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living with als

Tammie1

For The Speaking Impaired!

Paul1225
  • By Paul1225 · New reply August 30, 2010
  • Discussion in Familial ALS · 2 replies
  • Hello. My name is Paul and I have ALS. I cannot speak, and communicating with caregivers and medical professionals was frustrating. I came up with a simple and inexpensive idea, which has aided me tremendously ...

End Game?

mike405
  • By mike405 · New reply August 30, 2010
  • Discussion in Children and families · 9 replies
  • This may be an uncomfortable subjct yet I'm curious to know if some have given thought to the "end game" (as I refer to it) I was diagnosed with Bulbar ALS a little over a year ago and consequently learned ...

Ventilators & Power Wheelchairs

FDLeyda
  • By FDLeyda · New reply August 30, 2010
  • Discussion in ALS and the military · 7 replies
  • I would like to talk to Veterans who use Ventilators or Power Wheelchairs. I am a Veteran who uses both. FDLeyda ...

A few more words about privacy

Brian
  • By Brian · New reply August 27, 2010
  • Journal · 76 replies
  • All of us at Inspire care a great deal about your privacy and work hard to ensure the information you trust us with is kept safe. We designed Inspire so that you have complete control over how your personal ...

Help for the Speaking Impaired!

Paul1225
  • By Paul1225 · Posted August 26, 2010
  • Journal · 0 replies
  • Hello. My name is Paul, and I have ALS. I cannot speak. I broke my hip, and I couldn't communicate with doctors, nurses, health care providers, etc. I invented an inexpensive and unique way to assist ...

Progressive Bulbar Palsy? ALS?

Fighting4Momma
  • By Fighting4Momma · New reply August 26, 2010
  • Journal · 4 replies
  • My mom started having bulbar symptoms around summer of 2009. Finally, she was send to UVA in Charlottesville Va and was diagnosed with Progressive Bulbar Palsy in January 2010. We were told by many people ...

Does it start like this?

Brandyburke
  • By Brandyburke · New reply August 14, 2010
  • Discussion in National ALS Advocacy Day · 4 replies
  • I'm sorry to trouble anyone - I've not been able to find much reliable research online (stories from surviving members etc) and I hate to intrude, but I have a question. Beginning Monday I started having ...

help

Matias
  • By Matias · New reply August 13, 2010
  • Discussion in Familial ALS · 2 replies
  • My grandfather died of ALS, now my dad is staring to get some of the symptoms... we dont have isurance or money to test and verify if he has it or not. I live in Houston,TX. My email is matuccio02@hotmail.com ...

Something More

an_angel_over_me001
  • By an_angel_over_me001 · New reply August 7, 2010
  • Discussion in Children and families · 6 replies
  • My granddad just passed within the last 4 months and as i observed him decline i realized that something more needs to be done for this terrible disease. Also something for the caregivers. Alot of the ...

PEOPLE, PLEASE TELL ME HOW YOU KNOW THE END IS NEAR!

hopeful_relative
  • By hopeful_relative · New reply August 4, 2010
  • Discussion in Children and families · 12 replies
  • He struggles to breathe. Can no longer lay down in his bed and is now in his chair 24/7. The only thing he eats is maybe one ensure a day or one jello. Water intake is good. Some days it looks like he ...

My Mom

mymotherwithals
  • By mymotherwithals · New reply August 3, 2010
  • Journal · 4 replies
  • She has ALS and has started biting her lower lip...mouth guards seem to gag her and don't stay in..I would appreciate any suggestion that might help. Bernadee ...

My Mom

mymotherwithals
  • By mymotherwithals · New reply August 2, 2010
  • Journal · 3 replies
  • She has ALS and is now biting her lower lip, mouth guards seem to gag her..any suggestions that might help would be greatly appreciated ...

Looking for siblings of people with ALS

TRAVELGIRL
  • By TRAVELGIRL · New reply July 29, 2010
  • Discussion in Children and families · 5 replies
  • I would like to start a monthly conference call to support other siblings of people with ALS and as a support for myself. Is anyone out there interested in attending? Let me know and I will get it set ...

Recently diagnosed with ALS

4thson
  • By 4thson · New reply July 29, 2010
  • Discussion in ALS and the military · 15 replies
  • Hello, I've been diagnosed with ALS and Im living in Germany. I want to apply for VA benefits, but I don't know where to begin. Also Is there an ALSA in Germany ...

How long does he have?

hopeful_relative
  • By hopeful_relative · New reply July 15, 2010
  • Discussion in Children and families · 16 replies
  • I wish someone could give me an idea as to how long he has? I know I should be thankful for every day that I have him in my life, but I still wish I knew ...

My Mom

lsumsgirl
  • By lsumsgirl · New reply July 6, 2010
  • Journal · 5 replies
  • My mom Melba Martin was diagnosed with ALS in September 2009. It has progressed very rapidly. She is now in a Nursing Home because both her arms are paralyzed and she has to have 24 hour care. I knew ...

Father who had ALS

Danielle987
  • By Danielle987 · New reply July 6, 2010
  • Journal · 5 replies
  • Hi Im 22 and my father died February 2008 from ALS. He started having symptons in 1994 and was diagnosed in 1995. He lived with the disease for almost 13 years. He died when he was 41.The doctors thought ...

Biting Tongue

joe
  • By joe · New reply July 4, 2010
  • Journal · 1 reply
  • I not only bite my tongue but I also bite my lower lip and the inside of my cheeks. I’ve had ALS since 1995 but wasn’t confirmed until 2001 and the most annoying part is biting my lower lip; the lip ...

my wife wants divroce

max-3
  • By max-3 · New reply July 4, 2010
  • Discussion in Familial ALS · 1 reply
  • I have ALS (although it's a mild strain of it) and was diagnosed in 2001. I can still do some things around the house like mow lawn with the lawn tractor. Although I can barely walk, I can ride my scooter ...

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The ALS Advocacy Support Community connects patients, families, friends and caregivers for support and inspiration. The ALS Advocacy Support Community is sponsored by The ALS Association in partnership with Inspire.