Re: Tawny

[Guest guest]

Welcome Tawny!

[Guest guest]

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry (emotional

liability kicked in) couldn't utter a word. Doug , my husband had to talk for

me. i thought to myself all these people look like me, I really do have this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see him

on MDA appointments which

is every six months. You really should join in with our local MDA Clinic if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

butting here in a little, if anyone has a meet-up with Floridians i would love

to know, and attend,

with or without a confirmed dx of either pls or hsp, still would be nice meeting

others that are famliar with what go thru.

thanks

marfla

orlando

Be Blessed

Re: Tawny

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry (emotional

liability kicked in) couldn't utter a word. Doug , my husband had to talk

for

me. i thought to myself all these people look like me, I really do have

this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see him

on MDA appointments which

is every six months. You really should join in with our local MDA Clinic if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

sorry, you are not butting in----i don't know where people are----i can't travel

out of the county with my wheelchair transport, so guess that was where my head

was at. certainly don't want to leave anyone out!

Marfla marfla04@...> wrote: butting here in a little, if anyone has

a meet-up with Floridians i would love to know, and attend,

with or without a confirmed dx of either pls or hsp, still would be nice meeting

others that are famliar with what go thru.

thanks

marfla

orlando

Be Blessed

Re: Tawny

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry (emotional

liability kicked in) couldn't utter a word. Doug , my husband had to talk

for

me. i thought to myself all these people look like me, I really do have

this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see him

on MDA appointments which

is every six months. You really should join in with our local MDA Clinic if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

Are you in Florida? How many others are in Florida and where abouts?

I am in Orlando. Travel for work to Clearwater/Tampa area, Fort Walton Beach,

Defuniak Springs, Tallahassee, ville, Daytona area, and Fort Lauderdale

area (actually I stay in Planation).

So if anyone is around any of these areas, and would like to meet up sometime,

just le tme know. Would be grand to meet others, share, laugh, and eating is my

favorite past time LOL

Be Blessed

Re: Tawny

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry (emotional

liability kicked in) couldn't utter a word. Doug , my husband had to talk

for

me. i thought to myself all these people look like me, I really do have

this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see

him on MDA appointments which

is every six months. You really should join in with our local MDA Clinic

if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

wait a sec---i cannot join mda as far as i know because pls is not included in

mda. mda criteria is that it has to be upper and lower motor neuron. right?

belgium46@... wrote: Tawny, I also feared meeting my first PLS'er I guess

maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry (emotional

liability kicked in) couldn't utter a word. Doug , my husband had to talk for

me. i thought to myself all these people look like me, I really do have this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see him

on MDA appointments which

is every six months. You really should join in with our local MDA Clinic if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

I am in a little town called Dunedin, just north of clearwater--pretty close to

intercoastal waters.

Tawny

Marfla marfla04@...> wrote:

Are you in Florida? How many others are in Florida and where abouts?

I am in Orlando. Travel for work to Clearwater/Tampa area, Fort Walton Beach,

Defuniak Springs, Tallahassee, ville, Daytona area, and Fort Lauderdale

area (actually I stay in Planation).

So if anyone is around any of these areas, and would like to meet up sometime,

just le tme know. Would be grand to meet others, share, laugh, and eating is my

favorite past time LOL

Be Blessed

Re: Tawny

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry (emotional

liability kicked in) couldn't utter a word. Doug , my husband had to talk

for

me. i thought to myself all these people look like me, I really do have

this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see

him on MDA appointments which

is every six months. You really should join in with our local MDA Clinic

if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

I know where that is as I have a aunt that lives there. Not an aunt that i have

contact with except a few years back she had open heart surgery. My cousin, her

daughter was there, and I went over to see both. So I have only been there

once, but know where you are sorta.

I believe there are several ppl in Florida struggling with PLS, or HSP.

Do you have a neuro over there that knows enough about PLS or HSP to offer you

the best health care needed?

Finding neuro's in Orlando that gets out of textbooks, " standard " diseases I

have found difficult. One would think as large as Orlando there would be more

opportunities in finding a neurologists that one can work with. Still hoping

this new neuro I started seeing in Dec will be one of those I can work with. He

is new to area, but has been practicing in Davenport, actually still has an

office there. So he goes between to two.

