Re:lucky to ONLY HAVE PLS!

[Guest guest]

I am not trying to get you in trouble or " holler " at you Rita.

Honest

I am not. I just think this issue needs to be clarified. Your

statement about being lucky to only have PLS really confuses me. It

might be that you mean to say you are lucky your PLS is stable and

hasn't progressed. If that is what you mean please ignore the rest

of

what I have to say.

PLS is a progressive disease that causes gradual loss of the limbs,

arms/legs and loss of speech. It gradually progresses over a period

that is much slower than ALS, usually around 20 years. The end

result of the progression is a person that is unable to walk, talk,

or

feed themselves. A lot of people start getting symptoms of PLS later

in life and die from other causes prior to being totally dependent on

others for their care. Those that acquire this disease earlier in

life usually reach a point when they are totally dependent on others.

Some people are fortunate enough to have extremely slow progression.

Others are fortunate enough to go through a sort of remission. The

same is true for ALS. But reality is, most follow the above

progression resulting in quadraplegia along with being unable to

communicate. Scary picture? I'm not trying to be a doomsdayer or

scare

anyone, just stating facts. To say you are lucky to " only have PLS "

makes me wonder if your neurologist ever explained the prognosis of

this disease to you. Again, I apologize if you meant you feel lucky

to have a mild case of PLS or you feel lucky yours is in remission. I

hope and pray that your PLS stays as it is and doesn't progress

further. And I hope and pray that the rest of us will be as lucky as

you have been. You seem to be an extremely nice, upbeat person that

is trying to keep a positive attitude and help others do the same.

But I just have a problem with the use of the words " lucky " and

" only "

when referring to PLS. Rita, we need your positive attitude in this

group so please don't get upset with what I've said. I probably

should

have just let this go. I am certain you didn't mean to insinuate

that

PLS is not a serious, devastating disease, possibly you were just

trying to point out that some people also have a rough burden to

bear?

> Really Ronnie:

>

> I have never experienced any type of problems with people

commenting

on

> how I walk. All the people I am in contact with, marvel at what I

> accomplish, and my being up all the time. I hope I didn't offend

anyone

> with the phrase " crip " , I have really tried to be a good girl, and

have

> not been hollered at in quite a long time.

>

> & I went out to dinner with some friends yesterday. Jim is a

quad,

> and married to a gal with polio. They have been married 4 years.

They

> were married in the chairs on TV in Boston. We were 7, and we were

in a

> busy restaurant in a mall. Thats when I watch people. Jim has to be

> hand fed by his wife, and she takes care of him first, and usually

by

> the time she gets to eat, her meal is cold. I heard one lady

sitting at

> a table near us, " isn't that wonderful " . So I don't know why

people

get

> so up tight about how they walk or talk, we are all God's kids. And

> whenever I am with Jim and his wife, I feel so lucky to ONLY HAVE

PLS!

>

> Rita

[Guest guest]

, I'm not yelling at you either but, like Rita, I too feel lucky to

only have PLS! I could have been luckier and been one of those 90 year

olds who has never been hospitalized but I wasn't but I still feel lucky

that I got a few more good years rather than the rapid downhill with

ALS. This does not deny that the future is pretty awful; only recognizes

that I appreciate what I have now. I don't have time to worry about how

fast or slow I will fail- I can only appreciate that it will probably be

slower than someone with classic ALS. Today has enough problems that I

don't need to borrow tomorrow's. Today I feel lucky but not

stable. Thanks, Lavon

At 11:48 PM 05/20/2000 +0000, you wrote:

>It

>might be that you mean to say you are lucky your PLS is stable and

>hasn't progressed. If that is what you mean please ignore the rest

>of

>what I have to say.

>

>PLS is a progressive disease that causes gradual loss of the limbs,

>arms/legs and loss of speech. It gradually progresses over a period

>that is much slower than ALS, usually around 20 years. The end

>result of the progression is a person that is unable to walk, talk,

>or

>feed themselves.

[Guest guest]

:

What I was referring to, if you read my letter clearly, I had dinner

with friends. One of the people was a school friend of mine, who at 16

dove into a pond and broke his neck, and has been a quadriplegic for

almost 50 years, married to a gal with polio (since she was 19). They

met in a rehab center, and were married 42 years ago. He is paralyzed

from the neck down, and paints by mouth. They are both an amazing

devoted couple. When ever we are with them my problems seem small. And

when we were at the restaurant she had to cut his food and feed him like

a baby, but she did it with love. And a person sitting near our table

thought it was wonderful that Fay, his wife put him first (while her

food got cold). Every time I leave them, after a visit, I alway say

" Thank God, I only have PLS " . As you get to know me better, you will

find I can always find a positive in a negative situation. I am sorry

if that offends people, but that how I survive and live with this

disease.

I don't consider myself as having a mild case of PLS, I just had to

adjust my life style accordingly, and accept this disease as best I can.

I have a wonderful neurologist, who because so little is known about

this disease, has been very upfront with me, does not know what is down

the road for any of us. Yes, some will progress faster than other's and

we don't know why. Maybe it's what I do on a dailey basis, that is

keeping me going, I just don't know. My life is full, and I don't have

time to worry about what other people think. I know what works for me,

and would hope that other people would be able to understand, that this

is who I am, take or leave it.

I am having dinner with a friend on Monday, who has MS. I met Bill 15

years ago, and you would never know he had any problem at all. In fact

my symptoms were starting to show, and would kid each other about it.

Now Bill is confined to a wheel chair and is failing fast. He is so

frustrated and his spirits are really down. he said " he needed a visit

from me " , can you imagine??? I will leave his company and once again

say " thank God I only have PLS " , that the way I feel!

