New to the Board

[Guest guest]

Sara, Hi welcome to our group. I'm 57 and have had PLS since 1991. I've had

a slow progression so far, knock on wood. I was very active person too, did

a lot of power walking along our beautiful beachs here. I had to give up my

job which I loved due to extreme fatigue and keeping my balance. I have gone

from a cane to using a walker full time now. I keep a positive attitude most

of the time. I just deal with PLS a day at a time. i have learned to adapt to

my life. You'd be surprised how you can figure out other ways to do things.

There are no easy answers to dealing with this everyone has their own way of

coping. We are all different some worse then others. I hope you have visited

our web page at www.sp-foundation.org its full of interesting articles and

information. Just ask anything you wish to know about you will get alot of

responds..............Flora from Florida

[Guest guest]

Hello - I'm new to this board. I’m a 46-year-old female and have

been diagnosis with PLS since last summer. It's been a very hard

disease to deal with since I was an avid swimmer, water/snow skier

and rode bike 10 miles aday. I'm a very happy and positive person

and I do have a wonderful family. I'm hoping to learn how others are

dealing with this disease from the message board. Have a nice day

and hope to hear from YOU.

[Guest guest]

Howdy. Let's see, I'm 54, male, and have been fussing with this PLS stuff

for over 10 years now. I used to do a fair amount of caving, and was on my

way learning hang gliding. PLS put an end to that sort of stuff, but I had

to injure myself in a commercial cave to realize the full extent of it.

These days I paddle around in a kayak. I can't walk very well anymore, and

climbing and stuff is beyond me now, but I can sure sit and paddle.

Granted, I won't be hiking some cool places, but I've found a lot of neat

stuff on rivers and lakes and swamps and the like. You can paddle real

hard and get an excellent workout, or you can just putt around like I do

most of the time and still get some exercise, fresh air, nifty scenery,

etc. I don't scout rapids, so I'm not a " whitewater " type of kayaker, I

spend most of my time on flatwater. I prefer a kayak to a canoe for a

number of reasons, but if you ever want to get anywhere on a windy day

you'll probably want a kayak. Besides, a lot of them are less " tippy " than

a canoe. They go faster too.

>Hello - I'm new to this board. I’m a 46-year-old female and have

>been diagnosis with PLS since last summer. It's been a very hard

>disease to deal with since I was an avid swimmer, water/snow skier

>and rode bike 10 miles aday. I'm a very happy and positive person

>and I do have a wonderful family. I'm hoping to learn how others are

>dealing with this disease from the message board. Have a nice day

>and hope to hear from YOU.

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

We are the CroMagnon of the future

[Guest guest]

>

> >Hello - I'm new to this board. I’m a 46-year-old female and have

> >been diagnosis with PLS since last summer. It's been a very hard

> >disease to deal with since I was an avid swimmer, water/snow skier

> >and rode bike 10 miles aday. I'm a very happy and positive person

> >and I do have a wonderful family. I'm hoping to learn how others

are

> >dealing with this disease from the message board. Have a nice day

> >and hope to hear from YOU.

>

>

> Galen Hekhuis NpD, JFR, GWA ghekhuis@e...

> We are the CroMagnon of the future

Thanks for your reply. I have to walk with the aid of 2 canes and

have no balance. I'm not letting life pass me by and try to stay

active and go places. I'm glad you are to. How do you carry the

kayak to the water? You must still have balance and happy for that.

I'm attending speech and physical therapy at this time. Had to

retire from a career that I really enjoyed in January of this year -

too many falls. Thank goodness for computers - the web keeps me

active- plus I'm writing a book (will take me 10 years) but something

to leave behind for my children. I think you have a great attitude

and Im postive all the time. I want people to want to be around me.

Life is way to short to go through it being unhappy. God Bless.

[Guest guest]

>Thanks for your reply. I have to walk with the aid of 2 canes and

>have no balance.

I don't have to walk with a cane, although it looks pretty funny if I try

to walk without one. As for balance, uh, let's just say I'm not as

" graceful " as I once was.

>I'm not letting life pass me by and try to stay

>active and go places. I'm glad you are to. How do you carry the

>kayak to the water?

I stick it in my van, back my van down a boatramp, then plop it out right

near the water. I then park the van (not too far away, I " check out "

launching places beforehand) and " walk " back to the boatramp. I have a

folding cane (Wal-Mart and such) that I fold and tuck up by the seat in the

kayak. Then I get in and paddle off. It really doesn't take much balance.

