Question

[Guest guest]

I couldn't give up this list if I wanted to! Y'all have been a major

part of my life now for 1 1/2 years. Anyway, Terry figured it out and I

know now how to post so y'all can access it better. Thanks for

mentioning it because I would never have known. : )

Rhonda

198/168/145

8/99

[Guest guest]

:

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]

:

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]

Rita:

You go girl! I love your outlook on life, and have adopted one just like it for

my own. This PLS is not going to get me down, nor prevent me from doing things

I enjoy. I just may do some of them a little differently, and slowly.

I am like you. Things that get me down sometimes my weight (just like you),

being lonely (then I just wrangle up a date), my finances. But even then, I try

not to stay down for very long. Doing something, anything, is what helps bring

me back up.

Hugs to all on this wonderful Sunday!

Laurel

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]

Rita:

You go girl! I love your outlook on life, and have adopted one just like it for

my own. This PLS is not going to get me down, nor prevent me from doing things

I enjoy. I just may do some of them a little differently, and slowly.

I am like you. Things that get me down sometimes my weight (just like you),

being lonely (then I just wrangle up a date), my finances. But even then, I try

not to stay down for very long. Doing something, anything, is what helps bring

me back up.

Hugs to all on this wonderful Sunday!

Laurel

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]

Sherry

It is very difficult to deal with a diagnosis of ALS (MND in Aust). I wrote

an article on my reaction to receiving such a diagnosis which may be of

interest to you. So I am pasting it below. Apologies to all for its

length.

It seems to me that at some point hope does emerge and that we do accept the

challenges that ALS presents. One thing I know for sure is that people,

like you, who deal with such a diagnosis on a daily basis are hero's in

every sense of the word. Your obvious, innate courage WILL carry you

though.

cheers

Cole

MOTOR NEURONE DISEASE - DIAGNOSIS AND THE FUTURE

Recently I enjoyed reading Lance Armstrong's biographical book, titled " My

Journey Back to Life " . Lance was diagnosed, in 1996, at the age of 25

years, with advanced testicular cancer. The cancer had spread to his lungs

and brain and his chances of overcoming it and surviving were very low. He

did survive it however, and resumed his professional cycling career to

become a three times winner of the Tour de France, in the years 1999, 2000

and 2001.

In the course of consulting Oncology Specialists he repeatedly asked, " What

are my chances? " In the book he spoke of that question as follows: -

" It was a question I would repeat over and over. But it was irrelevant,

wasn't it? It didn't matter, because the medical odds don't take into

account the unfathomable. There is no proper way to estimate somebody's

chances, and we shouldn't try, because we can never be entirely right, and

it deprives people of hope. Hope that is the only antidote to fear. "

This paragraph led me to recall my experience when I was diagnosed with

Motor Neurone Disease in February 1997, at the age of 52 years.

After various tests, an MRI and 2 EMG's and two neurological examinations,

an appointment, to advise me of his conclusions, was made with the Neurology

Specialist, who ordered the tests and carried out the examinations. The

possibility that the diagnosis could be Motor Neurone Disease (MND) had been

raised in the referring letter from my GP to the Specialist, which naturally

I had read. I was therefore a little prepared for the worst. Information

about the disease had been obtained from the Internet prior to the scheduled

appointment. Naturally, I was still hoping that it might turn out to be

anything other than MND.

The Doctor seemed very uncomfortable when he delivered the diagnosis and the

prognosis for the disease. He told me that the likely prognosis was that I

could expect that the disease would have a fatal outcome within a period of

one to three years. He also gave me a brief explanation of the effects of

the disease on my body. He suggested that I needed to fairly urgently

consider my priorities for the immediate future. Although somewhat shocked

by the news, I was quite puzzled by his reference to not taking " heroic "

measures as the disease advanced. The prognosis, given in those terms, left

me with no sense of hope for the future. In health terms alone, the

prognosis was appalling, as also were the financial implications and

intertwined issues of future quality of life.

Subsequent information, through as many sources as I could locate, and

gradually the realisation that, in my case the disease was progressing very

slowly allowed hope to return and for the fear to subside. Sources of

information included the Internet, MNDASA and the sharing by others of their

experiences through Email subscriber lists such as Bob Broedel's list and

OZPALS. However, I had to locate all these resources, basically through my

own efforts aided by my fierce desire to come to terms with it.

This information gathering process occurred over some months and many hours

of research. It led to me to understand that the Doctor, whose advice was

well meant, was unable to give me my prognosis and that the journey with MND

is for each us different and uniquely personal.

If an expert MND Counsellor had been available to me shortly after or at the

time of being diagnosed, my journey may potentially have been less filled

with fear and accordingly less painful. We could have explored the vagaries

of the disease, as it affects each of us individually, and thereby allowed

hope to re-ignite.

