April 6, 2017

Amyotrophic Lateral Sclerosis (ALS)


Here’s a free collection of resources about Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. Blogs, support groups, first-hand experiences and advice from people who have ALS, etc.

Jump to:


ALS Blogs

Here’s a collection of ALS blogs. These blogs are written by people with ALS or about ALS.

Yitzi Hurwitz yitzihurwitz.blogspot.com 2017
Carol Jean Skinner livelovelaughwithcarol.com 2017
Richard McBride richardislivingwithals.blogspot.com 2017
Lee Millard onein400.com 2017
Trimble Strong trimblestrong.org 2017
ALS Dan Toch alsdantoch.com 2017
ALS Advocacy als-advocacy.blogspot.com 2017
Tracy Boettcher als-whaticantellyou.blogspot.com 2017
Journey On With Royce journeyonwithroyce.blogspot.com 2017
Dagmar Munn alsandwellness.blogspot.com 2017
ALS Assistive Technology alsassistivetechnology.blogspot.com 2017
Healing ALS healingals.org 2017
Eric Valor ericvalor.org 2017
ALS Forums Blog alsforums.com/blog 2017
Beyond ALS Blog beyondals.org/blog 2017
ALS Don alsdon.blogspot.com 2017
Team Drea teamdrea.com 2017
Ray’s Little Ride rayslittleride.com 2017
Stephen Finger stephenfinger.wordpress.com 2016
ALS With Courage alswithcourage.com 2016
Jim’s Journey With ALS jimsjourneywithals.com 2016
Have Some Decorum havesomedecorum.blogspot.com 2016
Sue Cook alsyousuck.blogspot.com 2016
Hajime’s ALS Life hajimesalslife.blogspot.com 2016
Annette Curry annettec954.blogspot.com 2016
Jim Knudson dailylifewithals.blogspot.com 2016
Patty’s OK So Far pattysoksofar.com 2016
Pam Hillery eachdayisjoyful.blogspot.com 2016
April’s ALS Blog aprilals.com 2015
Breakthrough ALS breakthroughals.org 2015
Kevin Lives With ALS kevinliveswithals.blogspot.com 2014
Jack Schuldenfrei jackschuldenfrei.blogspot.com 2014
ALS Chronicle alschronicle.blogspot.com 2014
Kiss My ALS kissmyals.org/blog 2014
Heidi Swiacki heidigoodtimes.blogspot.com 2013
My ALS Remission Story myalsremissionstory.blogspot.com 2013
Tom Swift livingwithalsbytomswift.blogspot.com 2013
Robin Mower robinsjourneywithals.blogspot.com 2013
Caroline Rober carolinerober.com 2013
ALS or Lou Gehrig’s Disease alsorlou.blogspot.com 2012
My Life As A Warrior mylifeasawarrior.blogspot.com 2010
Jenny’s Journey jenjensfamily.blogspot.com 2009
Brain Hell brainhell.blogspot.com 2008

