Re: question

[Guest guest]

Jane,]

I have really bad days also. Some days I cry at anything and can't stop. The

feeling of desperation hopelessness is too strong for me to overcome. I am

not always positive. I try. The whole thing is unbelievable yet.

Sherry

Re: QUESTION

I have a really hard time keeping the positive attitude that many of you

have. And I can't seem to concentrate the bad times into something I can get

[Guest guest]

Dear Jane D. from Gainesville,

If after awhile of trying to stay positive, and the blues just don't go away, it

may be that you are suffering from some depression. I believe that is quite

common in several of us in the PLS group. Right now, I am not on a prescription

antidepressant, but I have been off and on. Mine seems to be seasonal, but so

far this winter season, I feel pretty darn good. Dont' let it go too long

before you talk with your doctor about it. Either your neurologist or family

doctor can help you with this.

Take care, and God bless,

Laurel

Re: QUESTION

I have a really hard time keeping the positive attitude that many of you

have. And I can't seem to concentrate the bad times into something I can get

through and then move on. Every morning finds me in a haze of pain that

takes a while to dissipate.

Part of the problem is that the downward spiral continues at a rapid rate.

And my dx of PLS is tentative. Sherry I really admire the way you deal with

your dx of ALS.

Well enough feeling sorry for myself for now!

Jane D. in Gainesville

[Guest guest]

Hi Jane,

I also have a hard time keeping a positive attitude when I'm going downhill.

I seem to have spells when I do really well. I'm on top of the world and

enjoying life to the fullest. Then I start to slide downhill and my

attitude goes downhill just as fast. It's hard not to be depressed when you

can hardly make it out to the kitchen to get a cup of coffee! So I live for

the good days. And I try to put as much into them as I can.

On the bad days I spend a good deal of time in my bed working on the

computer, trying to figure out ways to advance research for this stupid

disease. I am NOT happy to have PLS. I am grateful I don't have ALS. I am

grateful I don't have breast cancer. I am grateful I don't have any number

of diseases. But I will NEVER say I am happy to have PLS. IT SUCKS!!!!!!

Now, I do feel better! :0)

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

Hi Jane,

I say " ditto " to 's message. Whether we admit it or not, we all

have our down times. It is my humble opinion that it is not normal to be

" up " all the time. That seems like denial. Let's face it, our lives have

changed and will continue to do so. Even healthy people grieve the loss of

their youth and all the good things that accompanied it. is glad

that she doesn't have cancer. Well, I have that, too, in addition to PLS

and what seems like a grocery list of maladies and pain is an old friend,

now. My priorities have changed as my abilities have changed, but life

remains worth living. I wish you peace and comfort. This group is a Super

Picker Upper!!

Dolores

Re: QUESTION

> Hi Jane,

> I also have a hard time keeping a positive attitude when I'm going

downhill.

> I seem to have spells when I do really well. I'm on top of the world and

> enjoying life to the fullest. Then I start to slide downhill and my

> attitude goes downhill just as fast. It's hard not to be depressed when

you

> can hardly make it out to the kitchen to get a cup of coffee! So I live

for

> the good days. And I try to put as much into them as I can.

> On the bad days I spend a good deal of time in my bed working on the

> computer, trying to figure out ways to advance research for this stupid

> disease. I am NOT happy to have PLS. I am grateful I don't have ALS. I

am

> grateful I don't have breast cancer. I am grateful I don't have any

number

> of diseases. But I will NEVER say I am happy to have PLS. IT SUCKS!!!!!!

> Now, I do feel better! :0)

> Thomson

> Solana Beach, Ca

> Visit www.als-pls.org

> and www.geocities.com/mdmfoo/pls.html

>

>

>

>

>

>

[Guest guest]

I'll attach a copy for you.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

Re: QUESTION

> Hi and Dolores,

>

> Thanks for your replies! This is a great group. is there a

place

> on-line to read that article about PLS (deos it exist?)? I think I found

it

> once but a subscription was required.

