Re: Into/jennifer movie/stem cells

[Guest guest]

Hi ,

I'm so sorry to hear about you mother, but I received an email saying the shot was like being on a transplant list. I have the same question you did about the voice. I know of no ALS person whose voice has not been affected. I met several people with PLS who talk just fine though. You mentioned your mother went down hill fast, how long did it take for a diagnosis. I have not been diagnosis yet. My foot drags occasionally when I don't concentrate, and my voice slurs when I'm tired. How did your mother's happen, and at what rate did she go down hill? Did it take her months, or a year? The reason I'm curious is because a year ago, I first noticed my symptoms, and I'm still living a normal life; however I received a call that my spinal fluid was abnormal, and I'm trying to figure out my future. Any help you have time to give me would be deeply appreciated. Especially when it refers to the time progression of the disease.

My prayer are with you,

Donna

Into/jennifer movie/stem cells

hi there, This is my first post. I take care of my mom who was diagnosed with ALS 8/99 she has gone down hill pretty quickly and she has pretty much said she will not make it to her 50th birthday (a year and a half away). She does not want a bi-pap, trak (sp?), feeding tube, or anything that keeps her alive longer than she can do on her own. Anyway, I saw the movie tonight too and I thought it was a great movie. I was only surprised that her voice was still as good as it was in the movie. I know that with some people it is different, but I have not seen many people that had a voice that was still good. My mom is really hard to understand now she is getting a voice translator machine Monday and that should help some. I would hope that stem cells are going to be tested on humans soon. But I wonder when the movie was made because they were still saying 9months to a year. I like the idea of stem cells being used but I know there is a lot of arguments about the stem cells and I can not help but wonder if that might stop/slow things down. That is all for now

[Guest guest]

,

Blessings to you and your mom. I am so very sorry that she is not doing so

well. I was surprised with 's voice too, as I know that is not the

usual.

I really wish the Stem Cell " shot " would hurry up and get here too.

(((((Hugs))))) to you and your mom. I'll pray for both of you.

Laurel

Into/jennifer movie/stem cells

> hi there,

> This is my first post. I take care of my mom who was

> diagnosed with ALS 8/99 she has gone down hill pretty quickly

> and she has pretty much said she will not make it to her 50th

> birthday (a year and a half away). She does not want a bi-pap,

> trak (sp?), feeding tube, or anything that keeps her alive longer

> than she can do on her own.

>

> Anyway, I saw the movie tonight too and I thought it

> was a great movie. I was only surprised that her voice was still

> as good as it was in the movie. I know that with some people it

> is different, but I have not seen many people that had a voice

> that was still good. My mom is really hard to understand now

> she is getting a voice translator machine Monday and that

> should help some.

>

> I would hope that stem cells are going to be tested on humans

> soon. But I wonder when the movie was made because they

> were still saying 9months to a year. I like the idea of stem cells

> being used but I know there is a lot of arguments about the

> stem cells and I can not help but wonder if that might stop/slow

> things down.

>

> That is all for now

>

>

>

>

>

>

>

[Guest guest]

My mom noticed it in her hand first. She was having problems using the

computer/mouse. She never had her spinal fluid tested so she does not

know about that. She suggests thatyou get your doctor to sign you over to

a nerologist. Hope this helps

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

Look into the past, you could see the future!

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

http://www.visi.com/~design1

> Hi ,

> I'm so sorry to hear about you mother, but I received an email saying the shot

was like being on a transplant list. I have the same question you did about the

voice. I know of no ALS person whose voice has not been affected. I met

several people with PLS who talk just fine though. You mentioned your mother

went down hill fast, how long did it take for a diagnosis. I have not been

diagnosis yet. My foot drags occasionally when I don't concentrate, and my

voice slurs when I'm tired. How did your mother's happen, and at what rate did

she go down hill? Did it take her months, or a year? The reason I'm curious is

because a year ago, I first noticed my symptoms, and I'm still living a normal

life; however I received a call that my spinal fluid was abnormal, and I'm

trying to figure out my future. Any help you have time to give me would be

deeply appreciated. Especially when it refers to the time progression of the

disease.