ALS Support Groups

ALS Support Groups On Facebook

  1. ALS We are in it together group (4,108 members)
  2. ALS ICE BUCKET CHALLENGE Group (3,888 members)
  3. Lou Gehrig’s Disease (ALS) Facebook Group (3,538 members)
  4. KEEP FIGHTING AGAINST ALS! (LOU GHERIG’S DISEASE) Group (3,522 members)
  5. ALS – Patient and caregiver tips for every day living group (2,413 members)
  6. ALS Ice Bucket Challenge Group (2,336 members)
  7. Our Lives With ALS Group (2,042 members)
  8. ALS ice Bucket Challenges for Mark Hauck Group (1,990 members)
  9. Familial (hereditary, genetic) ALS / MND Support Group (1,807 members)
  10. ALS ICE BUCKET CHALLENGE Group (1,512 members)
  11. ALS Naturally Group (1,290 members)
  12. ALS Ice Bucket Challenge Group (1,040 members)
  13. Joe College Sr. hates ALS (Lou Gehrigs disease) & MND (Motor Neuron Disease) Group (975 members)
  14. Living with MND, ALS & PLS Group (913 members)
  15. Research on Motor Neuron Disorders: PLS, HSP/SP, and ALS Group (876 members)
  16. ALS CAREGIVERS Group (822 members)
  17. ALS – Amyotrophic Lateral Sclerosis (Lou Gherigs Disease) Group (795 members)
  18. Lou Gehrigs Disease aka ALS Group (685 members)
  19. Walk to Defeat ALS (Lou Gehrig’s Disease) Group (668 members)
  20. Living with ALS ~ For PALS ONLY Group (581 members)
  21. Whole body healing for ALS Group (567 members)
  22. ALS (Lou Gehrigs) awareness ! Group (541 members)
  23. ALS Natural Holistic Healing Group (464 members)
  24. Sarcoidosis, CFS, Lyme, MS, Lupus, ALS, Inflammatory Diseases and Bacteria Group (440 members)
  25. ALS Forum for Women (Lou Gehrig’s disease) (420 members)
  26. Motor Neuron Disease Support Group (ALS, PLS, HSP) (354 members)
  27. Milton the Mighty Warrior: Fight ALS Group (340 members)
  28. ALS Ice Bucket Challenges Group (335 members)
  29. Mitchell ALS Fighting Team (270 members)
  30. Will’s Warriors – ALS Fight For A Cure Group (269 members)
  31. The Brighter Side of ALS (People w/ALS ONLY) Group (252 members)
  32. ALS support group for Deaf people (Amyotrophic lateral sclerosis) Group (247 members)
  33. ALS Ice Bucket Challenge Group (224 members)
  34. Walk to Defeat ALS Team Bernette (218 members)
  35. Team ALS: Running 4 A Cure Group (206 members)
  36. ALS Patients, Family, Friends and Caregivers Group (160 members)
  37. ALS: Caregiving Spouses support group (149 members)
  38. Pills for pALS Group (132 members)
  39. Lou Gehrig’s Disease Support Group (129 members)
  40. ALS Awareness/Support Group (114 members)
  41. The ALS Ice Bucket Challenge! Group (114 members)
  42. ALS SUPPORT C.G. Group (102 members)
  43. ALS AWARENESS Group (97 members)
  44. ALS families with children Group (92 members)
  45. ALS Awareness Group (89 members)
  46. ALS Awareness Group (88 members)
  47. ALS (Lou Gehrig’s Disease) Awareness Group (82 members)
  48. ALS (Lou Gehrig’s disease) Awareness Group (81 members)
  49. Praying for a Cure for ALS Group (79 members)
  50. ALS (Lou Gehrig’s Disease) Support Group – Hawaii (70 members)
  51. ALS- Lou Gehrig’s Disease: Time To Find A Cure! Group (65 members)
  52. ALS – FIND A CURE! Group (63 members)
  53. PALS And CALS Of ALS Group (61 members)
  54. ALS  Support Group ~ Religion Free Group (41 members)
  55. ALS Autoimmune Chronic Pain Support Group (34 members)
  56. Advocates for ALS (Lou Gehrig’s disease) Group (19 members)

Google Plus ALS Support Communities

  1. Ice Bucket Challenge Videos Community (200 members)
  2. Ice Bucket Challenge Club Community (90 members)
  3. Amyotrophic Lateral Sclerosis Awareness Community (67 members)
  4. ALS and how its effected our family community (39 members)
  5. ALS Community (16 members)

Other ALS Support Groups And Forums

  1. ALS/MND Support Group Forums (30,628 members, 378,177 posts)
  2. ALS Therapy Development Institute Forum (20,660 members, 124,754 posts)
  3. Motor Neurone Disease Association Forum (2,426 members, 64,717 members)
  4. MedHelp ALS Community (1,077 questions)
  5. ALS Subreddit (443 readers)
  6. DailyStrength Amyotrophic Lateral Sclerosis (ALS) Support Group (36 members, 239 posts)
  7. HealthBoards.com Amyotrophic Lateral Sclerosis (ALS) Message Board
  8. eHealthForum.com’s ALS, Lou Gehrig’s Disease Forum
  9. Stem Cell Pioneers ALS Forum

Browse In-Person Support Groups And Events In The United States

*Browse local chapters of the ALS Association.

*Browse Muscular Dystrophy Association events near you.

*Attend a Joan Dancy & PALS meeting in New Jersey.