[Guest guest]

Jane:

I know it's tough, but the worry and stress you put yourself under can

only make matter's worse, ONE DAY AT A TIME.!

Rita

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

,

What an inspiring letter. This is certainly a keeper. Would you mind if I

post it on the PLS Data page?

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

Hi ,

It is out there. I have no problems whatever with it being posted anywhere.

Cheers

Jaycee (aka )

Notice to all! I will be moving to my usual nickname from now on, cos I am

feeling right at home due to the warmth and friendship so readily offered by

all in the group.

Re: QUESTION

> ,

> What an inspiring letter. This is certainly a keeper. Would you mind if

I

> post it on the PLS Data page?

> Thomson

> Solana Beach, Ca

> Visit www.als-pls.org

> and www.geocities.com/mdmfoo/pls.html

>

>

>

>

>

>

[Guest guest]

I read that study some time ago, so I'm fuzzy on the details. My vague

recollection is they were cataloging abnormalities in various parts of the

brain after autopsy. That may not be right, but see if it makes sense in

context.

Don P.

question

Hi Gang,

I was reading the study " Does Primary lateral sclerosis exist? " that I

recieved

from and had a question. Under the topic of clinical

characteristics,

was Tetra-pyramidal syndrome. Each of the 20 patients had that. I tried to

look

it up on the net, but couldn't find what it was. Does that mean hyper

reflexes?

Also what is Prefrontal and or premotor dysfunction? Pardon my ignorance,

but

I woun't know if I don't ask.

Thanks my friends,

Cookie

[Guest guest]

,

I feel the same way that you have described here in your letter. I have had

Occupational and Physical therapy come out..they really didn't know what they

could do for me since I had already gotten just about everything I needed on my

own. I had been to so many neruologist, Drs., had so many tests. When I

was told I had ALS, I was all alone...I did not take anyone with me...the

neurologist came and went many times.. I had no one to talk to later, I tried

to drive home. It was awful. I do believe I am going through the grieving

process for my family. I have just recently had my medications changed to help

with the emotion lability and depression. The ones I were on , just weren't

getting it. I have recently been to the MDA clinic. I wish I would have

gone there before going to the ALS clinic. They have been so much better.

, there is another list that I am on that is " living with ALS @ Yahoo " ...you

can join that too. They are very caring and helpful also...

Between the two groups, they keep a person going and keep you proactive in your

choices.. Reading your email is exactly the way I feel also.

Thanks

Sherry

Re: QUESTION

Sherry

[Guest guest]

Rita,

This is like a new day to me. I do feel better and am back to old self.

When you see these children make mistakes and what a wonderful life

that they could have. Just remind

them look at me do you want to be like I am now. It just might make them think a

little. Best of luck

on her. You know I can always count on you to perk me up.

Jane Anne King

Re: QUESTION

:

Words of wisdom.

Jane Anne: Please try to keep your sunny side up (if you have one). I

have been very lucky about having PLS, I haven't had many " pity days " ,

don't know why. The things that get me down are not PLS but weather, my

weight (no comment C), stupid things my children and grandchildren

do, thats what drives me crazy. I have a situation now with my oldest

granddaughter (16), she got involved with the wrong people, and made

bad decisions and has had many chances to turn her life around, well

they locked her up last week, for 9 months for something o do with

drugs, but it was her choice and she knew what was going to happen. I

am trying not to get stressed out over it, I pity her, she has her whole

life ahead of her. My point it we all have choices and mine is to live

with this stupid disease and not to let it get to me, so far so good. I

know it's not easy for some people as it is for other's. So hang in

there!

Rita

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

When you worry it's like sitting in a rocking chair, it gives you a good

ride, but it doesn't get you any where.

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

[Guest guest]

Jane Anne:

So good to hear from you and thanks for the compliment, makes me feel

good for you.

Rita

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

Hi Sherry

Thanks for the tip. I am glad that I could share some of my thoughts with

you.

