New Here

[Guest guest]

Hi Sunrises,

I know you've been told by others but I'll say it again - this is a wonderful

groups of

people!!! They are always here with support and answers to questions.

I'm one of the lucky ones. Only my legs are affected. I walk with a cane &

stay on my feet - well, most of the time. I started having problems around

1991 but it wasn't until 1998 that I got a diagnosis. Someone else said that

PLS is a disease of

exclusion and that is so right. When nothing is left then there is PLS!

Nice to meet you. Take care. Beth

PS - I live in Indiana. Are you close to here?

[Guest guest]

Hi Laurel,

I'm Beth! I don't remember if I've talked to you before but when I read that

you have 7 cats I had to say something to you. You're my kind of person!!

My husband and I have 6 cats. There's never a dull moment here!!!

I am mildly affected too. Only my legs but I do walk with a cane outside the

house. And even then I have falls. I was diagnosed at the Mayo Clinic also

in 1998. Isn't that an amazing place!!!

Take care. Nice to talk to you! Beth

[Guest guest]

Hi Sunrises:

Welcome to this group. You didn't tell us to much about yourself. What

are your doctor's waiting for? I find that very interesting.

I have had PLS for over 20 years, and live in New Hampshire, 65 years

old and a grandmother of 13 (all 15 and under). This is a wonderful

group of people, and are very supportive to all. Please don't be afraid

of a PLS diagnosis, it's not life threatening, just life changing. Also

there are different degree's of PLS. I am one of the lucky one, still

walk, talk (thats for sure) drive and function quite well. So if you

need help and have questions ask away. Happy New Year!

Rita````

Luv & Hugs!

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

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

of them.

[Guest guest]

Hi Sunrises,

Welcome to a group of nice, friendly, helpful, kind,

and supportive people.

I have PLS, and was diagnosed at the Mayo Clinic

in Rochester, Minnesota in September 1999. I am quite mildly affected with

only my legs being moderately affected. I tire quite easily, get stiff in

the cold. Which it sure is here in Iowa today with the temperature hovering

around zero!

I take nothing for the disease, but have tried various supplements which do

no more than my multiple vitamin I take every day. I use a walking stick

and cane occasionally, but usually do well walking for about 1/2 an hour,

then resting until I'm good to go again.

Tell us more about yourself if you'd like. I'm female, 54, a single mother,

new grandma, own and run an acreage, and work 4 days a week in an outpatient

Cancer Center. I have 3 married sons, a daughter in college, a 2 y/o Westie,

7 cats, and don't take life too seriously! It's just not worth it!

Take care, God bless, and Happy New Year!

Laurel

new here

> HI, I found this group. I have seen many doctors. They think I

> might have PLS. They say we have to wait and see. I have trouble

> walking for a couple years. My legs are stiff and get tired. It is

> getting worse.

>

> sunrises

>

>

>

>

>

>

[Guest guest]

Hi Sunrises,

Welcome to PLS Friends. I just posted a note to Bebe about myself so I

won't reiterate here. Please tell us more about yourself and ask any

questions you would like. You have found some very good friends here and

we'll be glad to share anything at all with you. Hang in there and take

care. Happy New Year Everyone!

Sue Niquette

Vermont

new here

> HI, I found this group. I have seen many doctors. They think I

> might have PLS. They say we have to wait and see. I have trouble

> walking for a couple years. My legs are stiff and get tired. It is

> getting worse.

>

> sunrises

>

>

>

>

>

>

[Guest guest]

Dear Laurel:

I read your message to Sunrise and found it very uplifting. I am new to the

disease and even newer to this group.

I work 2 days a week, tutor an adult one day a week, go the Physical Therapy

twice a week, and enjoy my 5 granddaughters. Your message to Sunrise reminded

me to focus on the half of the glass that is full.

Happy New Year. May you, and all your loved ones, have a year filled with the

" Joys of Living. "

Bebe

[Guest guest]

I am female and middle aged. i am still learning computer so sorry. I

am nervous to give personal information because I don't want my job

or people to find out .

