RollCall for PALS
 

RollCall

(ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease are referred to as ALS/MND
PALS is short for People (or a person) with ALS.

tell us your name
where your from
when you were dx
anything you want
tell us how your doing
what your doing


Rollenanruf für KUMPEL
llamada del rodillo para los PALS
richiesta del rullo per i PALS
chamada do rolo para PALS
الاسماء يطالبون
友達のためのロールコール
PALS를 위한 검열소집
唱名对友
Roll Call for PALS

please sound off here and tell us how your doing with ALS/MND we would like to hear from you.

bitte weg hier klingen und uns, wie dein Tun erklären mit ALS/MND wir von dir hören möchte.

sonar por favor apagado aquí y decirnos cómo el tu hacer con ALS/MND nosotros quisiera oír de ti.

suonare prego fuori qui e dirci come vostro fare con ALS/MND noi vorrebbe sentirsi da voi.

soar por favor fora aqui e dizer-nos como seu fazer com ALS/MND nós gostaria de se ouvir de você.

يرجي من الصوت ومن هنا نقول ان العمل بها مع تعيين والفرقه واود ان اسمع منك.

ALS/MNDとあなたのすることが私達あなたからいかに聞くことを望むかここに鳴り、私達に言いなさい。

请告诉我们这里良好的产,你做441/我们要多听听你们.
Background on ALS


Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, is a progressive, degenerative disease of the nervous system. ALS is within the group of diseases called motor neuron diseases (MND), in which specialized nerve cells that control movement of the voluntary muscles gradually cease functioning and die. These specialized nerve cells are called motor neurons. They carry impulses from the brain to the brainstem and spinal cord. The impulses are then carried to the muscles. The muscles respond to these impulses by contracting or relaxing, depending on the desired voluntary movement. In ALS and other motor neuron diseases, the muscle tissue deteriorates from a lack of stimulation by the nerve cells. This results in progressive weakness, atrophy, and often spasticity (excess muscle tone). In motor neuron disease, only the motor neurons are affected, therefore other neurons, such as the sensory neurons bringing information from the sense organs, remain intact and unaffected.

hello im Bobby B.
from north carolina,
pals dx/94.
im in a wheelchair 6 yrs.


https://www.rareearth.com/images/an12.gif

Alper Kaya MD
Ophthalmologist
45 M
PALS dx 1990, limb onset
PWC Lifestand LSC (1999), Trach, BIPAP(2004)
Onscreen keyboard (ScreenDoors/Madentec) for typing
Eating, speaking still ;-)
Izmir/Turkey
So far so good ;-)

Rob
Pals,dx July 2002
No use of arms/hands,wheelchair,PEG,trache.
Still fighting on!

Still kicking
 

Joel Cutler, 54
Symptoms started Dec04 or Jan05
DX Aug 05 limb onset. Left hand first then right.
I was monitored and given 2 years. Found Glutathione and still kicking! Deterioration slowed down immensely, was supposed to be immobile Dec05 - still functioning quite well.
Down to 1 finger on each hand to type, but still getting around on my own!

hello. How this it work? I don´t undertand anything. sorry

hello. What this is for? I understand nothing.

hola el magaro, espera que todo sea bueno con ti. apenas decirnos sobre se aquí. cómo estás haciendo. es justo dejó el mundo conocernos aquí está esperando la curación. decirnos que seas, de donde tu, cuánto tiempo has tenido als/mnd. gracias BOBBY


nombre de donde tu cuando eras dx/als/mnd cómo el tu hacer y qué el tu hacer drogas, sillón de ruedas, respiradero, clavija él tu del níquel opinión tan qué deseas por favor

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ROLLCALL

tell us your name
where your from
when you were dx
anything you want
tell us how your doing
what your doing

John 56,
Symptoms started March 04, dx August 05. limb onset arms and weak neck, can still walk abit. Live in Melbourne Australia.
Take each day and live the best you can.