All the best

Jaycee

Re: QUESTION

>

>

> Sherry

>

>

>

>

>

[Guest guest]

Jane,

I sometimes have times it is hard for me but we have to go on

because we really don't want to continue being DOWN. You can do it I know you

can.

Jane Anne King

Re: QUESTION

I have a really hard time keeping the positive attitude that many of you

have. And I can't seem to concentrate the bad times into something I can get

through and then move on. Every morning finds me in a haze of pain that

takes a while to dissipate.

Part of the problem is that the downward spiral continues at a rapid rate.

And my dx of PLS is tentative. Sherry I really admire the way you deal with

your dx of ALS.

Well enough feeling sorry for myself for now!

Jane D. in Gainesville

[Guest guest]

Hi Cookie,

I think that means the people had symptoms in 4 regions of they body

(tetra).

I can only guess that the pyramidal refers to ascending, but that is a guess

only. Maybe one of the others can help with that.

Prefrontal and premotor are parts of the brain. I'm not real sure on the

actual parts.

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

Hi folks! tetra refers to 4 limbs- 2 arms and 2 legs. Pyramidal refers to

specific white matter tracts with specific motor symptoms (as opposed to

extrapyramidal). Honest, I meant to reply earlier :-) Lavon

At 03:43 PM 2/26/2003 -0800, you wrote:

>Hi Cookie,

>I think that means the people had symptoms in 4 regions of they body

>(tetra).

>I can only guess that the pyramidal refers to ascending, but that is a guess

>only. Maybe one of the others can help with that.

>Prefrontal and premotor are parts of the brain. I'm not real sure on the

>actual parts.

> Thomson

>Solana Beach, Ca

>Visit www.als-pls.org

>and www.geocities.com/mdmfoo/pls.html

>

>

>

>

>

>

>

[Guest guest]

Hello Friends,

I was wondering if I can ask you all a personal question. I will ask and

if you don't want to answer I will understand or maybe you can e-mail me

personally. Do any of you folks have to cath. yourselves or do you have a

folly in? I know some have mentioned that they have some weakness in the

bladder. cannot go on his own at all anymore. I was told this was due to

the muscle relaxers he is on. I also wonder if any of you have problems with

constipation to the point that you have to use enema's? Yes, I do mean more

then one. Some mornings I have to give as many as 5 to 7 just so he can

go. The reason I am asking is that I wonder if these things are common with

PLS? I just read a story about a lady with ALS who had 2 surgeries done due

to these problems and her story sounded just like what and I go thru

sometimes. So I guess these things are that uncommon with ALS. I just wonder

if they are with PLS. Thanks for any information you can share. Shirley

[Guest guest]

Thanks Galen,

I have heard of the condom caths. the problem is they just collect the

urine when you go. But if you can't go on you own they won't due one much

good. I would think they would save one a lot of money on the adult diapers

if needed. But not what I was looking for I am just wondering if anyone else

has these same problems? Just still trying to figure out if my husband has

ALS or PLS. I just read a message on the ALS postings that sounded just like

my husband. This lady had 2 surgeries for these problems the first was to

have a pubic cath. in and then she also had a colanostome ( spelling ) to

deal with her bowl issues. So I am really just asking if any PLSers have

these kind of bladder or bowel problems that would push you to have these 2

surgeries done? Thanks Galen for your quick response. Shirley

[Guest guest]

This is kinda weird. Another group that I read just had a big discussion

about condom catheters and where to get them. The group was cave divers.

They spend hours underground and underwater and build up hours of

decompression obligation which requires them to stay in " drysuits " (too

cold for the wetsuits commonly associated with SCUBA divers) often for 8

hours or more. I didn't pay much attention at the time (I don't dive) but

I'm sure I can dig up the messages if it's any help.