The doctors ruled out MS and tumor and other stuf. They said my

spinal cord is messing up and i probly have either familiar spastic

paraplegia or PLS. They siad it could take a few years to find out.

I hope it only stays in my legs. My walking is getting worse and i

have a cane. they said if I get trouble in my arms and talking then I

have PLS. They said where the spinal cord is messing up causes the

different problems . I hope it's familiar spastic paraplegia.

But they said it could be something else, Lou Gerig's, that looks

similar in the beginning. I don't like not knowing what it is and

pray it's not that.

thanks for the messages. This is nice.

sunrises

[Guest guest]

Hi Sunrises:

Try to take just one day at a time, dear! Do what you can,

and adapt your life to continue as much as you can. Rest

when you need to, and don't be afraid to ask for help too.

We're all in the same boat here, and have been in the not

knowing stage too. It's not fun, but try not to let it get you

down. Getting over tired and too stressed are things that

will negatively affect your legs, and the way you feel all over.

My neurologist is also not 100% sure that I have PLS, but

75%. He suggests that it could be HSP, or Hereditary

Spastic Paraplegia also. My mother has a lot of trouble

walking, but has never been to a neurologist, and doesn't

care to. She is the only other one in the family that has symptoms, but has

always insisted that it is her feet. She does

have a deformity of the feet, but I don't think that's why she

drags her feet, and cannot lift her legs any more. But, when

I am also 75 years old, I'll probably be just as set in my ways,

or even more so.

Happy New Year to you, and may 2002 be good to you.

Blessings,

Laurel

Re: new here

> I am female and middle aged. i am still learning computer so sorry. I

> am nervous to give personal information because I don't want my job

> or people to find out .

>

> The doctors ruled out MS and tumor and other stuf. They said my

> spinal cord is messing up and i probly have either familiar spastic

> paraplegia or PLS. They siad it could take a few years to find out.

>

> I hope it only stays in my legs. My walking is getting worse and i

> have a cane. they said if I get trouble in my arms and talking then I

> have PLS. They said where the spinal cord is messing up causes the

> different problems . I hope it's familiar spastic paraplegia.

>

> But they said it could be something else, Lou Gerig's, that looks

> similar in the beginning. I don't like not knowing what it is and

> pray it's not that.

>

> thanks for the messages. This is nice.

>

> sunrises

>

>

>

>

>

>

[Guest guest]

Sunrises:

Welcome to our group. You will have lots of welcomes from various members.

You stated that you may have " familial spastic paraplegia " . Does anyone in

your family now or in the past had similar symtoms?

I agree that in the beginning it is very scary. It gets scary later on too,

but not as much. I guess we learn to live with it. Some doctors say wait

and see as to whether the dx is correct or not. Others, like my husbands,

are adamant that it is PLS and not anything else. It seems that those

afflicted have different progressions. You will get a lot of comfort out of

this group. Do you have a caregiver and/or spouse? By the way, I like your

" pen " name.--Dollie

>

>Reply-To: PLS-FRIENDS

>To: PLS-FRIENDS

>Subject: Re: new here

>Date: Tue, 01 Jan 2002 13:20:05 -0000

>

>I am female and middle aged. i am still learning computer so sorry. I

>am nervous to give personal information because I don't want my job

>or people to find out .

>

>The doctors ruled out MS and tumor and other stuf. They said my

>spinal cord is messing up and i probly have either familiar spastic

>paraplegia or PLS. They siad it could take a few years to find out.

>

>I hope it only stays in my legs. My walking is getting worse and i

>have a cane. they said if I get trouble in my arms and talking then I

>have PLS. They said where the spinal cord is messing up causes the

>different problems . I hope it's familiar spastic paraplegia.

>

>But they said it could be something else, Lou Gerig's, that looks

>similar in the beginning. I don't like not knowing what it is and

>pray it's not that.