Sorry to get so carried away, but when I get " hollered at " (even a

little) have to fight back.

, please don't be upset with me, I know there are many other

people worse off than me, and there is nothing I can do about that. We

all have crosses to bear, I guess mine is not all that heavy for me.

Rita

[Guest guest]

Lavon:

You said in a few words, what took me forever to say. Thanks for

simplifying for me. I always know how I feel, but find it hard to put

into words (thats how I get in trouble),

Rita

[Guest guest]

Hi PLS-Friends!

I think that statistics of progression and life expectancy in PLS and

ALS are not so important for the well-being. Anyway for my mental

cases. Although my condition is not the best, I am convinced of my

life task. A so one statistic is important for resarch of treatments

and curing. We peoples are constantly individuals and we have

individuals courses of the diseases. My friend is a scientist of

cellbiology. Now, he is making his title (doctor) of motoneuron

disease. Although he is scientist, he is quite agree with me.

The last three weeks ago, I did have a infection of the lungs with

very congestion of secrets because I have swallowed the wrong way. I

was nearly suffocated. Now I am very happy because I am at the good

way.

One week ago I did have an EMG of tongue. Incidentally, it was so

painfull!!!!! Now I must wated of the results (exclusion ALS), but

the neurologist said me that a diagnostic of PLS is very difficult

because the magnetic stiumulations of brains are very unreiable and

is always a diagnostic of exlusion. He recommended me to contacting

other PLS peoples in US or Canada because in Switzerland we have

maybe only 3 concerned persons. Maybe I am the first? We don't know.

I think, if I have ALS then my course, progression and the nature is

very rare because I have this disease since 14 years ago. (Now I am

28!). If I have PLS it is the same. The course and progression is

then sure slowly but nowadays very aggressiv. (I am on a non-invasive

breathing assistant at night and I am in a wheelchair.)

Nevertheless, I am very cheerful and happy. I have a lot of friends,

I am in a very succsessfully wheelchair-danceformation and my

paintings are known in our region.

You all are my friends too and I am suprised of your correspondending

and helping yourselves. Thanks for all!

Have a good day

Sonja

PS: I have any problems with my English. Excuse me!

> > > I'LL BET JOE WOODRUFF WOULD TRADE HIS FULL BLOWN ALS MONSTER

FOR

> > PLS!!

> >

> > I bet he would too, but don't forget, PLS eventually does the

same

> to

> > a person that ALS does, just slower. I'll admit that some PLSers

> > don't have what appears to be full blown PLS, call it type 1 vs

> type

> > 2, call it whatever you want. There does indeed seem to be two

> > distinct groups represented in our PLS world. Those that have

leg

> > only symptoms and those that have full blown - legs, arms,

bulbar,

> > fatigue, breathing, etc. The ones with the full blown will

> > eventually end up just like an ALS patient, the only difference

is

> > time. Since most are in the 50's when they notice PLS starting,

> they

> > have a good chance of dying from something else before they reach

> the

> > stage of being totally incapacitated. Those that develop PLS

> earlier

> > in life and have the bulbar symptoms most likely will live long

> > enough to be in Joe Woodruff's situation. Joe Alberstadt and

Kathy

> > are good example of what happens to a PLS patient after 20 years

of

> > this disease. They are both remarkable in their attitude and

> drive.

> > I think people forget how difficult it is for them to accomplish

> what

> > they do. Walk a mile in their shoes, or rather ride a mile in

> their

> > chairs, imagine a day in their lives, be dependent on someone

else

> to

> > bath and dress you, feed you, shop for you and talk for you. (I

> > realize neither Joe nor Kathy require that much care at this

time,

> > I'm being dramatic, but not unrealistic.)

> > I am on this " Awareness " kick because I think sticking my

head

> > in the sand and hoping and praying my PLS won't progress too

> rapidly

> > or too much is as foolish as a person spending their money willy

> > nilly and never being concerned about their retirement. No on

> wants

> > to dwell on the negative " what if " but to be prepared and to do

> what

> > you can to make a difference, while you still can, is the smart

and

> > responsible thing to do.

> > If I wait for my condition to deteriorate before taking

> action,

> > it will definately be too late. I know there is nothing out

there

> > now, but that CAN change. I want to help make it change.

> > We all need to do what we can. The research fund can be a

> start

> > for us. If we don't initiate the research, no one else will.

> Every

> > little bit can and will help. Please don't think because our PLS

> is

> > not quite as horrid as ALS, we don't need to find answers and we

> > should just quietly accept our deterioration just because it is

> > slower. Maybe the answer to ALS treatment is in studying PLS

> > patients! Maybe we can find a way to slow our progression to a

> point

> > that it won't ever be a big deal in our lives. Think of

diabetes.

> > It can be successfully managed in most patients. It doesn't have

> to

> > shorten a person's life or cause disabilities. It quite often

does

> > even with medical treatment, but most diabetics can lead a fairly

> > normal life. In a few years, hopefully, ALS and PLS will be like

> > diabetes. Not a diagnosis you want to get but one that is

> treatable

> > and manageable for most. Let's make it happen!

> >

> >

> > ------------------------------------------------------------------

--

> ----

> > Failed tests, classes skipped, forgotten locker combinations.

> > Remember the good 'ol days

> > http://click./1/4053/6/_/532384/_/959973111/

> > ------------------------------------------------------------------

--

> ----

> >

> >

> >

> >

> >

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[Guest guest]

Sonja:

What a terrfic attitude. to me (having this disease for 20 years),How

you deal with it mentally is half the battle. You can take all the

pills, and exercise till the cows come home, but you have to stay

healthy mentally.

God Bless!

Rita