My first posting

[Guest guest]

Hi folks

I have been reading your messages and finally got around to posting

my own.

My symptoms started 5 years ago while jogging when I stubbed my toe

and then lost my balance and fell. After 30 doctors, two unnecessary

back operations, and numerous tests, a neurologist told me I might

have PLS since they had run out of other options. My mobility has

gradually declined to the point that I need two canes to walk and am

often in an electric wheelchair. A year ago I had a Baclofin pump

inserted, but I'm not sure it has done much good and I've had the

dosage raised and lowered numerous times. I've been as high as 120

but am now at 55.

More troubling to me, since I am an attorney, is the decline in my

speech wwhich started about 2 years ago ( who would want a lawyer who

can't talk to be their mouthpiece?) A speech specialist made a palate

lift which limits the airflow up my nasal passage about 18 months

ago. Without it, my speech is incomprehensible. I have been looking

at the Botox treatments some of you have had. My neurolgist is afraid

it wouldn't help me because he describes my condition as dysartheria,

caused by weak muscles in the tongue and palate. Have any of you had

similar conditions and found help with Botox?

I would appreciate any other thoughts on tests, clinical experiments

or drugs (I have been taking Rilutek for 3 years.) Stem cell research

sounds the most promising for a cure

I would like to make a challenge gift to the NORD project and would

like to know exactly how to do this. Since we just had a new member

named Steve, I'll go by Steve W and we can call it the " Dubya

Challenge "

Steve W

[Guest guest]

Hi Steve! I am one of the Botox folks and the doc unfortunately is right-

this is not your drug. Without Botox my voice is hoarse and squeaky

(Mickey Mouse with allergies?) because of spasmodic dystonia. The Botox

goes into larygeal muscles too keep the cords from closing and not letting

air through them. Does nothing for the palate. Reading your story I was

hit with the idea that we need a logo- anyone ready to draw the one thing

we have in common? I speak of course of the tripped over toe...

:-) Where are you from? Lavon

[Guest guest]

Hi Steve W!

My history is 10 years old and is nearly the same of yours. I did

have too operations and very much misunderstandings. They said even

at this time I have a conversion (psychosomatic) disorder. My today's

physicians said that it is inexcusable of this assessment, although

when PLS is a very rare disorder.

I have too weaked muscles of tongue and palate. A EMG and motor

evoked potential by cortex of tongue was normal, but the neurography

was at the right side very pathalogical. A video of swallowing has

shown a weaked spastic pharynx left, a weaked hypotonic palate and

absent of gulp-reflex. I have problems with breathing. I have a

speech and swallowing therapist.

I am 27 years old female. I have a progressive tetraparesis with mild

amyotrophies and a great spasticity, leg marked hyperreflexy but at

the othe regions too, path. foreign-reflexes, pos.Babinsky, clonus,

bulbar signs and symptoms (atrophy, fasciculations of tongue) with

problems of speech when it is a long time speaking, problems of

swallowing, flowing saliva at left side, progressive respiratory

muscles insufficiency, often congestion of secretion by infections

(cold, influenca) and after eating. The reflexes are so brisk that I

have clonics they are triggered by various forms of stimulations of a

muscle and through muscle activities.

I need a wheelchair, I have a spechial car to drive. Since 6 months I

have therapy for my breathing problems with a non-invasive ventilator

with positive effect.

My neurologist is convinced that I have PLS because since years all

examinations exclusioned other diseases. But it would be exclusioned

a special form of ALS because of my age. One weak ago, I did have a

magnet stimulation (motor evoked potential) of diaphragm. Now I am

still waiting of the results.

I am under treatment with baclofen and Depakote (valproate, I didn't

have epilepsy) for spasticity, clonus and pain.

My physician said that I am a candidate for Rilutec (Riluzole).

What is Botox?

All the best for you!

Sonja

> Hi folks

> I have been reading your messages and finally got around to posting

> my own.