ALS Survey

We are surveying  people about their experiences with ALS. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name of person with ALS, Age at Onset of ALS)


**Click here to share your experience with Amyotrophic Lateral Sclerosis (ALS)**


ALS Types

What type of ALS do you (or your loved one) have? (Classical, PLS, PBP, PMA, Familial)

  • PLS. (Jennifer J., onset at age 20)
  • Classic Sporadic ALS. (Audrey W., onset at age 21)
  • PLS. (Jennifer J., onset at age 21)
  • Classical. (Kasper, 25 years old)
  • Limb Onset. (Kari R., onset at age 26)
  • Classical. (Kari R., onset at age 28)
  • PLS. (Lindsay, onset at age 29)
  • Classic. (Ryan, onset at age 30)
  • Familial. (Stephanie, onset at age 34)
  • Familial. (Melissa, 35 years old)
  • Bulbar. (John, 37 years old)
  • Familial. (Jay, 38 years old)
  • Classical. (Randy, 38 years old)
  • PLS. (Jodi, onset at age 39)
  • Classical. (Tushar S., onset at age 40)
  • Familial. (Brett, 43 years old)
  • Classical. (Lisa, onset at age 43)
  • Not sure what those stand for… were what took us to the Dr. Classic? Not familial for sure. (Steven, onset at age 44)
  • Classical. (Lisa, 45 years old)
  • PLS. (Thomas, onset at age 45)
  • Classical. (Scott, onset at age 46)
  • Sporadic. (Angela, 47 years old)
  • PMA. (Jeanine, 47 years old)
  • Classical. (Vincent, onset at age 47)
  • Classical. (James, onset at age 51)
  • Umn dominant ALS. (Olivia, 53 years old)
  • Familial. (Lauri and Gene, 53 and 55 years old)
  • Familial. (Joseph, 54 years old)Bulbar. (Lesley, 56 years old)
  • Familial. (Lyle, onset at age 57)
  • Sporadic. (Marta, onset at age 57)
  • Classical, I think. (Jim, onset at age 58)
  • Bulbar ALS. (Paulino, 58 years old)
  • Bulbar. (Anna, 60 years old)
  • Familial. (Jim, onset at age 60)
  • PBP. (Steven, onset at age 60)
  • Not sure. (Malek, onset at age 61)
  • Classical. (John, onset at age 63)
  • Sporadic. (John, onset at age 64)
  • PMA. (Ron, onset at age 65)
  • PBP. (Katherine, onset at age 65)
  • Classical. (Jane, 66 years old)
  • Classical. (Barbara, onset at age 67)
  • PLS. (Elmer, onset at age 68)
  • Classic. (Mary, onset at age 68)
  • Classical, I think. (Lyle, onset at age 70)
  • Familial. (Katherine, 72 years old)
  • Classical. (Maria, onset at age 72)
  • Classical. (Anonymous, onset at age 73)
  • Fals c9. (Kay, 73 years old)
  • Im not sure… something with neuron of movement. (George, onset at age 76)
  • Classical. (Irma, onset at age 77)
  • Classical. (George, onset at age 78)

ALS Symptoms

Symptoms experienced:

