa, so the famous clinic is just a hop, skip, and a jump from me.

I too knew nothing about PLS, and found this group within a day or two of

diagnosis, and these people are wonderful! I learned more here than anywhere

about the disease, as well as have gotten many laughs, lots of support, and made

many friends.

Once again, welcome to the best group on the net!

Hugs,

Laurel

New Member

I just found this web site today and joined. I am 51 and I also have

PLS. I have never talked to anyone that has it, so this is a new

experience for me. I will do an introduction File, probably next

wk. Please accept me into this group I really need it.

Vicky

Posted November 12, 2003 · November 12, 2003

Ive not heard of the Patient Connections GEO

lkgentner@... wrote:

Well, Vicky, you are probably overwhelmed at how fast we respond! I welcome

you from California. I was diagnosed in 1997 and I'm 58 now. My symptoms

began with my speech.

Almost two years ago, the PLS community joined with the HSP (Hereditary

Spastic Paraplegia) community to form the Spastic Paraplegia Foundation

(SPF)...mouth full, huh? These are both upper motor neuron diseases and often

someone

will receive a PLS dx only later to learn it is HSP, and vice versa. We joined

forces so that we are now able to raise more money for research. Our

signature fundraiser, TeamWalk for Our Cure, was held in October and that alone

raised

over $140,000 (and our treasurer is still receiving donations). It's amazing

how far we've come in our two short years...but we'll save that for later.

We do have Patient Connections all over the country and that's your best

bet...meet some of us.

Thanks for finding us....and we definitely know how you feel right now.

Gentner

Fremont, CA

SP-foundation

www.sp-foundation.org

Posted November 12, 2003 · November 12, 2003

In a message dated 11/12/2003 9:38:39 AM Pacific Standard Time,

congeo1@... writes:

Ive not heard of the Patient Connections GEO

Where have you been? :-) They are always listed in E-News (Kathi Geisler

posts the first of every month) and you can also find them on the SPF website.

www.sp-foundation.org

Several people have talked recently about Casual Connections where a few

local people just get together for lunch or dinner. However, since I read both

PLS and HSP lists, I read more than the average bear....me and Dale, that is.

Dale posts as much on the HSP list as he does here on PLS-Friends.

The HSP Discussion Group is HSP-L@... if you want to see what

they have to say...much like us.

Posted November 12, 2003 · November 12, 2003

Hi Vicky,

Welcome, welcome you are very much accepted. I was diagnosed in 2000. I'm on

Celebrex 200 mg 2 x a day for pain and Zanaflex 2 mg (supposed to be 6 a day,

but they zonk me out so I only take one at bedtime. I speak the language of

" slur " fluently and imitate a slow turtle when I walk. I'm hoping for a cure

soon for all of us. That's part of my story. Again, welcome, you are not

alone. Hang in there.

God Bless

Yolanda

New Member

I just found this web site today and joined. I am 51 and I also have

PLS. I have never talked to anyone that has it, so this is a new

experience for me. I will do an introduction File, probably next

wk. Please accept me into this group I really need it.

Vicky

Posted November 12, 2003 · November 12, 2003

Vicky,

You're accepted. Now, I'm not the official greeter, but just one of many

who will have already welcomed you. Believe me, if you have any needs,

this is the place to be for PLS. I'm 55 and have had PLS for about 9 or

10 years now. I have trouble really knowing since some things that may

have been precursors to PLS I just ignored. I now know that it would not

have made any difference if I had paid attention to them, this yucky

disease would have raised its ugly head anyway.

Please feel free to ask or say anything you want. Someone will have an

answer or just a kind, supportive word. Sometimes the latter is all one

needs.

Welcome? to the group. You will soon know you are surrounded by friends.

Mike Gray

Logansport IN

vickyb0521 wrote:

>I just found this web site today and joined. I am 51 and I also have

>PLS. I have never talked to anyone that has it, so this is a new

>experience for me. I will do an introduction File, probably next

>wk. Please accept me into this group I really need it.

>

>Vicky

>

Posted November 13, 2003 · November 13, 2003

Welcome Vicky:

You have found a 'wonderful group of friends' who will give you all the

support and information you could want. They are my 'lifeline'.

Will look forward to reading your introduction File. You don't need to ask

for 'acceptance' it is automatic here.

Take care and once again " welcome " .

Jo!

New Member

> I just found this web site today and joined. I am 51 and I also have

> PLS. I have never talked to anyone that has it, so this is a new

> experience for me. I will do an introduction File, probably next

> wk. Please accept me into this group I really need it.

>

> Vicky

>

Posted November 13, 2003 · November 13, 2003

,

As everyone else has said, sorry you have this " thing " , but glad you

found us. This group is amazing, as you will find out. I'm a new

member myself, just found this group last week and these incredible

people have welcomed me with open arms and given me a huge amount of

help and suggestions that I otherwise wouldn't have. Keep the faith

and stay tuned, because this group has much to share.

Don / OKC

ps: don't ask about grits!!!!!

Posted December 6, 2003 · December 6, 2003

Welcome Vicky

This is a great group. I am a lurker but oooh you learn so much by just

reading the questions and the groups answers.