Wishing you the best.

marfla

orlando

Be Blessed

Re: Tawny

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry

(emotional

liability kicked in) couldn't utter a word. Doug , my husband had to

talk for

me. i thought to myself all these people look like me, I really do have

this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see

him on MDA appointments which

is every six months. You really should join in with our local MDA Clinic

if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

Pending your local MDA region, you may join them. I was referred to the

MDA by a neurologist (referral required) here in Dallas and they were

the one's that diagnosed PLS November 2002. Been with them ever since.

Norton

Re: Tawny

wait a sec---i cannot join mda as far as i know because pls is not

included in mda. mda criteria is that it has to be upper and lower

motor neuron. right?

belgium46@... wrote: Tawny, I also feared meeting my first PLS'er I

guess maybe it was the fact

that yes I really have this. I think my first meeting was here in

Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right

now (Blond e moment). but she asked everyone in the room to talk about

themselves.

Well I got the biggest lump in my throat and just started to cry

(emotional

liability kicked in) couldn't utter a word. Doug , my husband had to

talk for

me. i thought to myself all these people look like me, I really do

have this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only

see him on MDA appointments which

is every six months. You really should join in with our local MDA

Clinic if

you aren't already. They really are a nice bunch of people and can be

of

assits to you. Talk to Dr lin

about..........................Flora

[Guest guest]

Belgium46, and anybody else who can help me,

Hello;

I am looking for PLSers in Canada, or Ontario, who has been dx'd with PLS.

They can reach me at ricturn@... ; please, contact me here in London,

Ontario, Canada. I am looking for anyone else, who has been diagnosed (dx'ed) in

the country, or area.

Thanks,

belgium46@... wrote:

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry (emotional

liability kicked in) couldn't utter a word. Doug , my husband had to talk for

me. i thought to myself all these people look like me, I really do have this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see him

on MDA appointments which

is every six months. You really should join in with our local MDA Clinic if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

glad you know where abouts it is....yes i have doc that i have utmost confidence

in actually and finally...he is also good patient advocate.

sadly, there is little to do between now and when i get medicare in 1/07 about

getting the pump, so we are trying botox b for increased spasms and pain. told

him i wasn't going back to nursing home. of course, he is unable to do anything

about medicaid's rules. cannot sleep cause now i am getting stuck and in god

awful pain in shoulders, elbows, knees and hips and most recently my damned jaws

started clamping shut and hurting so badly. just came home from doc so thought

i would just go on and on for a minute. i wish to remain with my dogs and to do

that i must remain on my own. i am almost ceding to house cleaner but have to

juggle monies to make that happen. because bathing takes so much energy, i

dread it and don't do it as often as i need to do it. i think i have finally

gained a few pounds and am happy about that and because i couldn't afford ensure

or equivelant, i started making cookies. i would stir up the batter (as that is

hardest part)_ and then just keep in

fridge and make some here and there. been doing that since dec. so while i

wait for my microwave dinner, i put cookies in the toaster oven!!! hee hee.

well, i am tired as trip to doc is exhausting. will get dogs settled and lay

down for a while.

Tawny

Marfla marfla04@...> wrote:

I know where that is as I have a aunt that lives there. Not an aunt that i

have contact with except a few years back she had open heart surgery. My

cousin, her daughter was there, and I went over to see both. So I have only

been there once, but know where you are sorta.

I believe there are several ppl in Florida struggling with PLS, or HSP.

Do you have a neuro over there that knows enough about PLS or HSP to offer you

the best health care needed?

Finding neuro's in Orlando that gets out of textbooks, " standard " diseases I

have found difficult. One would think as large as Orlando there would be more

opportunities in finding a neurologists that one can work with. Still hoping

this new neuro I started seeing in Dec will be one of those I can work with. He

is new to area, but has been practicing in Davenport, actually still has an

office there. So he goes between to two.

