Children and families

Those in the ALS community know first hand that ALS is a family disease that impacts the person fighting the disease as well as their loved ones and friends. Join this discussion group to share your family's experiences and find support from others whose families have been impacted by this disease.


Fast Onset of ALS..Our Broken Dreams

  • By Giz · New reply yesterday at 2:09 pm
  • 106 replies
  • Hello everyone.. My partner just got diagnosed with ALS. He just turned 50 in December. I am 45 years old. His symptoms started in march after a horrible kidney stone incident. Slurred speech was the ...

The Rife Frequency Machine

  • By Giz · New reply April 12, 2014
  • 7 replies
  • Hello everyone!! Our friend Denny has ALS.. very fast onset bulbar onset. Our family just purchased this machine.. MOPA..Rife frequency machine. After using it for a few days, Denny has gotten some muscle ...

Tobii Eye Gaze second hand set up

  • By Familydad · New reply April 8, 2014
  • 7 replies
  • My wife, Tracey, has ALS is 53 years old. She has lost her usage of her legs, her left arm and voice with her right hand/arm weakening. She is reaching a point where she needs eye gaze software. A friend ...

A place in time

  • By Mic4life · Posted April 6, 2014
  • 0 replies
  • Hello to all. Just signed on and would like to acknowledge that I am happy to find a place away from the white walls of the Dr. Offices and hopefully meet alike minded individuals that share a common ...

Mattress 911! Suggestions please?

  • By Angeliza · New reply March 26, 2014
  • 1 reply
  • Roho is out because it creates a 'valley' below the bottom. Quart Diamond 8 Plus is out now too. The alternating pressure worked well for 6 months, but my Dad has lost all his muscle now, so the small ...

Independent living or Assisted for my brother

  • By Ms-Mee · New reply March 17, 2014
  • 2 replies
  • I am trying to find housing for my 51 year old brother who was diagnosed almost 2 yrs ago w/ALS. He is living in a 3rd floor apartment w/no elevator and the lease is up in June 2014. He would like to ...

Diaphragm Pacing System

  • By NannetteRC · New reply March 16, 2014
  • 25 replies
  • I had the Diaphragm Pacing System placed in November. I am having a problem when I get overly tired. The left side of my diaphragm seems to get over stimulated and I have to turn the DPS off until it ...

When the Power of Attorney won't make a decision !

  • By WayneLampe · New reply February 28, 2014
  • 3 replies
  • Subject : What can family do When the Power of Attorney won't make a decision ! Hello- I heard of this current situation and trying to get information to forward to this family. The Situation - A mother ...

Speaking devices

  • By SBeck · New reply February 26, 2014
  • 11 replies
  • Hello All, I have a question for anyone who can help. My mother is PALS, I am taking care of her in our home. She is paralyzed from the waist down but still has use of her arms and hands. An amazing ...

Relief from pain, fighting bedsores

  • By SBeck · New reply February 19, 2014
  • 6 replies
  • My mother, 76, is bravely struggling with ALS. I am caring for her in our home. She has developed a small red area which I have been told could develop into a painful bedsore. (She is bed-bound) I am ...

MIlkshakes and choking

  • By merula · New reply February 18, 2014
  • 7 replies
  • Has anyone else had serious swallowing issues after drinking one of these? Has happened twice ...

anyone know a good nutrition plan for als patients?

  • By loribell · New reply February 8, 2014
  • 4 replies
  • I am interested to see if anyone has any nutritional meal plans that they are happy with ...

Pressure points

  • By Sacramento · New reply February 7, 2014
  • 7 replies
  • I'm a side sleeper with only moderate upper body strength. Impossible to turn myself over or make meaningful adjustments. I added an alternating pressure pad to my hospital bed; a tremendous help. But ...

anyone know a good nutrition plan for als patients?

  • By loribell · Posted February 1, 2014
  • 0 replies
  • I am interested to see if anyone has any nutritional meal plans that they are happy with ...

Fear & Isolation

  • By B1950 · New reply January 19, 2014
  • 8 replies
  • My ALS symptoms are progressing rapidly. Neuro believes an "official" diagnosis will come at the end of the month. All of this has emerged since Thanksgiving. I'm stunned and terrified, but my family ...

Deanna's Protocol

  • By JCase · New reply January 8, 2014
  • 272 replies
  • My Dad was recently diagnosed with ALS. It is sporadic and not familial and started with twitching and weakness in the legs. In July of this year, he started falling, in August he could only walk about ...

Linkage between depression and ALS

  • By CACATOME · New reply December 29, 2013
  • 14 replies
  • is there a linkage or correlation between depression and ALS--has this been researched or evaluated--can chronic depression account for the nerve damage associated with ALS ...

Looking for pain advice

  • By tpensacola · New reply December 28, 2013
  • 2 replies
  • I been staying with my sister who was recently diagnosed with ALS. She can no longer walk, has choking with most liquids, and has very little sound with her speech. Even with all of that the thing that ...

Low Dose Naltrexone - Anyone have experience with trying this?

  • By Angeliza · New reply December 23, 2013
  • 2 replies
  • It's been suggested by a Naturopathic Doctor that we look into Low Dose Naltrexone to treat my Dad's ALS, and I'd like to know if anyone else has experience with this drug? Apparently we can have it made ...

Diaphragm Pacing System

  • By NannetteRC · New reply November 25, 2013
  • 34 replies
  • Today I went to clinic and asked about the Diaphragm Pacing System. I had asked about it earlier and it was not recommended. When I asked today the attitude was enthusiastic. I am having the sniff test ...

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