>

>thanks for the messages. This is nice.

>

>sunrises

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi group was wondering if anyone can tell me the differance between ALS and

PLS. I know that one is upper and the other is lower neron. But am wondering

what the symtons are for both would like to know to look for in my husband to

know if he is going from PLS to ALS or if he is just staying the same he now

has PLS. But do not know what to look for to know if it may be ALS. or is

this just somethings the doctors can tell with testing? Please let me know

thank you Shirley

[Guest guest]

thanks Rita was helpful just still wish I knew what to look for do they get

worse with ALS or is there no differance? just can tell by testing? my

husband is haveing a hard time with his breathing and he chokes on almost

everything he eats. So I have to make sure that everything is cut very small

for him. He also can not cut it for himself. So many of the people in the

group sound like they are doing so much better then he is and I wonder why

that is? He still works full time but is all he can do does nothing in the

house as he is not able to he does take care of his own cleaning and dressing

of himself most times. I do sometimes have to help him with his pants to get

them done up. But this whole thing in the morning takes from 3 to 4 hours to

shower get dressed shave and brush his teeth is this to what some of you have

to do and does it take you that long? Will enough will ask more again don't

want to bore you all to pieces. Thanks to everyone Shirley

[Guest guest]

Shirley:

I am not any authority on either PLS or ALS, but be thankful that he has

PLS, which is not life threatening like ALS. As far as I can tell ALS

can be diagnosed by doctor's,however PLS is diagnosed when they can't

determine what the problem. The neurologist who diagnosed me in 1986

referred to PLS as " The Garbage Disease " . So again I say be thankful

for the PLS diagnosis. I am sure you will get more detailed

explanations from other's in this group, but I don't understand a lot of

the terminology used by those smarter then me, so I always ask the

doctor's for a simple explanation, and that was what I was told. Hope

this helps.

Rita

Luv & Hugs!

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

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

of them.

[Guest guest]

PLS is only or predominantly upper motor neuron - it evolves more slowly

than ALS. ALS involves both upper and lower motor neuron symptoms. There

is some discussion about PLS as a distinct syndrome especially since lower

motor neuron symptoms are seen at autopsy in most PLS patients according to

my neurologist. She told me the other day that motor neuron disease is on

a continuum. She believes if she did a repeat EMG on me today I would

probably have lower motor neuron findings but she said that would not

change her diagnosis or my prognosis. Some people are reclassified as ALS

if the disease comes to involve a large number of lower motor

neurons. Mostly you would see muscle atrophy and even more

weakness. Trust your neurologists and see specialist in neuromuscular

diseases.

At 09:25 PM 01/01/2002 -0500, you wrote:

>Hi group was wondering if anyone can tell me the differance between ALS and

>PLS. I know that one is upper and the other is lower neron. But am wondering

>what the symtons are for both would like to know to look for in my husband to

>know if he is going from PLS to ALS or if he is just staying the same he now

>has PLS. But do not know what to look for to know if it may be ALS. or is

>this just somethings the doctors can tell with testing? Please let me know

>thank you Shirley

[Guest guest]

Hi Shirley,

I know how confusing it can be when you see progression that isn't

consistent with what you are told is characteristic of PLS.

Every time I see something written that says PLS doesn't do this or

that, I wonder why so many of us have those problems. I think the

bottom line is that PLS is in the ALS spectrum. The spectrum goes

from pure upper motor neuron involvement(classic PLS) to upper and

lower motor neuron involvement (classic ALS) and then to pure lower

motor neuron involvement (classic PMA). Somewhere in there is

Progressive Bulbar Palsy, the muscles innervated by cranial nerves

and corticobulbar tracts, chewing, swallowing, talking and

Pseudobulbar Palsy, emotional response.