Hawkins, who celebrated his 60th birthday in January of this year,

exemplifies the extraordinary natures of the differing paths this disease

can follow. He was diagnosed with MND 34 years ago and his continuing

achievements far exceed those of most able-bodied people.

Cole

14 January 2001

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]

Jane D.

Laurel is pointing you in the right direction. Some help, whether temporary

or not, should definitely be considered.

Regards

Cole

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]

Darn Rita that was my next question. Was hoping you could help. But thanks

lol : )

[Guest guest]

Shirley, I don't know the answer to your question, but (these are my

feelings) under these circumstances, to me their is NO QUESTION that

can't be asked of this group (except to borrow money). LOL!

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]

Hello Bonnie,

First I have to thank you for your honest reply. I know this is a hard

subject. Yes, can still cath. himself but it gets harder for him

everyday. They also wanted me to learn how to do this but not sure I want to.

I guess it is great that you have had training in this field. I have none. My

daughter has worked as an aid in a hospital so she can tell me many things.

Seems s whole life revolves around his bladder. Due to the fact that he

has to cath. every 2 hours. The bladder holds very little only about 150 cc

to 200 cc then starts to go into the spasms he then caths. and has pain when

he does that then as the bladder empties he has pain again. Then you have the

cleaning of the caths. and all this.

To answer your question about going out this really does not seem to

be an issue due to the fact that we don't go out. He has not left the house

in over a month now. I go when I can but he does not. We have many doctor

apts. coming this month so will be interesting to see how those all go. I see

a lot of stress in my life in the near future. I told that we could have

an aid come in to help him shower and shave but he said that he would be very

embarrassed and also said he was very embarrassed even to have me help him. I

am not surprised as he has always been very shy. But I need the help as he

does also. So this to we will wait and see how it plays out. We see Dr. Fink

on the 12 I think of this month and I know Joanie will give him what for on

this issue. Well, again Bonnie I have went on long enough. But thank you so

much for your information. Shirley

[Guest guest]

Lyndal

Thank you very much for your information, yet I don't have any spasm only

spasticity in the legs, I do stretching exercises 30 minutes every day and

also I go to gym there I practice on walking trail for 40 minutes and than I

swim 20 minutes, I'm treated now with neurontin that doesn't fatigue mi and

works very good on my spasticity I take only 3 of 6 recommended per day

because the weather got warm and in the summer I fill better,also when my

spasticity is less I falling more easily and I must find the right point to

balance myself (did I defined right ? )

Moshe

Re: QUESTION

Moshe,

A spasm is a sudden muscle contraction and is generally

very painful (like a charlie horse in the calf muscle) and

then goes away after a while when the muscle has a

chance to relax again, whereas spasticity is overall and

continual muscle stiffness and resistance to movement

with increased tendon reflexes. For a normal person

movement is possible by the push and pull of opposite

muscles -- for example bending your arm uses one set

of muscles and straightening your arm uses the opposing

muscles. Spasticity generally means one muscle is in

more tension than the other and if you don't do gentle

stretching exercises and use muscle relaxants these

muscles will tighten up and you will have more cramping

and spasms. Stretches allow the muscle to lengthen

again and provide a greater range of motion for your

movements. Hope this helps.

Lyndal

In a message dated 4/11/2003 7:26:49 AM Mountain Standard Time,

holam@... writes:

Is spasticity the same as spasm ?

Moshe

MOISES HOLAM

---

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[Guest guest]

and Moshe,

As I understand them, spasticity is a continuous contraction of a voluntary

muscle causing stiffness and tightness and is usually caused by damage to

brain cells or cells in the spinal cord.

Symptoms of spasticity include:

muscle spasms (involuntary contraction of muscle fibers; the spasms

may be clonic in which muscles contract and relax alternately in quick

succession or tonic in which the muscles contract in a steady state for

prolonged periods),

increased muscle tone, hyperreflexitivity,

fixed joints (for example, " frozen shoulder " ) and

clonus (rapid alternating contractions and relaxations of a muscle.

There is a fine line between the above, but technically, clonus and spasms

are symptoms of the broader topic " spasticity " .

Dolores

RE: QUESTION

>

> Question: what is the difference between Colnus, spasm, and spasticity. I

> keep getting them mixed up...

>

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

> A Breaux

[Guest guest]

Thanks for the clarification....

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

A Breaux

Disability is an external influence

It is by caffeine alone I set my mind in motion.

It is by the Beans of Java that thoughts acquire speed,

the hands acquire shaking, the shaking becomes a warning.

It is by caffeine alone I set my mind in motion

> Re: QUESTION

>

> and Moshe,

>

> As I understand them, spasticity is a continuous contraction of a

> voluntary

> muscle causing stiffness and tightness and is usually caused by damage to

> brain cells or cells in the spinal cord.

