PLS

April 9, 1999

Bonnie...Without a doubt, you are not alone. More and more PLS patients and

caregivers are beginning to surface to trade stories and experiences and offer

support to others.

My wife has been dealing with her PLS for over 5 years. She is 52 and prior to

the diagnosis a picture of health. Hers came on gradually and has progressed

slowly. At the present, she cannot walk unaided. She uses a walker around the

house and a shopping cart or electric scooter on the rare occasions when we

venture out. Her speech is at times almost inaudable, her stamina is very

lower, she gets lightheaded and dizzy on occasion and has developed a severe

spastic gait. Through it all, she has been very brave and strong, not giving

an inch without a fight.

With all due respect to Joe Alberstadt, your condition may never get to the

level of his. PLS has been known to render a patient totally debilitated and

has also been documented as plateauing in other patients. One thing for

certain, no two PLS patients are alike. The disease seems to have a mind of its

own.

Surround yourself with family and friends who care and understand (and don't

forget your new extended family right here) and stay positive. Keep informed

and continue to seek out more information. Stay brave and focused and please

keep in touch. Kind thoughts always...Doug Brand/St. sburg, FL

_______________________________________________________________________________

Subject: PLS

From: <PLS-FRIENDSonelist> at ~Internet

Date: 4/9/99 12:43 PM

From: EPSPLSPAL@...

It is so comforting to know that there are others out there with the same

condition.

My doctor doesn't seem to know very much about this. He knew nothing of the

web site, or newsletter. He also let me to believe that this wasn't such a

serious condition. Of course, maybe he didn't want to scare me. I am at

the initial stages I guess. I have trouble walking, drag my left leg, have

toe/foot drop and loss my balance and occasionally fall. All I was told was

that it would probably get slowly worse and there was no cure. He gave me

baclofen and told me I could take as much as I wanted whenever I

wanted.....and that was it. Now I am hearing of people would need total

assistance and wonder if that is what I have to look forward to. I am 47

years old and this is not a happy prospect.

I look forward to getting your newsletter and communicating with other PLS

pals.

Bonnie

Bonnie;You are now 47.I don't want to scare you but by the time your 67,

you'll probably need total assistance. That's the stage I'm in right now. It

doesn't mean I am stop living. I enjoy life. I have never took any drugs and

don't take any now. What has kept me going is attitude. Your neurologist is

no stoop. He told you exactly what mine told me . You will go down gradually.

It will be so gradual that only you will notice the minuscule changes. My

first symptom was 21 years ago and it seems to mimic exactly what you

described. I worked for 11 years after my first symptoms. I was a real estate

salesman. When it got to the point had to hang on to my clients arm for

balance and be picked up off the ground a few times, I decided to take s s

disability. But it wasn't right away. It was probably a year after I started

holding on to clients occasionally and falling embarrassingly. As a matter of

fact you are lucky your neurologist diagnosed you early. I was misdiagnosed

in 1976 as having MS. I consistently and very very gradually went down hill .

I believe in 1976 technology could not diagnose PLS as easily as they could

in 1987 when I was finally diagnosed PLS. Ironically one of my Real Estate

clients was a neurologist and he noticed my inability and asked if he could

put me thru some tests. I agreed and was admitted for three days of endless

rigorous tests. He diagnosed PLS after about three months. It was then

confirmed by Cleveland Clinic.

One thing you got going for you is PLS does not affect the brain. If I can

give you any advice it would be bb careful of falling. Do what you can do as

long as you can do it. Do not look for a pot at the end of a rainbow, but

also do not give up hope. Perhaps before you get to my stage there will be a

cure or an approved medication or therapy. At present there are none of

these. Naturally there always and always will be someone offering a snake

oil. Just be careful what you put in your body. Watch your diet and ask your

doctor about vitamins.

Joe Alberstadt

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April 9, 1999

Hi Bonnie:

My name is Trish, and I agree completely with Doug-- Every PLS case is unique.

My husband is 43 years old and has had PLS since his early twenties. His

condition is mild compared to many we've meet. He does need a cane and his

balance is unsteady, partially because of the baclofen, partially because of

the disease. But his upper body is very strong, and at the present time is

not affected at all. We do not live in fear of tomorrow, but just enjoy today.