From the Merck Manual

http://www.merck.com/pubs/mmanual/section14/chapter183/183b.htm

" Lower and Upper Motor Neuron Disorders

Disorders of unknown cause characterized by progressive degeneration

of corticospinal tracts, anterior horn cells, and/or bulbar motor

nuclei. "

" The disorders are named and symptoms vary according to the part of

the nervous system most affected. "

When a person shows mostly upper motor neuron signs and no (or very

few) lower motor signs for a period of 3 to 5 years, the diagnosis

might be PLS (or HSP). PLS usually starts in the legs, mimicking

Sporadic or Hereditary Spastic Paraparesis, but eventually will

spread to involve the other regions, thus eliminating HSP. Sometimes

PLS starts in the bulbar muscles and then spreads to involve the

other regions. While the hands are involved in PLS, it usually isn't

the first area to be affected. But with ALS, the hands are the site

of onset for a large majority. It can vary greatly with ALS

though. Some PLSers never develop any LMN signs, even after 20

years. Others do develop LMN signs but the involvement is usually

minimal. Occasionally, significant LMN signs will develop over

time, changing the diagnosis to ALS.

The issue of speed of progression depends on the variant of ALS.

There are several variants, one being very slow in progression, much

like PLS. This is the kind of ALS that the physicist,

Hawking has. It can progress slowly for 10 to 30 years. There is

significant LMN involvement but because it is so slow in

progression, it can take a while for the LMN involvement to become

significant enough to warrant the definite ALS classification.

Your husband might actually have this slow variant of ALS, or he

might have PLS with strong Bulbar symptoms. It is really hard to

say. The medical community doesn't like to give the label of ALS if

there is any doubt, if you don't meet the El Escorial Criteria. You

can go to this site to see the diagnostic criteria:

http://www.wfnals.org/Articles/jns124_s.htm

So, I think some that will eventually be rediagnosed with ALS get

the PLS diagnosis initially. They have to call it something, right?

The important thing to remember is that ALS has different variants

and outcomes. A diagnosis of ALS doesn't have to mean a rapid

progression and death within a few years. The majority do progress

rapidly, but a few, approx. 10%, have the slower form. You don't

hear much about the slow form and most studies are on the classic

form of ALS. But the slow form is closer to what we have with PLS.

In fact, the discovery Dr. Siddique published in Oct. showed the

link between the juvenile onset form of slow progressing ALS and

PLS. Now we just need to find the adult onset forms and maybe we

can find some real answers for our disease.

Shirley, I really think the stress is one of the biggest factors in

progression of our form of disease. It is really important that

your husband eliminates whatever stress he can, and that he spends

some time taking care of himself. He needs to do things he's always

wanted to do, read books he always thought he'd get to, develop

hobbies that interest him. If he really enjoys work, then that

would probably be good for him to continue. But if it is a big

stress factor, it might help if you two start discussing ways to

take an early retirement. It is a scary time for him, and you too.

But it does get easier once you accept the changes and decide to

enjoy your life to the fullest.

The only sign my doctor told me I could look for to signal a

progression to ALS would be atrophy. If we see atrophy, then he

will do more tests (emg, etc.) The main area he told me I could

watch is the muscle between my thumb and hand (looking down on your

hand). When that muscle atrophies, you will see a noticable

indentation (round dimple) and diminishing of the muscle(press your

thumb against the hand to see the bulk of the muscle). This link

shows you the muscles I'm talking about.

http://www.rad.washington.edu/atlas/interossei.html

Most people have some muscle atrophy as they age, but if your

husband is having a lot of trouble with his hands, you might watch

for signs that way. Some atrophy is seen in PLS, especially in

these muscles and after many years of not fully using the muscles,

so it requires an emg to determine if there is actually denervation

activity.

Is your husband involved in any support groups? Do you live in an

area that has any ALSA chapters or an ALS clinic? You can check

this site for some in your area. http://www.wfnals.org/Clinics.htm

I hope things level off a bit for you two. It seems as if there is

a period when the symptoms just keep coming, one after another.

