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Diaphragm Pacing System

NannetteRC
  • By NannetteRC · New reply 8:51 am
  • Discussion in Children and families · 28 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 ...

Curious About The benifits Of Coconut Oil

Duvie
  • By Duvie · New reply 7:41 am
  • Journal · 310 replies
  • This past week I've been hearing about coconut nut oil having a lot of great benefits on the body. Can anyone say for sure that coconut oil actually is working for some patients? Thanks for any responses ...

Boost VHC Drink - 530 Calories

Duvie
  • By Duvie · New reply 12:21 am
  • Journal · 68 replies
  • Thanks to a lovely lady battling ALS, I have found out about this new Boost high- calorie drink to pass on to those struggling to maintain or to gain weight. Check it out online. Take special notice to ...

Fast Onset of ALS..Our Broken Dreams

Giz
  • By Giz · New reply April 18, 2014
  • Discussion in Children and families · 108 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 ...

Talent Show for ALS, North Carolina

ALH2013
  • By ALH2013 · Posted April 13, 2014
  • Discussion in ALS and the military · 0 replies
  • Being a veteran during the Vietnam and Cold War eras, I am a veteran and I lost one of my supervisors in the Air Force a few months ago. I will bring some more details as they become available but have ...

The Rife Frequency Machine

Giz
  • By Giz · New reply April 12, 2014
  • Discussion in Children and families · 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 ...

high Carb high caloric diet

arcticseawitch
  • By arcticseawitch · New reply April 10, 2014
  • Journal · 8 replies
  • I was to my first ALS clinic and was told not to lose weight Try and eat high carb high caloric foods. The young resident said ice cream gravy butter etc. Well I am very good at eating healthy so I will ...

help

joeldude1
  • By joeldude1 · New reply April 9, 2014
  • Discussion in Familial ALS · 5 replies
  • my sister is 4 years into he als she is vented/trach's/gtubed and home. she is 44 years old now she has familial als, her father and uncle died of this disease as well. i may be next, do not know. i am ...

help

joeldude1
  • By joeldude1 · New reply April 9, 2014
  • Journal · 3 replies
  • My sister is 4 years into her als, she is now trach'd/vented/has a gtube, she is totally bedridden and can only blink now. she is 44 years old. she is at home and my mother is her primary care taker (she ...

A VISION OF LIFES BEST MOMENTS

Mic4life
  • By Mic4life · Posted April 8, 2014
  • Journal · 0 replies
  • VOYAGE OF A LEAF By Gary Jordens Today I sit and ponder Far beneath a wind tossed elm, And watch a leaf take wander, When the wind would overwhelm. And carry far so far astray As if it were a voyager ...

Tobii Eye Gaze second hand set up

Familydad
  • By Familydad · New reply April 8, 2014
  • Discussion in Children and families · 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

Mic4life
  • By Mic4life · Posted April 6, 2014
  • Discussion in Children and families · 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 ...

Diaphragm Pacing

sloanryan
  • By sloanryan · New reply March 30, 2014
  • Journal · 2 replies
  • I had a Pacer implanted about a month ago. Since programming a couple of weeks ago. I have been building my endurance . I was wondering how others are doing with their Pacer ...

20 years and onward!

SShack
  • By SShack · New reply March 28, 2014
  • Discussion in National ALS Advocacy Day · 6 replies
  • I just recorded my 20th year since I was told I had ALS and only 2 years to live! I was the first person in cyberspace to publish an ALS/MND website but the address had to be changed twice. Now the site ...

Mattress 911! Suggestions please?

Angeliza
  • By Angeliza · New reply March 26, 2014
  • Discussion in Children and families · 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 ...

Tube feeding

Pookins
  • By Pookins · New reply March 26, 2014
  • Discussion in National ALS Advocacy Day · 3 replies
  • Hi . I have tried many different brands of feeds suitable for PEG feeding but we found that my husband tolerates compleat better than any other feed. He is nauseous and bloated after all the other feeds....,his ...

Leg or Foot Massage Devices???

Duvie
  • By Duvie · New reply March 23, 2014
  • Journal · 57 replies
  • Wondering if anyone uses a massage device and how well it works. Jo and I sometimes suffer with our legs wanting to cramp up. Jo even has problems with her left arm occasionally. If anyone can give us ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • Journal · 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • Journal · 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

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The ALS Association Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by The ALS Association, an Inspire trusted partner.