We wish you the very best-

April 9, 1999

Bonnie,

Recently I saw an article by a guy who has been dealing with people with

PLS for around 30 years and in it he stated that in his opinion there

were two different conditions, both of which ended up being diagnosed as

PLS although in actual fact the underlying biochemical abnormality in

each case is different. The last few months in particular through

PLS-FRIENDS and Joe's newsletter have exposed me to descriptions from

many people of their symptoms and progress and from those descriptions I

now agree with his opinion.

What he calls Type 1 PLS is basically a very slowly degenerating

condition which has no bulbar symptoms i.e. does not affect speech,

swallowing etc.. Type 2 on the other hand normally affects speech by

around the 3rd year and typically progresses more rapidly. I have Type

2 as my speech began to be affected by around 2.5 years after my first

symptoms, deteriorated quickly around the 3.5 year mark and has slowly

deteriorated since then to the point where now 7+ years after first

symptoms my voice has very little volume and most of the time even my

family struggle to understand me. The rapid deterioration in my speech

at around the 3.5 year mark I attribute to taking high doses of OPCs

(antioxidants) for about three months at that time as I have since read

on several occasions that high doses of OPCs can be harmful for people

with neurological conditions - that certainly seems to fit in my case.

On the other hand I have been taking smaller amounts of a mix of other

antioxidants for around 2 years now and for the last 18 months or so

feel that in some ways I have actually improved, in most I am about the

same and only my speech (and possibly swallowing) have very, very slowly

worsened. I am fine on solids but can only sip fluids or I end up

choking. I am now 44 and for the past 3+ years have been using a

walking frame around home and work and a wheelchair if we go somewhere

likely to involve much walking or uneven ground.

There are others on this list and elsewhere whose symptoms also seem to

fit a typical 'Type 2' diagnosis and from what I have seen the remainder

seem to fit a typical 'Type 1' diagnosis.

To me one very important thing, as I have seen others also say, is to

try to keep a positive outlook on life. I had been an active sport

oriented person pre PLS and whilst at the moment it may be difficult for

you to believe that one can accept the limitations placed on a person by

PLS, it is possible and one can still enjoy life. I went through a very

low period for a month or so after my diagnosis but then accepted the

fact that things would change and vowed to do what I could to try to at

least slow my progression down. For the first few years I was working

in isolation and felt I was the only person in the world with PLS, but

now with the Internet and all the wonderful people with PLS I have met

that feeling has long since disappeared. I know that when I was first

diagnosed I believed that life with the sort of limitations I now have

must be terrible but now I know that is not the case if you have a good

attitude and I probably enjoy and appreciate each day more now than pre

diagnosis.

All the best,

--

,-._|\ Covington

/ Oz \

\_,--.x/

v

April 10, 1999

& Bonnie this is a very intelligent summation. I shake your hand

.It's impossible to put 21 yr. experience with having PLS in a summation.

The way people handle themselves certainly has an effect on the speed of

progression of symptoms of PLS. An unknown recipient of this discussion said

her husband had symptoms 20 yr. and is now in his 40's.Her accretion of don't

worry about the future-I could not agree more heartedly with. Twelve years

when I was diagnosed PLS like all you I had never heard of PLS what's more my

neurologist had no other case, probably similar to most of you.Even though

for 11 years before my PLS diagnosis, I probably had PLS .The reason I say

that is because in 1977 I was diagnosed M/S by two neurologists. Obviously a

misdiagnosis.The PLS diagnosis did not come easy after a year though it was

confirmed at Cleveland Clinic.Anyway getting to the point and advice to you

Bonnie. Go on living, forget you have PLS do as your neurologist said " what

ever you want " . A positive attitude , a willingness to release any fear of

the future, and be satisfied with yourself.I went thru a short period of

depression as did and as all of you did or probably will. Don't worry

because that's normal, and you will survive. Look at s web under

recommended books. One got me through and is still getting me through. I'm a

better person mentally, having learned to accept this disease,leave in the

hands of God and go on with life.By all means be thankful for what you have

and play the hand dealt you to the best of your ability. I was alone 20 years

with PLS before ever talking or writing anyone about it.Today after a couple

years of NORD contacts and s web and Marks Onelist and my own

interactive communication letter called Synapse, I have made a commitment to

help any fellow PLS'er cope by being there for them.

An attachment showing the best medicine. Stay calm and pleasant.