Then things seem to settle down and you remain in a holding pattern

for a while before further progression.

[Guest guest]

Shirley:

Maybe it's time to consider retirement. I did 15 years ago, best move I

ever made. The way you describe him, he might be a good candidate.

Also, if and when you meet other PLSer's you will find different

degree's of progression, as to why and how come, nobody knows. I always

say we have to listen to our bodies and judge for ourself.

Your never boring!!! Don't even think that way.

Rita

Luv & Hugs!

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

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

of them.

[Guest guest]

Hi Shirley, Just wondering if your hubby has seen an occupational

therapist. These folks know about lots of adaptive aids that may lessen

the time it takes to dress and increase his independence. I just had a

course in putting on shoes, socks, and trousers since I can hardly lift my

legs under my own power any more. I would definitely talk to the doc (and

later a speech pathologist) about the choking too. Good luck. Lavon

[Guest guest]

Hi Shirley,

Welcome to the group. I am a 70 year old female and was diagnosed in October

1999 with PLS. It is mostly my right leg that is affected and loss of

balance is the biggest problem for me but my arms are weak and my fingers

don't work too well (have trouble with buttons, drop just about everything,

etc.) It takes me a long time to get dressed in the morning, too. I try to

allow 3 hours each morning to take a shower, get dressed and eat breakfast.

Then to do my exercises, it takes more time. So I find that most of my

morning are gone. If I have a doctor's appointment in the morning, the

exercises don't get done and sometimes I must get up at 5:30 to leave by 8:30

AM. I don't worry about ALS as it does no good to worry. I just accept PLS

for now and will deal with whatever comes my way later.

It is very hard to accept the illness and all of us had the same problem. I

don't work and therefore don't have your husband's concerns, but with your

support he should be okay. His attitude is most important. So try to forget

about ALS for now and brighten his days in every way possible. We will pray

for you both!

Jane McCord

[Guest guest]

Thank you so much Jane was nice to hear your words of encouragement means a

lot to me hope you are doing well. I do try to keep my focus on the PLS but

is so hard not knowing what the future holds for us. Thank you Shirley

[Guest guest]

Shirley:

When I was first diagnosed, if you had told me I would still be here, I

would have said no-way! But here I am 20 years later, looking forward

to C., baking me a cake for #66 in May. You can't sit around and

worry and dwell on the fact we have PLS. We got it, it ain't going

away, so we have to learn to live with it, no matter what. I know it's

not easy for everyone, but you gotta keep plugging along the best we

can. If you get to one of the PLS get together's you will come away

feeling inspired and grateful, I guarantee it!

Rita

Luv & Hugs!

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

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

of them.

[Guest guest]

Hi

I am also new to the group and would like to say Hello.

I am type 2. I live in Canada a place called Corrnwall On.

Hope everyone is fine and healthy.

wrote:HI I am and I am New here I am

type 2 adn I live in

Longview, tx I am 26 years old. I am takeing Glucophage XR 500mg 2

pills two times a day and Gulcotrol XL 5mg 1 time a day. I hope to

get to know some of you soon... Send me an Im sometime

[Guest guest]

I am new here too, live in the Boston area, have type 2, control it by diet.

Limiting carbs is tough for me with my love of sweets and breads and

pastries, but I am doing fairly well. Fell a month ago and my blood sugar

went up and is just now going down again, so I joined this list to learn

more

Sandy

[Guest guest]

Welcome aboard . I was diagnosed almost 3 months ago. I'm still in

the learning phase, that's on what I can and cannot eat. But ask questions

if necessary, I'm not a doctor, but I'll put my two cents in.