Sure, you can get kayaks that roll over in a heartbeat and are really

touchy, but the beginner level (cheap) kayaks are pretty forgiving. Thank

God for that, as I have startled some wildlife (who then startled me) to

where I have practically jumped out of the boat, but I have never yet even

sloshed water in it.

> You must still have balance and happy for that.

>I'm attending speech and physical therapy at this time. Had to

>retire from a career that I really enjoyed in January of this year -

>too many falls.

I can relate to that. I used to be a laboratory instrument maker (no joke,

that was my real title) at a university. I got to handle the electrical

side, the guy in the room behind me did the mechanical stuff. It was a

combination of fixing stuff (the manufacturer of some equipment went out of

business years ago -- there were no " spare parts " ) and building what

various doctors wished for. It became fairly obvious that I could no

longer do what I was hired for when I began to fall into experiments rather

than fix them.

>Thank goodness for computers - the web keeps me

>active- plus I'm writing a book (will take me 10 years) but something

>to leave behind for my children. I think you have a great attitude

>and Im postive all the time. I want people to want to be around me.

>Life is way to short to go through it being unhappy. God Bless.

Galen Hekhuis NpD, JFR, GWA ghekhuis@...

We are the CroMagnon of the future

[Guest guest]

I am also new..my name is Fern and I am from NYC... I was diagnosed in Jan

with ALS, but the diagnosis was changed to PLS a month later,due to a more

extensive EMG where the dr's at Columbia said that, for now, only the upper

motor

neurons are affected. I was relieved and I am hoping it stays PLS..

apparently PLS is so rare that I am being tested every 3 months for research.

Two

weeks ago, I fell and shattered my wrist, had surgery, and I am laid up at home

for about a month more. I am a teacher,and so I am on sick leave. I am

single and live alone, and I think that I will be purchasing a roller-walker for

the uneven pavement, but I can still use my cane inside my school, or other

smooth surfaces. I am also accustomed to being a very active person who always

loved long walks exploring the city, but now I am afraid of falling and

breaking more bones..I have found this list to be a wealth of info so far

hugs to all

Fern in NYC

check out my ebay items

eBay Seller List: fec139

[Guest guest]

Welcome fossil, jump on in and join the family!!! These folks will Love Ya,

cry with Ya , complain with you and educate you. Also they will rejoice with

you. We are very happy to have you!!

New to the Board

Hello - I'm new to this board. Iâ?Tm a 46-year-old female and have

been diagnosis with PLS since last summer. It's been a very hard

disease to deal with since I was an avid swimmer, water/snow skier

and rode bike 10 miles aday. I'm a very happy and positive person

and I do have a wonderful family. I'm hoping to learn how others are

dealing with this disease from the message board. Have a nice day

and hope to hear from YOU.

------------------------------------------------------------------------------

[Guest guest]

Welcome to a family that understands what your going through. If you want

tell us a little more about yourself so we have a better idea of what your

going through here. You also have found probably one of the most

knowledgeable places about your disease.

I'm Dale, 51 years old, wonderful family, have had it for 18 months now, was

extremely active like you and now cannot walk unaided, use a w/c some, it's

affecting my voice/swallowing, oh heck it's affecting everything ;-).

Ask away, you will get responses.

dale

New to the Board

Hello - I'm new to this board. Iâ?Tm a 46-year-old female and have

been diagnosis with PLS since last summer. It's been a very hard

disease to deal with since I was an avid swimmer, water/snow skier

and rode bike 10 miles aday. I'm a very happy and positive person

and I do have a wonderful family. I'm hoping to learn how others are

dealing with this disease from the message board. Have a nice day

and hope to hear from YOU.

[Guest guest]

Well welcome to you also Fern. As you have seen, ask away and you will get

all types of goofy answers!!..;-)

Re: new to the board

> I am also new..my name is Fern and I am from NYC... I was diagnosed in

Jan

> with ALS, but the diagnosis was changed to PLS a month later,due to a more

> extensive EMG where the dr's at Columbia said that, for now, only the

upper motor

> neurons are affected. I was relieved and I am hoping it stays PLS..