> My symptoms started 5 years ago while jogging when I stubbed my toe

> and then lost my balance and fell. After 30 doctors, two

unnecessary

> back operations, and numerous tests, a neurologist told me I might

> have PLS since they had run out of other options. My mobility has

> gradually declined to the point that I need two canes to walk and

am

> often in an electric wheelchair. A year ago I had a Baclofin pump

> inserted, but I'm not sure it has done much good and I've had the

> dosage raised and lowered numerous times. I've been as high as 120

> but am now at 55.

> More troubling to me, since I am an attorney, is the decline in my

> speech wwhich started about 2 years ago ( who would want a lawyer

who

> can't talk to be their mouthpiece?) A speech specialist made a

palate

> lift which limits the airflow up my nasal passage about 18 months

> ago. Without it, my speech is incomprehensible. I have been looking

> at the Botox treatments some of you have had. My neurolgist is

afraid

> it wouldn't help me because he describes my condition as

dysartheria,

> caused by weak muscles in the tongue and palate. Have any of you

had

> similar conditions and found help with Botox?

> I would appreciate any other thoughts on tests, clinical

experiments

> or drugs (I have been taking Rilutek for 3 years.) Stem cell

research

> sounds the most promising for a cure

> I would like to make a challenge gift to the NORD project and would

> like to know exactly how to do this. Since we just had a new member

> named Steve, I'll go by Steve W and we can call it the " Dubya

> Challenge "

> Steve W

[Guest guest]

Hi Sonja! Botox is botulinum toxin in very small doses. It paralyzes part

of a spastic muscle with a local injection. Lavon

[Guest guest]

Lavon,

Ah, I know Botulinum toxin. I asked my physician about it 2 years

ago. He said me that will be taken a little dose, because with an

overdose. He has been told me that it called botulism. It is the same

bacterius like food poisoning and now the drug is good for dystonic

and spasticity in little dose. Is that correctly?

Sonja

> Hi Sonja! Botox is botulinum toxin in very small doses. It

paralyzes part

> of a spastic muscle with a local injection. Lavon

[Guest guest]

Exactly correct! Lavon

>Lavon,

>

>Ah, I know Botulinum toxin. I asked my physician about it 2 years

>ago. He said me that will be taken a little dose, because with an

>overdose. He has been told me that it called botulism. It is the same

>bacterius like food poisoning and now the drug is good for dystonic

>and spasticity in little dose. Is that correctly?

[Guest guest]

Hi Steve W,

Welcome to our group. I was out of town when you posted so am just

now catching up with everything. I'm really pleased that you are

making a NORD challenge. I just rec'd an email from one of the

PLSers whose daughter wanted to donate to the NORD/Carron challenge

but that all that was left of it was $100. I wasn't able to verify

the status of that challenge but passed on the info that she could

designate her donation to the " Dubya challenge " . Hope that is ok by

you! It is really great that you are doing this as we need to keep

the fundraising going. We've made great progress so far but we still

have a long way to go. I'm copying a page from the fundraising

website regarding NORD donations and challenges. You can go to the

website at: www.geocities.com/mdmfoo/pls.html If you need further

info you can always call at NORD.

I think you are right on the stem cell research being the best

hope. Have you seen the 60 minute segments on the ALS Therapy

Development Foundation? I've been in touch with the Heywoods and

they are certainly determined to find an answer. There is a link to

them on the website.

I am sorry your baclofen pump hasn't worked out better for you. I

just had one inplanted two months ago. I'm really pleased with the

improvement I've had with my walking and my speech. I guess everyone

of us reacts differently. I just had my second dose adjustment so am

now at 60 mcg per day. My doc wants to take his time with the

increases so I don't have an adverse effect so we are just doing 10%

at a time. I also have the weak tongue problem. It is amazing how

the baclofen pump helps my speech. When I get tired or talk too long

it gets bad again, but I'm not complaining!

Here is the page with the NORD info:

How can you help?