Take care, Sandy

Posted December 8, 2003 · December 8, 2003

Hi Dave yes we would all love to pretend this is a bad dream unfortunately it's

here to stay but if you look on the bright side most of us if not all will live

longer than alot of people who have disease in their bodies .Im so glad i dont

have Alzheimers that would be pure torcher at least i know i will be disabled

and need help getting around but i will have my mind ( cognition ) i cant see

any part of Alzheimers that is good .Imagine for a minute that you dont know

your wife or none else who is close to you .It's like my old theory IF YOU THINK

YOU HAVE IT BAD THERES ALWAYS SOMEONE ELSE WHO HAS IT WORSE GEO

New Member

Hi all,

My name is Dave and I am Vicky's husband. We live in WA and just

returned home from the motel today. We are fine but our bedroom is

not, so we will camp out in the living room. Motels are hard for

Vicky (bathrooms etc.) to manage getting around in.

We were very lucky compared to allot of residents here. Friends of

ours got a tree thru there house and a tree also landed on there

horse. So we have damage but no where as bad as others.

I read this site with Vicky and decided I would like to join and

learn as much as I can about this disease. I really would like to

be in denial but I know I cannot.

Thank you for being here.

Dave

Posted December 8, 2003 · December 8, 2003

Hi Dave!

Welcome to the group. I was very happy to hear that you were

alright up there in Washington, and I'm glad to hear that your

damage is at least manageable. That's better than a tree through

your house!

There's alot of good info and encouragement on this website so stay

tuned. Hey, my husband is from Tacoma. I was telling Vicky that we

may visit up there in the Spring, so I'll keep you all posted to let

you know if and when. Again, welcome to the group.

Maureen - Castle Rock, CO

> Hi all,

>

> My name is Dave and I am Vicky's husband. We live in WA and just

> returned home from the motel today. We are fine but our bedroom

is

> not, so we will camp out in the living room. Motels are hard for

> Vicky (bathrooms etc.) to manage getting around in.

>

> We were very lucky compared to allot of residents here. Friends

of

> ours got a tree thru there house and a tree also landed on there

> horse. So we have damage but no where as bad as others.

>

> I read this site with Vicky and decided I would like to join and

> learn as much as I can about this disease. I really would like to

> be in denial but I know I cannot.

>

> Thank you for being here.

>

> Dave

Posted May 29, 2004 · May 29, 2004

Greetings,

Many here know the feelings you described. I am sure that your post will get

numerous replies. As you will find out, there is a possible cure - ablation -

for your problem. However there are some risks and it is not a foolproof

magic bullet. This has personal accounts from fellow afibbers who have had

ablations.

Please also see:

http://www.a-fib.com/PersonalExperiences.htm

There are also many other ablation veterans who post on AFIBsupport and

also many more who take meds instead.

Best wishes.

- cured after 2 ablations

Posted May 29, 2004 · May 29, 2004

Greetings,

Many here know the feelings you described. I am sure that your post will get

numerous replies. As you will find out, there is a possible cure - ablation -

for your problem. However there are some risks and it is not a foolproof

magic bullet. This has personal accounts from fellow afibbers who have had

ablations.

Please also see:

http://www.a-fib.com/PersonalExperiences.htm

There are also many other ablation veterans who post on AFIBsupport and

also many more who take meds instead.

Best wishes.

- cured after 2 ablations

Posted May 29, 2004 · May 29, 2004

Greetings,

Many here know the feelings you described. I am sure that your post will get

numerous replies. As you will find out, there is a possible cure - ablation -

for your problem. However there are some risks and it is not a foolproof

magic bullet. This has personal accounts from fellow afibbers who have had

ablations.

Please also see:

http://www.a-fib.com/PersonalExperiences.htm

There are also many other ablation veterans who post on AFIBsupport and

also many more who take meds instead.

Best wishes.

- cured after 2 ablations

Posted May 29, 2004 · May 29, 2004

In a message dated 5/29/04 6:00:22 AM Pacific Daylight Time,

markzanderus@... writes:

> So im home now getting depressed. I'm imaging my early departure

> from the earth due to this unexplained defect in my body. I feel so

> defective and cheated. I worry about stroke and my heart enlarging

> and never being normal.

>

> Well, sorry to be such a downer but if anyone has any words of

> wisdom for me they'd be greatly appreciated.

>

You're not alone .... this is how I feel every time I have an attack that

lasts longer than an hour or so. And the fear and depression are difficult to

shake. I also can't take ANY of the meds others do (except low-dose aspirin

daily) so the stroke risk scares me enormously. It it happens at night I wonder

if I will wake up if I fall asleep. This disorder IS a downer and it sucks

majorly.... but you will find a lot of support here ... and things (natural) to

try to help. For me, magnesium supplements 2x a day have helped enormously.

This gives me more of a sense of control and less of a sense of powerlessness

and impotence, which helps keep the fear at bay. But I still live in fear of

the next attack ... and every PVC that happens, or SVT attack, I wonder if

it's gonna trigger an a-fib. Then when they stop after a few minutes I am very

grateful and relieved. We've all been where you are right now (at least I have

been) ... keep sharing ... the support you get here will help I think.

People here understand, and more importantly, care. It's an amazing group.

Toni

CA

Posted May 29, 2004 · May 29, 2004