>Hello Friends,

> I was wondering if I can ask you all a personal question. I will ask and

>if you don't want to answer I will understand or maybe you can e-mail me

>personally. Do any of you folks have to cath. yourselves or do you have a

>folly in? I know some have mentioned that they have some weakness in the

>bladder. cannot go on his own at all anymore. I was told this was due to

>the muscle relaxers he is on. I also wonder if any of you have problems with

>constipation to the point that you have to use enema's? Yes, I do mean more

>then one. Some mornings I have to give as many as 5 to 7 just so he can

>go. The reason I am asking is that I wonder if these things are common with

>PLS? I just read a story about a lady with ALS who had 2 surgeries done due

>to these problems and her story sounded just like what and I go thru

>sometimes. So I guess these things are that uncommon with ALS. I just wonder

>if they are with PLS. Thanks for any information you can share. Shirley

>

>

>

[Guest guest]

Shirley...I disagree with Rita...you can ask for money all you want...you're

just not going to get it!

Cookie

[Guest guest]

Oh, Cookie, you just killed my whole image. Sob Sob!!!

Rita

Luv & Hugs!

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

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

[Guest guest]

HI SHIRLEY,

I READ THE SAME LETTER.

I TELL YOU ONE THING I WOULDN'T WANT DON TO HAVE A COLOSTOMY IF HE CAN POSSIBLY

NOT HAVE ONE. I HAVE HAD TO MANY BAD EXPERIENCES WITH THEIR CARE WHILE ON

OUTINGS WITH RESIDENTS FROM THE NURSING HOME. AND I DON'T KNOW ABOUT YOU BUT I

SURE DON'T WANT TO BE SOMEWHERE AND HAVE A BAG BREAK AND THE MESS THAT GOES WITH

IT. THE ONES I HAVE WORKED WITH STINKS AND THERE IS NOTHING THAT TOTALLY GETS

RID OF THAT SMELL. IT'S BAD NEWS. IF YOU ENJOY GETTING OUT YOU MAY WANT TO GO

WITH STOOL SOFTENERS AS WELL AS THE ENEMA'S OR POSSIBLY TRAIN THE BOWL WITH

SUPPOSITORIES. WE HAVE HAD TO TAKE A LADY BACK HOME ON A TWO HOUR BUS RIDE

WRAPPED IN BLANKETS BECAUSE HE BAG BURST. I HAVE HAD TO CLEAN PEOPLE FROM HEAD

TO TOE BECAUSE THE BOTTOM CAME OPEN AND THEY LAID IN IT IN BED. FOOD CHANGES

CONSISTENCY. I HOPE YOU DON'T HAVE TO GO THAT WAY. AS FAR AS THE SUPER PUBIC

IS CONCERNED. I HELPED CARE FOR MANY QUADS AND THERE IS NO WAY THAT THEY WANT

TO HAVE A SUPER PUBLIC. THEY PREFER TO BE CATHED. THE FEW THAT WENT WITH SUPER

PUBIC BOUGHT A PROBLEM WITH INFECTIONS MUCH WORST THAN WITH THE CATH.

THIS HAS BEEN MY EXPERIENCE WITH MY WORK AND I WOULD TALK TO SOMEONE WHO HAS ONE

BEFORE GOING THAT ROUTE. I JUST HAD TO LEARN TO CATH DON DUE TO A UTI (DOING

MUCH BETTER NOW) HE IS NOT ABLE TO DO IT HIMSELF. HE DOES NOT HAVE ENOUGH SMALL

MUSCLE COORDINATION LEFT TO CATH HIMSELF. I WILL SOON HAVE TO BE GETTING HIM

ADAPTED SILVER WARE. HE IS NO LONGER ABLE TO WALK TO THE BATHROOM IN THE

EVENINGS AND MUST USE HIS W/C. SO FAR HE IS STILL MAKING IT IN THE MORNING WITH

HELP WITH MOVING HIS FEET.

I HAVE BEEN AS OPEN AS I CAN FOR YOU AND THE OTHERS. I FEEL IT IS IMPORTANT

THAT OTHERS NEED TO KNOW WHAT IS GOING ON. DIDN'T YOU SAY JOHN IS ABLE TO CATH

HIMSELF? TRY SOME BOOST IT WILL SUPPLEMENT HIS FEEDING AND KEEP HIS BOWELS

MOVING.