> apparently PLS is so rare that I am being tested every 3 months for

research. Two

> weeks ago, I fell and shattered my wrist, had surgery, and I am laid up at

home

> for about a month more. I am a teacher,and so I am on sick leave. I am

> single and live alone, and I think that I will be purchasing a

roller-walker for

> the uneven pavement, but I can still use my cane inside my school, or

other

> smooth surfaces. I am also accustomed to being a very active person who

always

> loved long walks exploring the city, but now I am afraid of falling and

> breaking more bones..I have found this list to be a wealth of info so far

> hugs to all

> Fern in NYC

>

>

>

> check out my ebay items

> eBay Seller List: fec139

>

>

>

[Guest guest]

Welcome to all new Friends. I'm 68, live in Knoxville, TN, and have had

some kind of ailment since '87. For ten years it was called MS by some of

the country's leading neuro's. One even co-authored a text book on dxing

MS. Ain't that a hoot. The MS Center in Denver (Englewood) finally got it

right after eight MRI's that showed no plaques on my brain or brainstem.

Actually PLS is a much better dx than Chronic Progressive MS - no

immunosupprescent drugs and no steroids.

I walk anywhere I want to go using two fore-arm canes. Being a slow

learner, it took me getting my face sewed up three times and breaking my leg

once to realize I could get hurt with my enstein gait and no sense of

balance.

Some of the folks on here can explain anything you want to know about this

crappy crud using words I can't even pronounce. Others can make me feel

like a real dummy by explaining things that even I can understand.

Make yourself at home and laugh a lot, it makes other people wonder what's

really wrong with you.

Vaughn

[Guest guest]

Vaughn, I thought you had a case of hoff and oth disease?? Hee Hee! Hey

it's almost April 1st, I promise I will behave myself this year.

Rita

Love & Hugs Here Also!

[Guest guest]

Vaugh, can't spell tonight, hoff & mouth.

Love & Hugs Here Also!

[Guest guest]

Hi Vaughn,

I have been to the MS center in Englewood, CO too. The doctor there that

ruled out MS was Dr. Alan Bowling. Was Dr. Bowling your doctor? When did

you live in Colorado? It is a small world,would sure hate to paint it!!!

Well take care. N.

Re: New to the Board

> Welcome to all new Friends. I'm 68, live in Knoxville, TN, and have had

> some kind of ailment since '87. For ten years it was called MS by some of

> the country's leading neuro's. One even co-authored a text book on dxing

> MS. Ain't that a hoot. The MS Center in Denver (Englewood) finally got

it

> right after eight MRI's that showed no plaques on my brain or brainstem.

> Actually PLS is a much better dx than Chronic Progressive MS - no

> immunosupprescent drugs and no steroids.

>

> I walk anywhere I want to go using two fore-arm canes. Being a slow

> learner, it took me getting my face sewed up three times and breaking my

leg

> once to realize I could get hurt with my enstein gait and no sense of

> balance.

>

> Some of the folks on here can explain anything you want to know about this

> crappy crud using words I can't even pronounce. Others can make me feel

> like a real dummy by explaining things that even I can understand.

>

> Make yourself at home and laugh a lot, it makes other people wonder what's

> really wrong with you.

>

> Vaughn

>

>

>

>

>

[Guest guest]

Hey there, Hi there, Ho there.

Welcome Aboard to our happy family.

I am sorry you have been diagnosed with this disease, but since you were you

have found a great group of people hear that will help you in many different

ways.

My name is Sandy, I live in Salem, Ore, and am 43 years young. I was just

recently diagnosed with PLS myself this last year, I was first diagnosed with

M.S. I did the shots, and even the chemotherapy for M.S. nothing helped me so my

Neuro sent me to a specialist.

I too have a very happy and fantastic family. I have a hubby of 23 years, two

sons, and 1 cutie of a grandson.

I hope you stay intouch with our group.

I am sorry I didnt catch your name.

I hope you have a great day, and keep smiling, Sandy

[Guest guest]

Dear Fern

Welcome!!! I am glad that you do not have ALS and hope it stays PLS. Or even

better a cure is around the corner!!! I was first diagnosed with PLS then

rediagnosed a few weeks ago with ALS. I hope you get the rollater soon so

you can enjoy your walks again!! It is a beautiful time of the year. Our

crabapple(Denver,Colorado) trees are blooming quickly. Early spring is

wonderful.I think there a few here in the group from NYC. I am glad you have

found this group!!!