> My prayer are with you,

> Donna

> Into/jennifer movie/stem cells

>

>

> hi there,

> This is my first post. I take care of my mom who was

> diagnosed with ALS 8/99 she has gone down hill pretty quickly

> and she has pretty much said she will not make it to her 50th

> birthday (a year and a half away). She does not want a bi-pap,

> trak (sp?), feeding tube, or anything that keeps her alive longer

> than she can do on her own.

>

> Anyway, I saw the movie tonight too and I thought it

> was a great movie. I was only surprised that her voice was still

> as good as it was in the movie. I know that with some people it

> is different, but I have not seen many people that had a voice

> that was still good. My mom is really hard to understand now

> she is getting a voice translator machine Monday and that

> should help some.

>

> I would hope that stem cells are going to be tested on humans

> soon. But I wonder when the movie was made because they

> were still saying 9months to a year. I like the idea of stem cells

> being used but I know there is a lot of arguments about the

> stem cells and I can not help but wonder if that might stop/slow

> things down.

>

> That is all for now

>

>

>

>

[Guest guest]

Donna,

Your request for info on progression time of ALS/PLS

is one even ALS specialists can't answer. Some people

die within 6 months, others live 20 years or more.

There are some statistice on the ALS Survival Guide

http://www.lougehrigsdisease.net/als_vital_stats.htm

50% of ALS patients die within 18 months of diagnosis.

80% of ALS patients die within 5 years of diagnosis.

10% live more than 10 years.

PLS is another big question mark. The average course

of PLS is 20 years, but can vary greatly. Since most

PLSers develop the disease later in life, a 20 year

span does not normally shorten their life. But for a

person with onset earlier in life, it might be a

different story. There is also another issue

involved.

The truth of the matter is that there is not widely

accepted (or followed) diagnostic criteria of what PLS

is. Recent posts regarding studies of 20 PLSers in

Paris (Does PLS Exist) compared with the 10 patient

study in the Netherlands (Primary lateral sclerosis:

clinical, neurophysiological, and magnetic resonance

findings) is a good example.

In the Paris study, all participants showed some kind

of pseudobulbar symptoms (dysarthria and compulsive

laughing or crying). The criteria was: " the main

clinical feature was a tetrapyramidal syndrome (tetra

means 4) with hyperactive deep tendon reflexes and

bilateral Babinski and Hoffman signs. In the

Netherlands study, while saying that the eventual

development of pseudobulbar symtpoms was necessary in

a PLS diagnosis, only half of the participants

actually showed pseudobulbar symptoms. And one person

in the study that showed no pseudobulbar symptoms had

a disease duration of 35 years. But the report

states: " The main finding in all patients was severe

spasticity with accompanying corticospinal tract signs

such as hyperreflexia, Babinski's sign, pseudobulbar

reflexes, and masseter hyperreflexia. " They say " such

as " , not that they showed all of these signs. Later

in the report: " Hereditary spastic paralysis was ruled

out by a meticulous family history. " HSP causes

" severe spasticity with accompanying corticospinal

tract signs such as hyperreflexia " and as stated in

Dr. Fink's paper: " it is an important element in the

diagnosis of uncomplicated HSP that the upper

extremities, speech, swallowing, and cranial nerves

remain functionally normal. " We have learned that HSP

can and does occur sporadically. So are the 5

patients in the Netherland study that did not develop

bulbar symptoms a more benign PLS or are they a

sporadic form of HSP? Is HSP really a form of PLS?

Is PLS really a form of ALS. There is now concrete

evidence of a genetic link to ALS thanks to Dr.

Siddiques discovery of the first PLS gene. Will they

find subsequent links to HSP?

Until some of these questions are answered, the

prognosis for PLS will be cloudy. How can anyone say

what the progression will be when there are possibly

two groups of people being included in the study? I

think it is important to develop firm diagnostic

criteria that is recognized globally. If it is found

that there are two PLS syndromes, then studies need to

be targeted at one syndrome or the other, not a mixed

bag.

Just my humble opinion!