>

> Symptoms of spasticity include:

> muscle spasms (involuntary contraction of muscle fibers; the

> spasms

> may be clonic in which muscles contract and relax alternately in quick

> succession or tonic in which the muscles contract in a steady state for

> prolonged periods),

> increased muscle tone, hyperreflexitivity,

> fixed joints (for example, " frozen shoulder " ) and

> clonus (rapid alternating contractions and relaxations of a

> muscle.

>

> There is a fine line between the above, but technically, clonus and spasms

> are symptoms of the broader topic " spasticity " .

>

> Dolores

> RE: QUESTION

>

>

> >

> > Question: what is the difference between Colnus, spasm, and spasticity.

> I

> > keep getting them mixed up...

> >

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

> > A Breaux

>

>

>

>

>

>

>

[Guest guest]

Hi Dolores,

Thanks! That is the first time I understood just what spasticity encompasses.

My main problem is extreme stiffness.

Jane in Gainesville

[Guest guest]

Spelling errors, punctuation errors. Geez. I miss spell check. lol.

~Trista~CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! ************************************************PBS is great! Use the link below and try it! http://www.paperbackswap.com/index.php?r_by=tabeloe@...

Question

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.33/1034 - Release Date: 9/27/2007 5:00 PM

[Guest guest]

Spelling errors, punctuation errors. Geez. I miss spell check. lol.

~Trista~CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! ************************************************PBS is great! Use the link below and try it! http://www.paperbackswap.com/index.php?r_by=tabeloe@...

Question

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.33/1034 - Release Date: 9/27/2007 5:00 PM

[Guest guest]

Spelling errors, punctuation errors. Geez. I miss spell check. lol.

~Trista~CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! ************************************************PBS is great! Use the link below and try it! http://www.paperbackswap.com/index.php?r_by=tabeloe@...

Question

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.33/1034 - Release Date: 9/27/2007 5:00 PM

[Guest guest]

I can't get it either. Oh, I can get it, but insurance won't pay for it and I don't happen to have an extra $300 a month to pay for it... Hugs Akiba -- Question I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

[Guest guest]

I can't get it either. Oh, I can get it, but insurance won't pay for it and I don't happen to have an extra $300 a month to pay for it... Hugs Akiba -- Question I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

[Guest guest]

https://www.pparx.org/Intro.php -- this is the program advertised on

the Montel program--

Good Luck!

n Rojas

-------------- Original message --------------

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

[Guest guest]

https://www.pparx.org/Intro.php -- this is the program advertised on

the Montel program--

Good Luck!

n Rojas

-------------- Original message --------------

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

[Guest guest]

Yeah, it's really expensive.

~Trista~CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! ************************************************PBS is great! Use the link below and try it! http://www.paperbackswap.com/index.php?r_by=tabeloe@...

Question

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.33/1034 - Release Date: 9/27/2007 5:00 PM

[Guest guest]

Yeah, it's really expensive.

~Trista~CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! ************************************************PBS is great! Use the link below and try it! http://www.paperbackswap.com/index.php?r_by=tabeloe@...

Question

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.13.33/1034 - Release Date: 9/27/2007 5:00 PM

[Guest guest]

Hi! I had a neuro psych evaluation recently, and the generous Dr. gave me a script for a free trial of Provigil. If I can locate it;

I think I know where it is, I can send to you, as I have a script from my neuro already. This is not a 'personalized' script,

but a generic type one--so anyone can use it. I hear ya with the kid thing--I have 4 at home, 7,10, 13, 15--and a 19 year old

in college. I've not needed the provigil too much lately, as I've been increasing my exercise--when they are at school and it

is helping my energy levels. However, I am having a devil of a time with spasticity and spasms! All my best to you!

blessings~

kate

Question

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.

[Guest guest]

Hi! I had a neuro psych evaluation recently, and the generous Dr. gave me a script for a free trial of Provigil. If I can locate it;

I think I know where it is, I can send to you, as I have a script from my neuro already. This is not a 'personalized' script,

but a generic type one--so anyone can use it. I hear ya with the kid thing--I have 4 at home, 7,10, 13, 15--and a 19 year old

in college. I've not needed the provigil too much lately, as I've been increasing my exercise--when they are at school and it

is helping my energy levels. However, I am having a devil of a time with spasticity and spasms! All my best to you!

blessings~

kate

Question

I have heard some of you speak of going to the drug complany, when youare in need of a med, that your ins. won't pay for. I need Provigilfor horrible fatigue. How would I go about contacting them. Anybodyhave any advice? I am only 37, and would love to be able to better myquality of living. I need to function with having 4 children.