Sincerely Joe Alberstadt

December 19, 1999

My Dad was diagnosed with PLS, He has slurred speech and chokes on food

sometimes and has excess saliva. I don't know much about this disease, is

there anything to help him. He hates not being able to talk right. His

speech and swallowing is what problems he is having with PLS. Will he not be

able to speak in the future? And will he be able to eat and drink or will he

have to be fed through his stomach? Any info would be appreciated. He is 75

yrs old. Thankyou, Jill

December 19, 1999

Hi Jill,

If you read my message to kah which I mailed a few minutes before your

message you will see that I have the same symptoms as your father. I have

been following the PlsPals site since May and this site since last month and

I do not recall anyone who could not speak or swallow at all. However,

about a year ago I corresponded with a women who could not speak and did

have a stomach tube installed so PLS can progress that far. Personally, I

am mentally preparing myself for that possibility. The person I

corresponded with said she copes with it quite well.

PLS

>From: Jac028@...

>

>My Dad was diagnosed with PLS, He has slurred speech and chokes on food

>sometimes and has excess saliva. I don't know much about this disease, is

>there anything to help him. He hates not being able to talk right. His

>speech and swallowing is what problems he is having with PLS. Will he not

be

>able to speak in the future? And will he be able to eat and drink or will

he

>have to be fed through his stomach? Any info would be appreciated. He is

75

>yrs old. Thankyou, Jill

>

>>

December 22, 1999

Bob,and a very Merry Christmas to you and maryjane!!!!!!

.

December 22, 1999

From: C828@...

Bob,and a very Merry Christmas to you and maryjane!!!!!!

.

December 23, 1999

Dear jac,

PLS is described as " the falling disease " for most of us. There are two

types described, which you have probably already heard about by the time you

get this message. One deals mostly with the legs and the other with speech

and swallowing. Some of us have both problems. Your dad sounds as though he

is having both. If he " stumbles " very often, get a walker. It doesn't cost

as much as ER visits and plastic surgery to the face and casts for broken

bones. Make his living area as safe as possible so when he does fall, it

will not be against something sharp, such as a counter top or end table.

Also, if any steps don't have hand rails, put some in. There are also handy

devices, such as a toilet stool bar that attaches to the screws at the back

of the sear and covers both sides of the stool, giving support while sitting

and getting up and down. Grab bars in places such as the shower or tub and

the kitchen also help. Hope this helps. Mike Gray.

jac028@... wrote:

> From: jac028@...

>

> Does everyone with pls have problems with stumbling?

> My dad seems to have problems with his legs falling asleep.

> But mostly its his speech and swallowing problems so far. So does

> everyone end up with speech problems or does it effect some with

> leg problems only? And does speech therapy really help strengthen

> the throat muscles? My dad drinks some kind of vitamin stuff to help

> strengten the throat muscles but I don't think it's working.

>

December 23, 1999

Dear Kathleen,

I have been wondering how you have been getting along. Were you going to have

surgery or just some tests. I know your back is in bad shape along with your

having PLS. I do remember that you are in my prayers, too. Hope you are doing

well. Merry Christmas. Mike Gray.

Kathleen Hillary wrote:

>

> when my pls first started i stumbled a lot and had an strange gate. at

> first they thought maybe i had ms. i have never had problems with speech

> and what problems i have with swallowing i think is mostly related to

> dry mouth. i used a cane, crutches and now a wheelchair and scooter. i

> use to try different things - medications, experimental drugs, etc. but

> don't like to do that much anymore because i am afraid of losing what

> abilities i have left. i'm not as adventurous as i used to be. i had to

> go to a wheelchair full time after i broke my right leg in 1989. they

> had to put a rod and lots of pins in because the break was so severe.

> the rod and pins are still in my leg. i was in a rehab unit in hopes of

> getting back on my crutches again but it didn't work. i also use a

> scooter for getting around. i had to give up my car last year because it

> didn't have power steering and my arms had gotten to weak for me to feel

> comfortable driving. i also can't get physical therapy paid for because

> there is not any improvement and medicare/medicaid won't pay unless

> there is improvement.

> take care. i will add your father and your family to my prayer list. i

> hope you all have a wonderful holiday.

> kathleen hillary

>

> jac028@... wrote:

> >

> > From: jac028@...