Wishing you the best.

marfla

orlando

Be Blessed

Re: Tawny

Tawny, I also feared meeting my first PLS'er I guess maybe it was the fact

that yes I really have this. I think my first meeting was here in Florida

Kathi held it at a motel near Ft Myers or Naples can't remember right now

(Blond

e moment). but she asked everyone in the room to talk about themselves.

Well I got the biggest lump in my throat and just started to cry

(emotional

liability kicked in) couldn't utter a word. Doug , my husband had to

talk for

me. i thought to myself all these people look like me, I really do have

this!!

But I also felt I'm not alone in this battle of

mine.......................Tell (lin) I said Hi. I only see

him on MDA appointments which

is every six months. You really should join in with our local MDA Clinic

if

you aren't already. They really are a nice bunch of people and can be of

assits to you. Talk to Dr lin about..........................Flora

[Guest guest]

Marfla,

You will be uplifted by meeting those who know what you are going

through--most I have met keep a positive attitude and are very lovely

people! The name of the disease is not important--it's knowing that

others out there can relate and will try to help you get through what

you are dealing with! Like I've said before, I've met Flora and Doug

and they are an awesome couple!

Sue Me

> butting here in a little, if anyone has a meet-up with Floridians i

would love to know, and attend,

> with or without a confirmed dx of either pls or hsp, still would be

nice meeting others that are famliar with what go thru.

>

> thanks

> marfla

> orlando

> Be Blessed>

[Guest guest]

Tawny hi there, don't worry we aren't moving yet as you can see from Doug's

e-mail he sent. Very funny DOUG!...............I go today for physical

therapy at St 's Physical offices at the Carillons near St

Pete-Clearwater

airport area. I've been having problems with my neck being sore . When I

turn my neck it sounds like I have sand in it. I'm really tight across the

shoulder area. Dr lin give me the referral. Tell you later about it.

hope you are OK I know you were having a ruff time last week before we went on

vacation. You better get on your party dress cause we should meet

soon....We'll come to you .......Flora

[Guest guest]

Ok Tawny get your butt in gear and go for that PT you will love the feeling

of feeling weightless in the water. It allows you to walk almost normal well

that's debatable but what the heck go for it................where would you

go for it , I mean the PT?.......Flora

[Guest guest]

Hey,

well, had a few days where i was ready to take on the world (as long as i got

my nap!) but then got a bit pissy after they were over and the longer i had to

stay in bed, the pissier i got. think i am over myself enough to actually

participate in group again. way too much spasticity for my comfort level and

way too much pain. making arms harder and harder to use to transfer. one

morning i may feel ok but as soon as i am up for more than a few hours, i am

back in bed. this is even with college basketball tourney going on. i did get

to see my lil' sibs play hockey satruday tho.

we'll plan a meet sometime soon regardless of how i am feeling. i am supposed

to be working on getting aquatic pt but haven't followed up with primary about

it cause i have mostly been in bed. i get to hating it...the bed. at least the

dogs are there too (she tells herself over and over!!).

tawny

belgium46@... wrote:

Tawny hi there, don't worry we aren't moving yet as you can see from Doug's

e-mail he sent. Very funny DOUG!...............I go today for physical

therapy at St 's Physical offices at the Carillons near St

Pete-Clearwater

airport area. I've been having problems with my neck being sore . When I

turn my neck it sounds like I have sand in it. I'm really tight across the

shoulder area. Dr lin give me the referral. Tell you later about it.

hope you are OK I know you were having a ruff time last week before we went on

vacation. You better get on your party dress cause we should meet

soon....We'll come to you .......Flora

[Guest guest]

tawny,

i just started water PT and i love it. i'm in my 30s

like you and have also had rapid progression. from

running marathons 2 years ago to AFOs on both legs,

4-wheeled walker or scooter, and needing a

text-to-speech device to communicate. also, like you,

my doc is still concerned about ALS because of how

fast things are moving. but so far, EMGs are normal so

i'm really happy about that.

anyway, back to water PT. i couldn't do regular PT

because it aggravated the spasticity and clonus but

the water PT is working really well. also, saw my doc

at duke last wk and he told me he went to a motor

neuron conference in scotland recently where there was

a big presentation on water PT. he said the group

presented found in their research that water PT was

one of the most effective forms of exercise for those

w/motor neuron disease, esp. those w/PLS.