  • Speaking difficulty, walking difficulty. (Jennifer J., onset at age 20)
  • Trouble with balance and coordination, muscle fasciculations, Difficulty using hands/hands won’t completely straighten anymore, Muscle atrophy in hands, shoulders and bilateral lower legs. (Audrey W., onset at age 21)
  • Pain and weakness in legs and speech difficulties. (Jennifer J., onset at age 21)
  • Not able to stand and walk anymore… Not much strength. (Kasper, 25 years old)
  • Facilities, brisk reflexes, finger curling. (Kari R., onset at age 26)
  • Weak hands, dystrophy in hands/shoulders, weakness in general, fatigue, unsteady gait at times. (Kari R., onset at age 28)
  • Bilateral foot drop, weakness. (Lindsay, onset at age 29)
  • Weak arms, legs, hands, speech, no balance, and trouble swallowing. (Ryan, onset at age 30)
  • Weakness and atrophy in the right leg. (Stephanie, onset at age 34)
  • Hand and arm weakness. (Melissa, 35 years old)
  • Loss of muscle in calf. (Jay, 38 years old)
  • Atrophy in hands and upper back, loss of strength upper body, slight slurring of speech. (Randy, 38 years old)
  • Weakness, spasticity, balance problems, falls, incontinence. (Jodi, onset at age 39)
  • Extremely slow walking, legs tighten up, I walk with a walker. (Kathy M., onset at age 40)
  • Fasciculations, muscle wastage initiating from the limbs, then progressing to the entire body. (Tushar S., onset at age 40)
  • Facial nerve twitching, inability to flare nostrils, inability to whistle. (Brett, 43 years old)
  • Limb weakness. (Lisa, onset at age 43)
  • Weak left side, slurred speech were first indicators. (Steven, onset at age 44)
  • Limb weakness. (Lisa, 45 years old)
  • Foot drop, muscle loss. (Thomas, onset at age 45)
  • Twitches in shoulder and arm. (Scott, onset at age 46)
  • Shaking, loss of strength in hands and legs, inability to control bodily movements. (Angela,47 years old)
  • Neck weakness, shaking of upper extremities and shortness of breath. (Jeanine, 47 years old)
  • Foot drop=bilateral, respiratory<50%, early bulbar symptoms. (Vincent, onset at age 47)
  • Bedridden, loss of motor function. (James, onset at age 51)
  • Weakness. (Olivia, 53 years old)
  • Limb onset (weakness). (Lauri and Gene, 53 and 55 years old)
  • Partially paralyzed diaphragm causing respiratory distress, overall coordination loss, falling, drop foot, loss of appetite, weakness in arms and legs, muscle pain, and atrophy. (Joseph, 54 years old)
  • Slurring, jaw clunking, yawning. (Lesley, 56 years old)
  • Slurred speech. (Lyle, onset at age 57)
  • Fasciculations, weakness, muscle atrophy, pain. (Marta, onset at age 57)
  • No bulbar, losing use of all limbs. (Jim, onset at age 58)
  • Weakness in hands- muscle loss-weight loss- muscle quivers-falling-loss voice- couldn’t breathe-then paralyses sit in upper body first. (Paulino, 58 years old)
  • Cannot speak, difficulty swallowing. Unable to walk. (George, 59 years old)
  • Speech problems. Difficulty swallowing, difficulty chewing. (Anna, 60 years old)
  • Slurred speech, trouble swallowing, salivating, left arm muscle loss with no grip, and now feeding tube. (Jim, onset age 60)
  • Started walking with head and shoulders slumped forward and down, slurred speech, difficulty speaking and trouble picking up feet and walked with a shuffle, started losing his balance and falling. (Steven, onset at age 60)
  • Loss of muscles movement for both legs and left hand and voice lost. (Malek, onset at age 61)
  • Slurred speech, weakness in left hand. (John, onset at age 63)
  • Weakened muscles; first in hands, then limbs; fesiculations (muscle twitching.) Low immune system. (John, onset at age 64)
  • Leg pain, could not stand on tip toes. (Ron, onset at age 65)
  • Loss of speech, swallowing. Weak extremities. (Katherine, onset at age 65)
  • Left hand weakness. (Jane, 66 years old)
  • Loss of speech, swallowing difficulties, major upper body weakness, some lower body weakness. (Richard, 66 years old)
  • LOSS OF VOICE, SLURRED SPEECH, DYSPHAGIA, RIGHT ARM/HAND WEAKNESS. (Barbara, onset at age 67)
  • Slurred speech, partial paralysis in legs, respiratory. (Elmer, onset at age 68)
  • Weakness.. was misdiagnosed for three years. Stiffness. Falling. (Mary, onset at age 68)
  • Muscle wasting, hoarseness, weakness, tremors. (Lyle, onset at age 70)
  • Weakness, twitching. (Katherine, 72 years old)
  • Muscle weakness, falling. (Maria, onset at age 72)
  • Muscle atrophy in leg, slurred speech, dropped foot, neck cramps. (Anonymous, onset at age 73)
  • Noticeable onset is slurred speech and difficulty swallowing, and works its way down as opposed to the majority of random ALS, which starts in the limbs and moves up. (Kay, 73 years old)
  • Hands stopped moving slowly. First finger tips, then slowly up to the whole arm. It has been one year and progress somehow is on pause. (George, onset at age 76)
  • Tiredness initially, loss of strength in legs, a fall that fractured an ankle and put my mother in a wheelchair, from which she never got out of until her death two years later. (Irma, onset at age 77)
  • Right arm weakness, loss of right arm, left arm loss, left leg, now right leg. (George, onset at age 78)
  • Quadriplegic, almost no voice, some stiffness, shakes and drooling. (Italo)

ALS Causes

Is there anything you believe contributed to your (or your loved one’s) condition? (environmental factors, experiences, genetics, etc.)