> >

> > Does everyone with pls have problems with stumbling?

> > My dad seems to have problems with his legs falling asleep.

> > But mostly its his speech and swallowing problems so far. So does

> > everyone end up with speech problems or does it effect some with

> > leg problems only? And does speech therapy really help strengthen

> > the throat muscles? My dad drinks some kind of vitamin stuff to help

> > strengten the throat muscles but I don't think it's working.

> >

>

December 23, 1999

dear mike,

thank you for your concern. the doctors decided that i was not ready

mentally, emotionally or physically so the carpal tunnel surgery has

been put off. the rheumatoid arthritis isn't cooperating either but

there is a new medication out for that and i hope the doctor will try

using it on me next month. i don't worry about the back because there is

nothing that can be done about it and so far the deterioration has been

very slow. so...................

i also remember you in my prayers. i think that we are all survivors so

believe we will make it. i am attempting to gain some christmas spirit

by making cookies. i'm not sure it is working but it sure smells good in

here.

take care. i hope you have a wonderful holiday. kathleen

Mike Gray wrote:

>

> Dear Kathleen,

>

> I have been wondering how you have been getting along. Were you going to have

> surgery or just some tests. I know your back is in bad shape along with your

> having PLS. I do remember that you are in my prayers, too. Hope you are doing

> well. Merry Christmas. Mike Gray.

>

> Kathleen Hillary wrote:

>

> >

> > when my pls first started i stumbled a lot and had an strange gate.

at

> > first they thought maybe i had ms. i have never had problems with speech

> > and what problems i have with swallowing i think is mostly related to

> > dry mouth. i used a cane, crutches and now a wheelchair and scooter. i

> > use to try different things - medications, experimental drugs, etc. but

> > don't like to do that much anymore because i am afraid of losing what

> > abilities i have left. i'm not as adventurous as i used to be. i had to

> > go to a wheelchair full time after i broke my right leg in 1989. they

> > had to put a rod and lots of pins in because the break was so severe.

> > the rod and pins are still in my leg. i was in a rehab unit in hopes of

> > getting back on my crutches again but it didn't work. i also use a

> > scooter for getting around. i had to give up my car last year because it

> > didn't have power steering and my arms had gotten to weak for me to feel

> > comfortable driving. i also can't get physical therapy paid for because

> > there is not any improvement and medicare/medicaid won't pay unless

> > there is improvement.

> > take care. i will add your father and your family to my prayer list.

i

> > hope you all have a wonderful holiday.

> > kathleen hillary

> >

> > jac028@... wrote:

> > >

> > > From: jac028@...

> > >

> > > Does everyone with pls have problems with stumbling?

> > > My dad seems to have problems with his legs falling asleep.

> > > But mostly its his speech and swallowing problems so far. So does

> > > everyone end up with speech problems or does it effect some with

> > > leg problems only? And does speech therapy really help strengthen

> > > the throat muscles? My dad drinks some kind of vitamin stuff to help

> > > strengten the throat muscles but I don't think it's working.

> > >

> >

>

December 23, 1999

HI KATHLEEN:

HOpe you have a great holiday, a nd YES, do keep trying to keep those

old spirits up. That is really the best thing we can do for ourselves.

Regarding

your back. I too have a bad back in addition to PLS. I have just yesterday

had my 2nd epidural for back and R. leg pain. They give me a cortisone shot

between my L4 & L5 vertebrae, and the last time it took care of my pain for

3 months. This time, my anesthesiologist is hoping for 4-6 if I behave

myself.

Take care, and I hope 2000 is much better for all of us!

Everyone............I love yah all! MERRY CHRISTMAS & HAPPY 2000!

Laurel

> ----------

> From: Mike Gray[sMTP:magray@...]

> Reply To: PLS-FRIENDSonelist

> Sent: Thursday, December 23, 1999 7:30 AM

> To: PLS-FRIENDSonelist

> Subject: Re: pls

>

> Dear Kathleen,

>

> I have been wondering how you have been getting along. Were you going to

> have

> surgery or just some tests. I know your back is in bad shape along with

> your

> having PLS. I do remember that you are in my prayers, too. Hope you are

> doing

> well. Merry Christmas. Mike Gray.

>

> Kathleen Hillary wrote:

>

> >

> > when my pls first started i stumbled a lot and had an strange

> gate. at