Jeannie age 28
Limb Onset June 2000
Dxed July 2001
UK

My blog http://jeannie-world.blogspot.com/

My website http://uk.geocities.com/jeannie_25als@btinternet.com/

ALS/MND CHATROOM http://client1.sigmachat.com/sc.pl?id=144320

DannyD
Leander, TX
47 y/o
Bulbar onset, slow progression, still walking & driving:
Mainly Upper Motor Neuron; Spasticity and No Balance
Symptoms 3/97; Dx 12/00; Cane 1/03; BiPAP 9/03 AFO 4/05; Walker 5/05;

"Strength does not come from physical capacity. It comes from indomitable will." Gandhi

Dave, Los Angeles CA
Limb onset (hands), Symptoms 2003, dx. 2/2006
Hands continue to weaken; some atrophy in arms and shoulders. Still walking, talking, eating and breathing. Living each day best I can.

My name and more
Fotios Tzimas
46 years
Hellas Greece
dx march 2004 bulbar
fast progress now is everywhere
wheelchair 2005
since 22 april 2006 i write with head mouse smart nav and Skeleton Key
keyboard
more about me www.als-net.gr
Geia hara Fotios :cool:

Wally is 39 years old
living in Northeastern New York
dx'd 9/02 limb onset
Wally is also non-verbal autistic and has epilepsy
In wheelchair and on Bi-Pap and oxygen concentrator
taking Namenda and Lithium Carbonate to block glutamate
and on several vitamins and minerals
Also using Enemeez (Docusate sodium) everyday for severe constipation.

Hello from skimbrell2
 

Hi Fotios

Did you have the treatment in China back in 08/04?

Sheila Kimbrell
Daughter of Foye Thornton

Colin
dxd may 2006
bulbar onset may 2003
speech almost gone plus hands and right arm also legs very weak
still getting about have quality of life....yahoo...:)

MarkNH
New Hampshire
First Sx November 2002
Diagnosed March 2003
Severe leg muscle atrophy. Manual w/c and crutches.
Fasc's overall including tongue.
Still working, driving, living differently but fully!

Hello I'm Lisag wife of Gary..
Diagnosed 1999 with bulbar onset ALS
Ventilator dependent since 2004 but can come off for showers etc..

first symptoms-- May 2001
lots of tests
three different neurologists
blah blah blah -- yada yada yada
wheelchair -- January 2004
bi pap-- March 2005
today -- great family and friends, things could be worse, on the whole my life -- o-- meter is still registering on the plus side.

T U C K E R
 

tucker, Los Angeles CA
Limb onset (all), Symptoms 2004, dx. 2/2005
i have Stephen Hawking's Desease (everybody wants to call it lou gehrig's but lets face it - he's hardly a good role model - being dead and all)*my limbs aren't that hot - sadly my clever little hands went first - and since i already made my living on the computer,* i saw which way the wind was blowing and got iListen voice recognition,* smartnav headpointing gear and - keystrokes.* Voila!* back to work!* Now if only i could do handspring again!
big love to you all!

Hello
 

Mary Fran..dx 1998...PC, Peg, Trache, Vent 2002...progression slowed way down after vent....I pretty much follow the same diet as Rama...I still eat by mouth..using peg for water...can be off vent 1 to 2 hrs....still talking....I have use of hands..limited....recently aquired compression boots ..I love them...
I enjoy everyday....I am so happy to have this web site....Mary:)

Terry
 

tell us your name Terry

where your from Virginia

when you were dx July 15, 2003
About a year before DX, my left hand began to weaken & the arm eventually began to atrophy - that's when I headed to the doctor, they always have bad news, that's why I never went except for emergencies prior to this

progression has been steady and unrelenting, I am now in a wheelchair with little to no leg strength, I can help in transfers a little.

what your doing - living on the side of a mountain doing my best to enjoy what I can

Thank you to the administrators and mediators of the site .
 

New here.
 

Hi, my name is Mark Sullivan, and I was dx'd with ALS last March. I knew what I had for several months, but didn't have the guts to face up to it.

Does anyone here remember Kevin or Kassie Sullivan from another chat room. I think it was Steve's, but not sure.

Kevin was my dad, and he passed away, but he also had ALS. I know my mom got to know a lot of great people but I just didn't pay enough attention at the time.