  • Mold results in sinusitis, arthritis. (Jennifer J., onset at age 20)
  • Repeated head injuries/concussion, due to abusive father and car accidents. (Audrey W., onset at age 21)
  • Genetic. (Jennifer J., onset at age 21)
  • Pesticides, living near Fernald Nuclear Plant- all in the water table and MSG. (Kari R., onset at age 26)
  • Lived near Fernald Nuclear Plant, Lived in farming area- dust crops at times, etc. (Kari R., onset at age 28)
  • Antidepressants, toxins in the environment and food. (Lindsay, onset at age 29)
  • Not sure. (Ryan, onset at age 30)
  • Genetics based, stress activated. (Stephanie, onset at age 34)
  • Genetics. Pregnant when symptoms started- maybe pregnancy triggered it. (Melissa, 35 years old)
  • Genetics. (Jay, 38 years old)
  • Environmental, medication, hormones, stress, low immunity, cortisone injections, head trauma. (Jodi, onset at age 39)
  • Never really figured it out. (Tushar S., onset at age 40)
  • Genetics. (Brett, 43 years old)
  • No. (Lisa, onset at age 43)
  • Chemicals he worked with as a grounds keeper. (Steven, onset at age 44)
  • Environmental. (Thomas, onset at age 45)
  • Exposure to many chemicals and mold. (Scott, onset at age 46)
  • Environmental factor-Sprayed poison in and outside of house without proper ventilation. (Jeanine, 47 years old)
  • Chemical exposure at work. (Vincent, onset at age 47)
  • Car crash in 1961, hit steel dashboard which resulted in frontal lobe damage and spinal damage. Had no treatment after injury. (James, onset at age 51)
  • Genetics. (Olivia, 53 years old)
  • C9ORF72 mutation. (Lauri and Gene, 53 and 55 years old)
  • Genetics. Previous family members were diagnosed, and passed away due to ALS. (Joseph, 54 years old)
  • High Mercury and lead and dental freezing mishap. (Lesley, 56 years old)
  • I do not know. (Lyle, onset at age 57)
  • I honestly beleive it was due to psychotic medication and chemicals. (Paulino, 58 years old)
  • Had serious head injury at age 6. (George, 59 years old)
  • Trauma and stress. (Anna, 60 years old)
  • Genetics. (Jim, onset at age 60)
  • Several close family members..father…uncles were diagnosed with Parkinson’s disease. He was under a lot of stress with his work, and his mom had died in a tragic fire a year before he was diagnosed. (Steven, onset at age 60)
  • Stress factor/lack of anger management. (Malek, onset at age 61)
  • Not clear, but we found out his college roommate at FSU died of ALS right around the time my father was dx in 2011. (John, onset at age 63)
  • Possibilities were working with leaking chemicals in environment. High dose of statin drugs lowered cholesterol to unhealthy levels. Head and neck injury as a young boy (bucked from a horse. Head hit a tree.) Painful at the time! (John, onset at age 64)
  • Concussions. (Ron, onset at age 65)
  • Dental infection, amalgam fillings, poor diet. (Katherine, onset at age 65)
  • Service connected ( Vietnam war). (Richard, 66 years old)
  • Military veteran. (Elmer, onset at age 68)
  • We aren’t sure. (Mary, onset at age 68)
  • Agent Orange. (Lyle, onset at age 70)
  • Environmental. High traces of lead were found in her blood, as well as mercury. (Maria, onset at age 72)
  • Had Lyme Disease, under a great deal of stress. (Anonymous, onset at age 73)
  • That C9 gene, but perhaps further effected by brain trauma from sports or auto crash, falls. Some thought on smoking, as well as heavy metals and other air/environment pollution, including algae spores. (Kay, 73 years old)
  • I have no idea, apart from the fact that my father was very active in sports, but also couldn’t live without alcohol. Not to the degree of being a true alcoholic, but regular sittings at the pub was a must. (George, onset at age 76)
  • No, this is the mystery I want an answer to. (Irma, onset at age 77)
  • I believe statin drugs have played some roll in this. He is also a veteran. (George, onset at age 78)
  • After a trauma he started to develop this disease ten years later. (Italo)