Re: new to the board

> I am also new..my name is Fern and I am from NYC... I was diagnosed in

Jan

> with ALS, but the diagnosis was changed to PLS a month later,due to a more

> extensive EMG where the dr's at Columbia said that, for now, only the

upper motor

> neurons are affected. I was relieved and I am hoping it stays PLS..

> apparently PLS is so rare that I am being tested every 3 months for

research. Two

> weeks ago, I fell and shattered my wrist, had surgery, and I am laid up at

home

> for about a month more. I am a teacher,and so I am on sick leave. I am

> single and live alone, and I think that I will be purchasing a

roller-walker for

> the uneven pavement, but I can still use my cane inside my school, or

other

> smooth surfaces. I am also accustomed to being a very active person who

always

> loved long walks exploring the city, but now I am afraid of falling and

> breaking more bones..I have found this list to be a wealth of info so far

> hugs to all

> Fern in NYC

>

>

>

> check out my ebay items

> eBay Seller List: fec139

>

>

>

[Guest guest]

> Hello - I'm new to this board. I’m a 46-year-old female and have

> been diagnosis with PLS since last summer. It's been a very hard

> disease to deal with since I was an avid swimmer, water/snow skier

> and rode bike 10 miles aday. I'm a very happy and positive person

> and I do have a wonderful family. I'm hoping to learn how others

are

> dealing with this disease from the message board. Have a nice day

> and hope to hear from YOU.

*************************

Thanks for all the replies and emails from my PLS Friends. Let me

tell you more about myself. I'm a female 46 years old. I have a

wonderful loving husband of 18 years. We have five children and

three grandchildren and a brand new puppy. My first symptoms started

on December 1999 when I noticed that my right toe dragged while

walking. I had seen a chiropractor early December who pushed a disc

onto a nerve and my left arm went numb. I had to have surgery in

March of 2000 †" where they took a piece of my hipbone and went

through my neck †" raising the disc (c5-6) off the nerve. The piece

of hipbone holds the disc back in place. At the same time †" my right

leg started with spasticity. I went to a local Neurologist and the

testing began. I had EMGs, spinal taps and the entire test

associated with checking for ALS and MS. I could still walk normal

at that time. A year later he sent me to Mayo Clinic and more test

were completed along with another spinal tap. Doctors at Mayo said

that it could possibly be MS. So I continued to see my Neurologist

every three months and of course the symptoms continue to get worst.

By 2002, he again sent me back to Mayo Clinic and more test and same

diagnosis of possibly MS. I could still walk normally †" attending a

nieces wedding in Florida and could enjoy the lovely beaches and

swimming in the ocean. By October of 2002 †" I had to start walking

with one cane †" but still had balance. I then started on Bacoflen

and didn’t seem to help. So my doctors switch me over to Zanaflex

(The drug from hell). By March of 2003 my liver was shutting down

due to the Zanaflex. Went off all medicine and liver is fine today.

I even had steroid ejections at a very high dose for one week in

2003 - which brought no relief. By 2003 †" I was sent to

Northwestern Hospital in Chicago and was seen my Dr. Heller who

diagnosed me with PLS. I now walk with the aid of two canes †" have

speech and shallow problems and I have no balance. I’m attending

speech and physical therapy today. Doesn’t seem to be helping. I’m

so afraid that in time †" I will have to use a wheelchair. I have

fallen so many times that if I had a quarter for each time †" I’d be

rich. Broke my left arm in September and fell in January of this

year †" splitting open my forehead. I had a wonderful career working

for the cable company and had to quit in January of this year. I’m

currently on short-term disable and will probably go into long term.

I have filed for Social Security and waiting on their decision. The

insurance company has it in their mind that I should go back to

work. They just don’t understand that I cannot walk and talk. It

was very hard to have your co-workers pick you up off the floor when

you fall. I would love to go back to work †" but in my heart I know

that I’m not getting better. I do have a great attitude. I’m not

depressed and I love life. I thank God that I found this web site

where I can learn more. My name is Sara Vicks and I live in Clinton,

Iowa. We live on the Mississippi River. So to all my PLS Friends †"

God Bless all of you. Sara

[Guest guest]

Hello friend, welcome aboard. Don't give up your past hobbies just yet, I

believe that you'll do them again. Welcome to our family. I have PLS but PLS

does not have me so..., I go on living and waiting for that time (not in denial)

when this will just be a thing of the past. See you around the PLS strip. Take

care.