so give it a try, girl! the best part is when the

therapist pours you in the whirlpool at the end;-)

sarah

--- THSC dukerules413@...> wrote:

> Hey,

> well, had a few days where i was ready to take on

> the world (as long as i got my nap!) but then got a

> bit pissy after they were over and the longer i had

> to stay in bed, the pissier i got. think i am over

> myself enough to actually participate in group

> again. way too much spasticity for my comfort level

> and way too much pain. making arms harder and

> harder to use to transfer. one morning i may feel

> ok but as soon as i am up for more than a few hours,

> i am back in bed. this is even with college

> basketball tourney going on. i did get to see my

> lil' sibs play hockey satruday tho.

>

> we'll plan a meet sometime soon regardless of how

> i am feeling. i am supposed to be working on

> getting aquatic pt but haven't followed up with

> primary about it cause i have mostly been in bed. i

> get to hating it...the bed. at least the dogs are

> there too (she tells herself over and over!!).

>

> tawny

>

> belgium46@... wrote:

> Tawny hi there, don't worry we aren't moving yet

> as you can see from Doug's

> e-mail he sent. Very funny DOUG!...............I go

> today for physical

> therapy at St 's Physical offices at the

> Carillons near St Pete-Clearwater

> airport area. I've been having problems with my

> neck being sore . When I

> turn my neck it sounds like I have sand in it. I'm

> really tight across the

> shoulder area. Dr lin give me the referral.

> Tell you later about it.

> hope you are OK I know you were having a ruff time

> last week before we went on

> vacation. You better get on your party dress cause

> we should meet

> soon....We'll come to you .......Flora

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

thank you sarah, just found this email among all the ones i got behind on!

sounds great and i really need to loosen up my shoulders the most, but would

be nice to move my legs around alot!! miss that.

have had a lot to do this week (for me) and next week i will call my primary

doc's office and see if i can't go to the place where flora is going for her reg

PT. was looking for closer so maybe a hospital closer will have it and have

transportation so i don't have to pay for it. that would be a perfect world.

so do you still go to water since your pt? i think my primary can get me in

free at one of the local centers with pools and they have a lift in one of them.

was thinking all i need is direction of how to do whatever (which is all they

pay for anyway) and then i would make effort to go to pool myself afterwards.

wouldn't mind being thrown into the ocean with my dogs, but i don't have friends

strong enough to get me there!!

my emg's are still ok too, so i hold my breath and watch their reactions each

time!!!

thanks for the encouragement and i hope to get this set next week!

Tawny

-Witt srwitt@...> wrote:

tawny,

i just started water PT and i love it. i'm in my 30s

like you and have also had rapid progression. from

running marathons 2 years ago to AFOs on both legs,

4-wheeled walker or scooter, and needing a

text-to-speech device to communicate. also, like you,

my doc is still concerned about ALS because of how

fast things are moving. but so far, EMGs are normal so

i'm really happy about that.

anyway, back to water PT. i couldn't do regular PT

because it aggravated the spasticity and clonus but

the water PT is working really well. also, saw my doc

at duke last wk and he told me he went to a motor

neuron conference in scotland recently where there was

a big presentation on water PT. he said the group

presented found in their research that water PT was

one of the most effective forms of exercise for those

w/motor neuron disease, esp. those w/PLS.

so give it a try, girl! the best part is when the

therapist pours you in the whirlpool at the end;-)

sarah

--- THSC dukerules413@...> wrote:

> Hey,

> well, had a few days where i was ready to take on

> the world (as long as i got my nap!) but then got a

> bit pissy after they were over and the longer i had

> to stay in bed, the pissier i got. think i am over

> myself enough to actually participate in group

> again. way too much spasticity for my comfort level

> and way too much pain. making arms harder and

> harder to use to transfer. one morning i may feel

> ok but as soon as i am up for more than a few hours,

> i am back in bed. this is even with college

> basketball tourney going on. i did get to see my

> lil' sibs play hockey satruday tho.