LOVE

BONNIE

[Guest guest]

Bonnie, Shirley, and other interested folks,

I think that a high calorie liquid supplement would help hubby. There are

some that contain fiber and help solve the constipation problem. Look for

Ensure Fiber, Jevity, or Jevity Plus (all made by Ross). Ross is the

company that makes Ensure, so your pharmacy should be able to order any of

these products if they don't have them on hand.

Dolores

Re: question

> HI SHIRLEY,

>

> I READ THE SAME LETTER.

>

> I TELL YOU ONE THING I WOULDN'T WANT DON TO HAVE A COLOSTOMY IF HE CAN

POSSIBLY NOT HAVE ONE. I HAVE HAD TO MANY BAD EXPERIENCES WITH THEIR CARE

WHILE ON OUTINGS WITH RESIDENTS FROM THE NURSING HOME. AND I DON'T KNOW

ABOUT YOU BUT I SURE DON'T WANT TO BE SOMEWHERE AND HAVE A BAG BREAK AND THE

MESS THAT GOES WITH IT. THE ONES I HAVE WORKED WITH STINKS AND THERE IS

NOTHING THAT TOTALLY GETS RID OF THAT SMELL. IT'S BAD NEWS. IF YOU ENJOY

GETTING OUT YOU MAY WANT TO GO WITH STOOL SOFTENERS AS WELL AS THE ENEMA'S

OR POSSIBLY TRAIN THE BOWL WITH SUPPOSITORIES. WE HAVE HAD TO TAKE A LADY

BACK HOME ON A TWO HOUR BUS RIDE WRAPPED IN BLANKETS BECAUSE HE BAG BURST.

I HAVE HAD TO CLEAN PEOPLE FROM HEAD TO TOE BECAUSE THE BOTTOM CAME OPEN AND

THEY LAID IN IT IN BED. FOOD CHANGES CONSISTENCY. I HOPE YOU DON'T HAVE TO

GO THAT WAY. AS FAR AS THE SUPER PUBIC IS CONCERNED. I HELPED CARE FOR

MANY QUADS AND THERE IS NO WAY THAT THEY WANT TO HAVE A SUPER PUBLIC. THEY

PREFER TO BE CATHED. THE FEW THAT WENT WITH SUPER PUBIC BOUGHT A PROBLEM

WITH INFECTIONS MUCH WORST THAN WITH THE CATH.

>

> THIS HAS BEEN MY EXPERIENCE WITH MY WORK AND I WOULD TALK TO SOMEONE WHO

HAS ONE BEFORE GOING THAT ROUTE. I JUST HAD TO LEARN TO CATH DON DUE TO A

UTI (DOING MUCH BETTER NOW) HE IS NOT ABLE TO DO IT HIMSELF. HE DOES NOT

HAVE ENOUGH SMALL MUSCLE COORDINATION LEFT TO CATH HIMSELF. I WILL SOON

HAVE TO BE GETTING HIM ADAPTED SILVER WARE. HE IS NO LONGER ABLE TO WALK

TO THE BATHROOM IN THE EVENINGS AND MUST USE HIS W/C. SO FAR HE IS STILL

MAKING IT IN THE MORNING WITH HELP WITH MOVING HIS FEET.

>

> I HAVE BEEN AS OPEN AS I CAN FOR YOU AND THE OTHERS. I FEEL IT IS

IMPORTANT THAT OTHERS NEED TO KNOW WHAT IS GOING ON. DIDN'T YOU SAY JOHN IS

ABLE TO CATH HIMSELF? TRY SOME BOOST IT WILL SUPPLEMENT HIS FEEDING AND

KEEP HIS BOWELS MOVING.