God Bless

Yolanda

New to the Board

Hello - I'm new to this board. Iâ?Tm a 46-year-old female and have

been diagnosis with PLS since last summer. It's been a very hard

disease to deal with since I was an avid swimmer, water/snow skier

and rode bike 10 miles aday. I'm a very happy and positive person

and I do have a wonderful family. I'm hoping to learn how others are

dealing with this disease from the message board. Have a nice day

and hope to hear from YOU.

[Guest guest]

Hi Fern,

Welcome aboard. Sorry about your wrist. Sounds like you've had a rough time.

I have PLS too and I have fallen as well, but thank God nothing is broken. We

hope you like it here as we all wait together for that wonderful day when all

this will be a thing of the past. See you around the PLS strip and hang in

there, it's not over. Take care.

God Bless

Yolanda

Re: new to the board

I am also new..my name is Fern and I am from NYC... I was diagnosed in Jan

with ALS, but the diagnosis was changed to PLS a month later,due to a more

extensive EMG where the dr's at Columbia said that, for now, only the upper

motor

neurons are affected. I was relieved and I am hoping it stays PLS..

apparently PLS is so rare that I am being tested every 3 months for research.

Two

weeks ago, I fell and shattered my wrist, had surgery, and I am laid up at

home

for about a month more. I am a teacher,and so I am on sick leave. I am

single and live alone, and I think that I will be purchasing a roller-walker

for

the uneven pavement, but I can still use my cane inside my school, or other

smooth surfaces. I am also accustomed to being a very active person who always

loved long walks exploring the city, but now I am afraid of falling and

breaking more bones..I have found this list to be a wealth of info so far

hugs to all

Fern in NYC

check out my ebay items

eBay Seller List: fec139

[Guest guest]

fern i also am from nyc and was diagnosed at columbia what are your

symptoms and where do you live

my address is Ahill103@...

Re: new to the board

> I am also new..my name is Fern and I am from NYC... I was diagnosed in

Jan

> with ALS, but the diagnosis was changed to PLS a month later,due to a more

> extensive EMG where the dr's at Columbia said that, for now, only the

upper motor

> neurons are affected. I was relieved and I am hoping it stays PLS..

> apparently PLS is so rare that I am being tested every 3 months for

research. Two

> weeks ago, I fell and shattered my wrist, had surgery, and I am laid up at

home

> for about a month more. I am a teacher,and so I am on sick leave. I am

> single and live alone, and I think that I will be purchasing a

roller-walker for

> the uneven pavement, but I can still use my cane inside my school, or

other

> smooth surfaces. I am also accustomed to being a very active person who

always

> loved long walks exploring the city, but now I am afraid of falling and

> breaking more bones..I have found this list to be a wealth of info so far

> hugs to all

> Fern in NYC

>

>

>

> check out my ebay items

> eBay Seller List: fec139

>

>

>

[Guest guest]

> Hello friend, welcome aboard. Don't give up your past hobbies just

yet, I believe that you'll do them again. Welcome to our family. I

have PLS but PLS does not have me so..., I go on living and waiting

for that time (not in denial) when this will just be a thing of the

past. See you around the PLS strip. Take care.

>

> God Bless

> Yolanda

> New to the Board

>

>

> Hello - I'm new to this board. Iâ¿ " m a 46-year-old female and have

> been diagnosis with PLS since last summer. It's been a very hard

> disease to deal with since I was an avid swimmer, water/snow

skier

> and rode bike 10 miles aday. I'm a very happy and positive

person

> and I do have a wonderful family. I'm hoping to learn how others

are

> dealing with this disease from the message board. Have a nice

day

> and hope to hear from YOU.

>

>

>

>

>

[Guest guest]

Hope on Sara, hope on!!! It WILL be a thing of the past. I believe this with

all of my heart. See you around. Take care friend.

God Bless

Yolanda

New to the Board

>

>

> Hello - I'm new to this board. Iâ¿ " m a 46-year-old female and have

> been diagnosis with PLS since last summer. It's been a very hard

> disease to deal with since I was an avid swimmer, water/snow

skier

> and rode bike 10 miles aday. I'm a very happy and positive

person

> and I do have a wonderful family. I'm hoping to learn how others

are

> dealing with this disease from the message board. Have a nice

day

> and hope to hear from YOU.

>

>

>

>

>