>

> we'll plan a meet sometime soon regardless of how

> i am feeling. i am supposed to be working on

> getting aquatic pt but haven't followed up with

> primary about it cause i have mostly been in bed. i

> get to hating it...the bed. at least the dogs are

> there too (she tells herself over and over!!).

>

> tawny

>

> belgium46@... wrote:

> Tawny hi there, don't worry we aren't moving yet

> as you can see from Doug's

> e-mail he sent. Very funny DOUG!...............I go

> today for physical

> therapy at St 's Physical offices at the

> Carillons near St Pete-Clearwater

> airport area. I've been having problems with my

> neck being sore . When I

> turn my neck it sounds like I have sand in it. I'm

> really tight across the

> shoulder area. Dr lin give me the referral.

> Tell you later about it.

> hope you are OK I know you were having a ruff time

> last week before we went on

> vacation. You better get on your party dress cause

> we should meet

> soon....We'll come to you .......Flora

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

hey tawny,

you're so welcome! i know what you mean about the shoulders/chest

being all tight and painful; it's yucky and i think water might even

help with that some. the PT has me do some stretches and exercises

in the water for the chest and back that do provide some temporary

relief.

i haven't tried a regular pool yet; i really like the warmer water

of the therapy pool and there's a lift and all that good stuff. but

i already can do much of the stuff on my own once i get in, and if

your doc can write a prescription for regular pool where there's a

lift that sounds good!

i was wondering about your transportation. that is tough. i can't

drive either (have asked a couple of times but got the big N-O; like

you, i have issues w/my hands that knock hand controls out and don't

have good leg/foot control) but i'm lucky in that we have a

babysitter for our kids and she drives me to water PT and wherever

else i need to go.

anyway, i have rambled on;-) have a good wknd!

sarah

> > Tawny hi there, don't worry we aren't moving yet

> > as you can see from Doug's

> > e-mail he sent. Very funny DOUG!...............I go

> > today for physical

> > therapy at St 's Physical offices at the

> > Carillons near St Pete-Clearwater

> > airport area. I've been having problems with my

> > neck being sore . When I

> > turn my neck it sounds like I have sand in it. I'm

> > really tight across the

> > shoulder area. Dr lin give me the referral.

> > Tell you later about it.

> > hope you are OK I know you were having a ruff time

> > last week before we went on

> > vacation. You better get on your party dress cause

> > we should meet

> > soon....We'll come to you .......Flora

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

[Guest guest]

Hey you gotta start sometime....Keep on looking it just might be around the

corner!! LOL............Flora

[Guest guest]

Tawny, I've access to a pool here in Arcadia, Florida, and in the summer in

Toms River New Jersey. I was a professional swimmer as a kid. Now I find,

if I exercise in water....for two days after I'm in pain from the back down

to the toes. What I think my problem is, is that I do too much at a time.

I'll just go in and walk up and down for a short while, and see if that bothers

me. How I love the water. No more beaches for me, sad to say. Connie

[Guest guest]

jane anne,

the bouancy (sp?) of the water makes it not really that weight bearing. trust

me the first time and beginning of the second time i couldn't even stand at all

without them standing on my feet. my walking isn't walking per se, but i call

it my tawny walk; therefore it is walking. i have seen it on video and it looks

nothing like it feels like----feels like i am moving faster and actually walking

like normal-----um, that ain't it, but close enough for me. i love the being

erect feeling that i have missed for 2 1/2 of my 3 years with this illness.

take care.

tawny

King gking@...> wrote:

Tawny,

I wonder why you can stand in water and not on the ground? My

right leg gives in with me so am wondering if I can do exercise in water

now.

Jane Anne (Ga.)

Re: Tawney

> Jane Anne---

> I haven't been able to stand since early in the first year of the

> progression----like somewhere within the first 6 months....the rest was

> propelling self from chair 'til i had a big fall....then i still did but

> it got

[Guest guest]

Tawny,

Thanks so much and I will ask Dr. Fink for a prescription for

the water exercise. When I see him Friday.

Jane Anne

Re: Tawny