>

>

> LOVE

> BONNIE

>

>

>

[Guest guest]

THANKS DOLORES,

CONSTIPATION IS NOT A PROBLEM FOR DON. QUITE TO THE CONTRARY. IT SEEMS TO BE

RELATED TO THE BOOST. HE IS ALSO GETTING LARGE AMOUNTS OF WATER. I HAVE

TROUBLE GETTING/* AS MUCH 3333333333333333333INTO (THE CATS TYPING - SHE WILL

NOT STAY OFF THE COMPUTER ANY MORE) (I THINK SHE IS CHASING THE MOUSE?????)

4S I WAS SAYING I HAVE TROUBLE GETTING THE WATER IN HIM THAT THEY WANT. IF I

GIVE IT BEFORE MEALS HE IS TO FULL TO EAT. AFTER EATING HE IS TOO FULL FROM

EATING.

HE IS DOING WELL NOW. BLOOD PRESSURE IS UNDER CONTROL. I TOOK HIM OFF THE

ZANAFLEX AND THAT WAS THE END OF THE LOW BLOOD PRESSURE.

LOVE

BONNIE

[Guest guest]

HI SHIRLEY AGAIN,

I DIDN'T KNOW HOW TO CATH. THAT WAS ALWAYS DONE BY THE NURSES. BUT I LEARNED

ONE THING. YOU CAN LEARN TO DO MOST ANYTHING. MY MAJOR CONCERN IS TRACHEA

CARE. I JUST NEVER COULD TAKE CARE OF A TRACHEA AT WORK. WE WERE ALL TO KEEP

THEM CLEAN BUT I JUST COULDN'T HANDLE THAT EVEN WITH GLOVES. THAT IS 10 TIMES

WORST THAN MESS FOR ME. I SURE HOPE DON DOES NOT EVER NEED ONE BUT I KNOW THAT

SOME DAY IT WILL BE. WE WILL CROSS THAT BRIDGE WHEN WE GET THERE. I ALWAYS

THOUGHT THERE HAD TO BE A BETTER WAY TO CARE FOR THEM. MAYBE WE WILL GET RICH

WHEN I INVENT A WAY THAT WILL BE MORE PALATABLE FOR ME. ( DREAM)

SHIRLEY TAKE ONE DAY AT A TIME. OUR WORST ENEMY IS LOOKING TOO FAR DOWN THAT

ROAD. I HAVE A GOOD UNDERSTANDING WHAT WILL COME BUT I REFUSE TO LOOK AT IT

YET. I WILL ADDRESS IT WHEN IT GETS HERE. IN THE MEANTIME WE WILL LIVE THE

BEST WE CAN.

I JUST CAN'T WAIT FOR THE WEATHER TO GET WARM. I ONLY GO OUT TO PAY BILLS AND

BUY GROCERIES. I'D HAVE BILL COME TO CARE FOR DON SO US GIRLS COULD HAVE A DAY

OUT BUT I DON'T HAVE ANY MONEY TO DO THAT. I HAVE BEEN HEARING ABOUT THE NEW

STORES. WE USE TO OUT TO EAT SEVERAL TIMES A WEEK NOW I'M LUCKY TO ORDER

CHINESE ONCE A MONTH. IF I KNEW HOW TO COOK IT I PROBABLY WOULD. IT IS VERY

INTERESTING HOW ALL THE OLD RECIPES ARE COMING BACK TO ME. I HAVE TO STRETCH

WHAT WE HAVE AND WE GET TIRED OF THE SAME OLD SAME OLD.

I'M THINKING ABOUT GOING TO THE CERAMIC SHOP AND PICKING UP A FEW ITEMS TO WORK

ON TO ADD TO THE PLS SITE. I'M DRAWN BETWEEN WANTING TO HELP RAISE MONEY FOR

PLS AND ALSO WANTING TO ASSIST WITH RAISING MONEY OF ALS. I'M MULLING OVER A

FUND RAISER FOR HERE IN CLYDE. DON WOULD JUST LOVE A BALL TOURNAMENT WITH THE

GIRLS FROM WHEN HE COACHED. WOULDN'T THAT BE GREAT IF I COULD SUPRISE HIM WITH

THAT?

LOVE

BONNIE

SORRY I WROTE A BOOK AGAIN.