HOME

Fund Raising Ideas/for NORD-PLS Research Fund

NORD's Rare Disease Research Grant program helps to fund research on

rare diseases. When the monies in a specific disease research fund

total $35,000, NORD starts the process of locating and funding a

scientist to research a specific disease. NORD's PLS Research Fund

contains $14,295 as of August 20, 2000. We need $20,705 to begin

funding PLS research. And we must raise the money. After $35,000 is

raised, NORD will take out ads in medical publications (at least 3)

announcing that there are funds available for a grant on PLS. It will

prepare a small brochure that will be mailed to one of its existing

in-house lists of researchers, and to other lists of researchers

obtained from a list service. NORD's Request for Proposals will ask

for abstracts of each proposal, including a letter of intent, a one

page abstract, a reason for funding, the curriculum vitae of the

researcher, and brief budget outline. All proposals received by NORD

are sent to its Medical Advisory Board (MAB) for review. The MAB is

composed of leading academic scientific experts. They select the top

proposals and then ask for a complete proposal from each of the

finalists. Researchers send their complete proposals to NORD which

then distributes them to its MAB for their final review. The MAB uses

the National Institutes of Health reviewing standards in reaching its

decisions on issuing grants. By encouraging research applicants to

compete against each other, NORD's Research Grant Program funds

only

the best proposals that are most likely to result in research

breakthroughs that can be applied to the diagnosis or treatment of

people with rare disorders. Donate to NORD

1- www.rarediseases.org

Turn $1 into $2--for amounts up to $4,000 The original challenge by

Mark Weber was met with an additional challenge by Thomson,

Joe Alberstadt and an anonymous donor. Each challenger put up a

promise of $1,000 to be paid when donations made reached that point.

Each of the four $1,000 challenges has been met and matched as of

August 4th. A big thank you to all who met the challenge! Now a new

PLS Challenge: Dolores Carron has made a challenge in memory of her

mother who passed away last September. For every $1 donated by

September 28th, 2000, Dolores will match dollar for dollar,

when$2,000 is raised Dolores with send in her $2,000.. Let's all

help Dolores meet her goal and honor her very special mother. For a

donation to be doubled, it must be accompanied by a note indicating

that the donation is restricted to the " PLS Research Fund " and

the " PLS Carron Challenge " . NORD's address is: P.O. Box 8923 New

Fairfield, CT 06812-8923 Phone If we all pitch in,

we'll all win.

Update: $1,255 has been rec'd by NORD towards the Carron challenge.

Only $745 more to go!

Shop with Pages that Pay merchants (At the top of the home page)

These merchants will pay us 1% to 22% for every purchase made thru

the PLS Awarenss website. Remember to bookmark this site for easy

access to them. Tell your friends and family. All monies raised go

directly to the NORD/PLS fund. I will update the amount earned thru

pages that pay on a regular basis. Current earnings are: $204.87 thru

8/22/00. For only a few months we are doing pretty good. Remember,

Shop until you drop!

We've registered with Carebar.org and have begun our fundraising

efforts via the Internet. Carebar™ is a resourcebar that works

with

your favorite Internet browser to make your Internet surfing more fun

and productive. The Carebar has links to news, weather, sports as

well as searching, shopping and much, much more. You can even order

food or listen to your favorite radio station directly from the bar.

But the best part is that we get 70% of any revenue generated from

the bar. So every time you check the weather, search the web or even

order a pizza, you help us raise money. So go to Carebar.org and

download Carebar today. It'd be a big help!

From one PLSer: Write a letter to your local newspaper, hit up

some service clubs, (Rotary, Lions, Kiwanis, etc.), and I will

definitly be first in line when my bank sets up their " Dress down for

Charity " list next year. Too late for this year. A little

imagination can make great things happen. First, you have to

believe. And this is one of those special things that come from

small towns. Everyone knows you and that is a definite plus. I

started my personal fund drive today. So far it is only in my head,

but it is started. Let's go get them. I have a goal in mind. If I

reach it I will let you know. I gave myself until December.

Use matching funds from your employer to make your donation worth

more. One PLSers was able to make a donation and it was matched by

his employer, the total donated amounted to a whopping $2,500! Way

to go!

Make a Challenge of your own to friends and family. Offer to match

their donation to NORD dollar for dollar. Talk to to

set this up at NORD 1-.

Make a small card that tells breifly about our NORD/PLS research

fund, list the NORD phone #', website address and mailing address.