I'm glad I found this place. I looked for the other chat room, but couldn't find it.

See you around.

Mark

Welcome
 

WELCOME MARK
I KNOW ALOT OF FOLKS ARE STILL AROUND FROM STEVE'S CHATROOM THAT REMEMBER YOUR FAMILY VERY WELL AND WILL BE HAPPY FOR THE UPDATES. SORRY TO HEAR YOU HAVE ALS.. :Sigh: :mad: HOW ARE THE GIRLS DOING AND THE LITTLE ONE(SORRY FORGOT HIS NAME)?

[IMG]http://img405.imageshack.us/img405/748/bobms1qm5.jpg[/IMG]

Here Sir!
 

Hey, This is Steve in Fayetteville NC, aka swhite.geo, or AFAMMOSteve (USAF+job+Steve), dx'd 7/2002, Permobil Chairman Entra 3 years, PEG 11/06, slow progression, until the last 6 months or so. Also had emergency appendectomy last month, cardiac catheterization a year ago, also malignant melanoma removed the same month as my dx, at age 39.

Anyone tried colonic irrigation? I have an RN that's getting her 2nd of 3 (for price of 2-$150) treatments Friday, after having bowel problems... I'm considering it.

Last Thursday, my next older brother was t-boned at an intersection, driver's side, he had traumatic brain injury, yet to wake up, getting trach today.

Prayers appreciated!!

Thanks Bobby, for your hard work here! :(

http://steveayse.spaces.live.com

Hi,

New to the forums.
I am a 45 yr old female. dx Dec.2007 with ALS
Lower limbs only, cannot walk without cane and braces. Other than that, no other symptoms yet. I am talking various supplements and vitamins, as well as drinking lots of water, which has seemed to have diminished the fasc... "twitching" in my muscles.
I am searching all the various ALS sites for information on this ugly disease.
EJW

What is glutathione?

Bill in Salt Lake City. First symptoms in 98 after I had an head injury.

Hello, i'm Cheryl from Salem, OR. 50 yrs
DX sept 06 bulbar onset
can't talk eat or walk
bipap 10/06
feeding tube 11/06
wheel chair 6/07

Hello, i'm Cheryl from Salem, OR. 50 yrs
DX sept 06 bulbar onset
can't talk eat or walk
bipap 10/06
feeding tube 11/06
wheel chair 6/07

Hi Cheryl and welcome to Neuro Talk..specifically to this ALS forum. I copied and pasted your introduction here so I could reply to it. This forum is read by multitudes of people...compassionate people and probably some curious people too. :wink:

I just wanted to say Hi and let you know that I "heard" you. :grouphug:

I'm new to neurotalk
 

hi I've recently joined and want to introduce myself. I was diagnosed August of 06,my progression has been more or less quick. since around that time I have lost all use of my legs, my left arm is almost gone, my neck muscles can't hold up my head anymore, my swallowing is weak, I have a peg, I have to use my bipap 24/7 now. my speech is now getting weak. I try to keep positive and still do quite a bit of routine household chores in a powerchair and I still have use of my right arm with arm braces.

still alive and well

http://www.patientslikeme.com/upload...7/DSC02661.jpg

Diet
 

I am really interested to read the dietary issue. How would you or where would you suggest I go for guidance on this issue. Thanks for your post. I am totally new here, Richard.

New to the Game :)
 

Richard
Aotearoa NZ
09/2011
Love :) Ideas, Encouragement and Laughter.
Today, I am doing fine. I can ride my bike, just bought a stationary one :) It gets me exercising in the rain and cold and I love the aerobic work out.
I am continuing with my film, photography and writing. I am editing a feature length Doc but finding my hands don't always like the mouse. I continue to photograph but need to pay attention. My writing is a god send, I blog often and love it. Essays, my memoir and other 'stuff'. I am able to slowly walk round the block and do better on uneven surfaces such as grass. I can still drive but pay attention to tiredness.

Diet
 

many thanks for your posting rama, i am interested in the actual diet, i know i feel much better when I change my diet but I need some guidance, who did you approach? All the best and please, keep posting, Richard.