=====

Thomson, Solana Beach, CA

www.geocities.com/mdmfoo/pls.html

__________________________________________________

[Guest guest]

:

It's so good that you're actively interested and asking questions that may help your mom. I know my family's interest and support gives me a boost like nothing else could.

In the support group of about 8 ALSers that I go to (Plano, TX) only one has voice problems, and they all have different lengths of time since dx. Go figure.

About the movie, check out the website http://www.projectals.org

in Texas

[Guest guest]

Dear ,

Thanks so much for your help. I just got out of the hospital for a five day treatment of MS. That is what they think I have. A tad better that the alternative, but still not good. Thanks for all your help and support, keep up the wonderful work.

Donna

Re: Into/jennifer movie/stem cells

Donna, Your request for info on progression time of ALS/PLSis one even ALS specialists can't answer. Some peopledie within 6 months, others live 20 years or more. There are some statistice on the ALS Survival Guide http://www.lougehrigsdisease.net/als_vital_stats.htm50% of ALS patients die within 18 months of diagnosis.80% of ALS patients die within 5 years of diagnosis.10% live more than 10 years.PLS is another big question mark. The average courseof PLS is 20 years, but can vary greatly. Since mostPLSers develop the disease later in life, a 20 yearspan does not normally shorten their life. But for aperson with onset earlier in life, it might be adifferent story. There is also another issueinvolved.The truth of the matter is that there is not widelyaccepted (or followed) diagnostic criteria of what PLSis. Recent posts regarding studies of 20 PLSers inParis (Does PLS Exist) compared with the 10 patientstudy in the Netherlands (Primary lateral sclerosis:clinical, neurophysiological, and magnetic resonancefindings) is a good example. In the Paris study, all participants showed some kindof pseudobulbar symptoms (dysarthria and compulsivelaughing or crying). The criteria was:"the mainclinical feature was a tetrapyramidal syndrome (tetrameans 4) with hyperactive deep tendon reflexes andbilateral Babinski and Hoffman signs. In theNetherlands study, while saying that the eventualdevelopment of pseudobulbar symtpoms was necessary ina PLS diagnosis, only half of the participantsactually showed pseudobulbar symptoms. And one personin the study that showed no pseudobulbar symptoms hada disease duration of 35 years. But the reportstates:"The main finding in all patients was severespasticity with accompanying corticospinal tract signssuch as hyperreflexia, Babinski's sign, pseudobulbarreflexes, and masseter hyperreflexia." They say "suchas", not that they showed all of these signs. Laterin the report: "Hereditary spastic paralysis was ruledout by a meticulous family history." HSP causes"severe spasticity with accompanying corticospinaltract signs such as hyperreflexia" and as stated inDr. Fink's paper:"it is an important element in thediagnosis of uncomplicated HSP that the upperextremities, speech, swallowing, and cranial nervesremain functionally normal." We have learned that HSPcan and does occur sporadically. So are the 5patients in the Netherland study that did not developbulbar symptoms a more benign PLS or are they asporadic form of HSP? Is HSP really a form of PLS? Is PLS really a form of ALS. There is now concreteevidence of a genetic link to ALS thanks to Dr.Siddiques discovery of the first PLS gene. Will theyfind subsequent links to HSP?Until some of these questions are answered, theprognosis for PLS will be cloudy. How can anyone saywhat the progression will be when there are possiblytwo groups of people being included in the study? Ithink it is important to develop firm diagnosticcriteria that is recognized globally. If it is foundthat there are two PLS syndromes, then studies need tobe targeted at one syndrome or the other, not a mixedbag.Just my humble opinion!===== Thomson, Solana Beach, CAwww.geocities.com/mdmfoo/pls.html__________________________________________________

[Guest guest]

Donna, I am so very glad to hear it's probably MS! I am so glad there is

treatment and hope it works well. Keep us posted. Lavon

[Guest guest]

Thanks so much Lavon, I've been with all of you through my dx and appreciate all of your help. My best to you as well.

Donna

Re: Into/jennifer movie/stem cells

Donna, I am so very glad to hear it's probably MS! I am so glad there is treatment and hope it works well. Keep us posted. Lavon