Put one in all correspondence or hand out to friends and family,

requesting that they remember our cause when doing their year end

giving, at birthdays, anniversaries, when they are donating through

United Way at work, etc, etc. Use your imagination!

Have a yard sale Ask friends, family or neighbors to help with a

rummage sale. Add a bake sale in with it. Each person bringing

items for sale can code their items with colored stickers. Add up

the money at the end of the day, each person receives the money from

the sales of their " color " . They then donate the money to NORD/PLS

fund and receive a tax deduction for their efforts! Ask your church

or community center for parking lot sale if you aren't able to have

sales in your neighborhood.

> I would appreciate any other thoughts on tests, clinical

experiments

> or drugs (I have been taking Rilutek for 3 years.) Stem cell

research

> sounds the most promising for a cure

> I would like to make a challenge gift to the NORD project and would

> like to know exactly how to do this. Since we just had a new member

> named Steve, I'll go by Steve W and we can call it the " Dubya

> Challenge "

> Steve W

[Guest guest]

Regarding the NORD Carron Challenge--I just spoke with them today and as of

4PM on Thursday afternoon (Sept. 7, 2000), they only had $1455 in my fund.

I don't know who said there was only $100 left to go, but that is not the

info they have given me. Incidentally, my challenge is for give or take

$2,000. I am prepared to exceed that amount if necessary.

Dolores Carron

Re: My first posting

Hi Steve W,

Welcome to our group. I was out of town when you posted so am just

now catching up with everything. I'm really pleased that you are

making a NORD challenge. I just rec'd an email from one of the

PLSers whose daughter wanted to donate to the NORD/Carron challenge

but that all that was left of it was $100. I wasn't able to verify

the status of that challenge but passed on the info that she could

designate her donation to the " Dubya challenge " . Hope that is ok by

you! It is really great that you are doing this as we need to keep

the fundraising going. We've made great progress so far but we still

have a long way to go. I'm copying a page from the fundraising

website regarding NORD donations and challenges. You can go to the

website at: www.geocities.com/mdmfoo/pls.html If you need further

info you can always call at NORD.

I think you are right on the stem cell research being the best

hope. Have you seen the 60 minute segments on the ALS Therapy

Development Foundation? I've been in touch with the Heywoods and

they are certainly determined to find an answer. There is a link to

them on the website.

I am sorry your baclofen pump hasn't worked out better for you. I

just had one inplanted two months ago. I'm really pleased with the

improvement I've had with my walking and my speech. I guess everyone

of us reacts differently. I just had my second dose adjustment so am

now at 60 mcg per day. My doc wants to take his time with the

increases so I don't have an adverse effect so we are just doing 10%

at a time. I also have the weak tongue problem. It is amazing how

the baclofen pump helps my speech. When I get tired or talk too long

it gets bad again, but I'm not complaining!

Here is the page with the NORD info:

How can you help?

HOME

Fund Raising Ideas/for NORD-PLS Research Fund

NORD's Rare Disease Research Grant program helps to fund research on

rare diseases. When the monies in a specific disease research fund

total $35,000, NORD starts the process of locating and funding a

scientist to research a specific disease. NORD's PLS Research Fund

contains $14,295 as of August 20, 2000. We need $20,705 to begin

funding PLS research. And we must raise the money. After $35,000 is

raised, NORD will take out ads in medical publications (at least 3)

announcing that there are funds available for a grant on PLS. It will

prepare a small brochure that will be mailed to one of its existing

in-house lists of researchers, and to other lists of researchers

obtained from a list service. NORD's Request for Proposals will ask

for abstracts of each proposal, including a letter of intent, a one

page abstract, a reason for funding, the curriculum vitae of the

researcher, and brief budget outline. All proposals received by NORD

are sent to its Medical Advisory Board (MAB) for review. The MAB is

composed of leading academic scientific experts. They select the top

proposals and then ask for a complete proposal from each of the

finalists. Researchers send their complete proposals to NORD which

then distributes them to its MAB for their final review. The MAB uses

the National Institutes of Health reviewing standards in reaching its

decisions on issuing grants. By encouraging research applicants to

compete against each other, NORD's Research Grant Program funds

only

the best proposals that are most likely to result in research

breakthroughs that can be applied to the diagnosis or treatment of

people with rare disorders. Donate to NORD

1- www.rarediseases.org

Turn $1 into $2--for amounts up to $4,000 The original challenge by

Mark Weber was met with an additional challenge by Thomson,

Joe Alberstadt and an anonymous donor. Each challenger put up a

promise of $1,000 to be paid when donations made reached that point.