Boy have I been having fun for the last 4 days trying to get my computer

back up and running. I'm starting from the bottom of all the emails and

trying to catch up on what's been going on. Almost like reading a book

backwards.

new here

HI I am and I am New here I am type 2 adn I live in

Longview, tx I am 26 years old. I am takeing Glucophage XR 500mg 2

pills two times a day and Gulcotrol XL 5mg 1 time a day. I hope to

get to know some of you soon... Send me an Im sometime

[Guest guest]

Fell a month ago and my blood sugar

went up and is just now going down again,

I know the feeling Sandy,

I too miss sweat rolls and all those other goodies I use to like to eat. I

have learned that if I stray, I'll just work out and walk a little more and

then in a couple of days, I'll be back to normal. I've gotten pretty use to

that so I don't let it stress me. In fact, at times when I'm betting on

high numbers due to eating out and eating what I know I should not have, my

numbers are usually low, around 95 - 100, the normal area. But add rice to

my diet, 122 - 124 for a day. I guess my body can no longer digest rice

correctly.

[Guest guest]

my

numbers are usually low, around 95 - 100, the normal area.

But add rice to

my diet, 122 - 124 for a day. I guess my body can no longer digest rice

correctly.

--

I am a step above you, usually in 110's and 120's

and rice surely does me in too, much more than some other carbs

Sandy

Jacaranda

Wanderers will return

Scattering stardust over all

Walking the circle

North west south east

Dawn day sunset night

Trailing purple in a spiral

Of passion, honesty and love

[Guest guest]

Hi there!

I just found this group today. I am pretty sure that my mom has BPD

although she would never go to a therapist because according to her

that is something to be ashamed of. So I guess I will never really

know for sure.

I was severely verbally abused my whole life by my mom while my dad

and entire family sat back and didn't say a word. Basically I have

had to walk on eggshells my entire life and if I wasn't being verbally

attacked, I was either being ignored or humiliated like the time my

mom didn't like the face I made at what she made for dinner so she

took the full dinner plate and smashed it over my head and then made

me sit through dinner with food all over my head while my dad and her

ate like nothing had happened. This was after her verbally berating

me at what a worthless ungrateful piece of sh*t I was because of the

face I supposedly made. I also wasn't allowed to cry or show any

emotion because it would make my mom furious and the verbal abuse was

10 times worse. I could go on and on and usually when I do confide in

someone that knows my mom they don't believe that she did those things

to me. Of course, to them she is super cool, really funny, and always

nice. All she ever cares about is what other people might think of

her so she is VERY manipulative and always conscious of " other

people. " Everyone else is the bad guy and she is the victim.

I am in my 30s now and I haven't spoken to my mom since December. The

final straw for me was watching my mom and dad attempt to force my

little sister to get married to a guy that hits her and is a complete

loser because my sister was pregnant. My mom actually admitted to my

face that my sister's boyfriend is a piece of sh*t and marriage will

never work but she doesn't care because other people will think she is

a bad mom if she has a bastard grandchild. My mom did the same thing

to me when I was 17. She forced me to get married because I wanted to

share a 2 bedroom apartment with my boyfriend after I graduated high

school. And the funny thing is, I was so innocent back then that I

really was going to have my OWN room and we were going to be roommates

instead of boyfriend/girlfriend. She refused to sign my student

loans, she had my dad disable my car, and she took my life savings (an

account that I had since I was 5 all saved by me) and would only give

the stuff back if I got married. I did just so I could get away from

her. I moved 2 hours away from her and then got myself divorced. Of

course that was used against me for YEARS. So needless to say when

she did that to my sister I had it and have not spoken to her since.

So that's a little about my background and the reason I am on this

site is because my biggest challenge is being able to get angry or

disappointed, etc and handle it appropriately in my personal

relationships. I have had a hard time with conflict, I either shut

down, or blow up and then get so scared that the person I am mad at

will leave me that I apologize and try to take back whatever I might

have done. Anyone figured out how to balance that? I have been

trying to find something that can show me how to express myself in a

healthy way but I can't seem to find anything that applies to my

situation.

Anyways, sorry this is so long. It's just that Ive never really had

anyone to talk to that has been through this kind of stuff before....

Thanks for understanding....

Mel