Each of the four $1,000 challenges has been met and matched as of

August 4th. A big thank you to all who met the challenge! Now a new

PLS Challenge: Dolores Carron has made a challenge in memory of her

mother who passed away last September. For every $1 donated by

September 28th, 2000, Dolores will match dollar for dollar,

when$2,000 is raised Dolores with send in her $2,000.. Let's all

help Dolores meet her goal and honor her very special mother. For a

donation to be doubled, it must be accompanied by a note indicating

that the donation is restricted to the " PLS Research Fund " and

the " PLS Carron Challenge " . NORD's address is: P.O. Box 8923 New

Fairfield, CT 06812-8923 Phone If we all pitch in,

we'll all win.

Update: $1,255 has been rec'd by NORD towards the Carron challenge.

Only $745 more to go!

Shop with Pages that Pay merchants (At the top of the home page)

These merchants will pay us 1% to 22% for every purchase made thru

the PLS Awarenss website. Remember to bookmark this site for easy

access to them. Tell your friends and family. All monies raised go

directly to the NORD/PLS fund. I will update the amount earned thru

pages that pay on a regular basis. Current earnings are: $204.87 thru

8/22/00. For only a few months we are doing pretty good. Remember,

Shop until you drop!

We've registered with Carebar.org and have begun our fundraising

efforts via the Internet. CarebarT is a resourcebar that works

with

your favorite Internet browser to make your Internet surfing more fun

and productive. The Carebar has links to news, weather, sports as

well as searching, shopping and much, much more. You can even order

food or listen to your favorite radio station directly from the bar.

But the best part is that we get 70% of any revenue generated from

the bar. So every time you check the weather, search the web or even

order a pizza, you help us raise money. So go to Carebar.org and

download Carebar today. It'd be a big help!

From one PLSer: Write a letter to your local newspaper, hit up

some service clubs, (Rotary, Lions, Kiwanis, etc.), and I will

definitly be first in line when my bank sets up their " Dress down for

Charity " list next year. Too late for this year. A little

imagination can make great things happen. First, you have to

believe. And this is one of those special things that come from

small towns. Everyone knows you and that is a definite plus. I

started my personal fund drive today. So far it is only in my head,

but it is started. Let's go get them. I have a goal in mind. If I

reach it I will let you know. I gave myself until December.

Use matching funds from your employer to make your donation worth

more. One PLSers was able to make a donation and it was matched by

his employer, the total donated amounted to a whopping $2,500! Way

to go!

Make a Challenge of your own to friends and family. Offer to match

their donation to NORD dollar for dollar. Talk to to

set this up at NORD 1-.

Make a small card that tells breifly about our NORD/PLS research

fund, list the NORD phone #', website address and mailing address.

Put one in all correspondence or hand out to friends and family,

requesting that they remember our cause when doing their year end

giving, at birthdays, anniversaries, when they are donating through

United Way at work, etc, etc. Use your imagination!

Have a yard sale Ask friends, family or neighbors to help with a

rummage sale. Add a bake sale in with it. Each person bringing

items for sale can code their items with colored stickers. Add up

the money at the end of the day, each person receives the money from

the sales of their " color " . They then donate the money to NORD/PLS

fund and receive a tax deduction for their efforts! Ask your church

or community center for parking lot sale if you aren't able to have

sales in your neighborhood.

> I would appreciate any other thoughts on tests, clinical

experiments

> or drugs (I have been taking Rilutek for 3 years.) Stem cell

research

> sounds the most promising for a cure

> I would like to make a challenge gift to the NORD project and would

> like to know exactly how to do this. Since we just had a new member

> named Steve, I'll go by Steve W and we can call it the " Dubya

> Challenge "

> Steve W