ALS Interesting Facts

Interesting things you’ve learned about ALS:

  • You can improve your symptoms. (Jennifer J., onset at age 20)
  • After my diagnosis, I ate whatever and drank a 1/2 of a big bottle of wine a week. I woke one day and realized I wasn’t ready to die yet, so I changed my diet. I’m now completely gluten-free, non-gmo and organic (as much as possible). My symptoms have started slowing down so much, diet really has a lot to do with it. (Audrey W., onset at age 21)
  • I have learned that this disease truly does effect people in different ways. (Jennifer J., onset at age 21)
  • It’s so different in every person. Every day is a mental *uck. We feel so lucky to have a slow killer… is it lucky? (Kari R., onset at age 28)
  • There is a lot of physical pain associated with ALS, unlike the descriptions of ALS that they tell you. (Lindsay, onset at age 29)
  • Different people respond to different treatments. (Ryan, onset at age 30)
  • Family relatives with ALS have had very different progressions. (Stephanie, onset at age 34)
  • Effects and progresses completely different for everyone. (Melissa, 35 years old)
  • It is different in all patients. We have had 17 people in the family pass away each affected differently. (Jay, 38 years old)
  • How it falls on a spectrum much like autism. (Randy, 38 years old)
  • It can to happen to anyone and at anytime. (Tushar S., onset at age 40)
  • Death sentence. (Lisa, onset at age 43)
  • It strikes HEALTHY, ATHLETIC, VITAL people who are in their prime. (Steven, onset at age 44)
  • Not many people know what it really is. (Thomas, onset at age 45)
  • I learn something every day. (Scott, onset at age 46)
  • How ALS affects people differently. (Jeanine, 47 years old)
  • It isn’t always fast. It can start anywhere. But it always ends with respiratory. (Vincent, onset at age 47)
  • ALS can affect anyone. (James, onset at age 51)
  • Very interesting research being done to understand it and find ways to stop it. (Lauri and Gene, 53 and 55 years old)
  • ALS affects your body, but not your intelligence. There are some cases of ALS reversals. Military service increases your chances of contracting ALS. (Joseph, 54 years old)
  • You are on your own as far as wading through research to find anything that might help slow progression. Doctors do not want to try alternative or even common treatments. (Lesley, 56 years old)
  • Most of your body is muscle. (Lyle, onset at age 57)
  • Very few people know it. They take us for mentally sick. (Anna, 60 years old)
  • There is no current test for it. It effects people differently. It progresses in stages. Sometimes it seems to be at a standstill and almost seems like it has stopped its progression. But then it comes back on with a vengeance, and something else gets taken from the patient. (Steven, onset at age 60)
  • Not only the muscle degenerates, the mindset and spirit are highly impacted because it is harder every day to keep hope for a cure. (Malek, onset at age 61)
  • It affects each person differently. (John, onset at age 63)
  • The short duration or the long duration, really no usual. (Ron, onset at age 65)
  • Not PBP is fast. (Katherine, onset at age 65)
  • THAT NOTHING HELPS IN SPITE OF ALL THE THEORIES. (Barbara, onset at age 67)
  • Nuedexta taken for emotional lability, also improved swallowing. I eat regular food by mouth with rare choking incidences. (Elmer, onset at age 68)
  • Different treatments. (Mary, onset at age 68)
  • Symptoms are largely different for each person. (Katherine, 72 years old)
  • How it affects everyone differently. (Maria, onset at age 72)
  • My dad got it at an older age. Early 70’s. he was extremely healthy up until then. Something I’ve noticed is it seems that it strikes people who are active and outdoorsy types. Also, many have had Lyme disease. (Anonymous, onset at age 73)
  • It really does have a wide variety of manifestations, which is part of what leads me to previous answer. My aunt died at 52, my uncle at 64 my mom at 75, my other aunt with FTD in mid 60s and a cousin in his 40s. (Kay, 73 years old)
  • All I learn is sad, especially knowing little research goes into illnesses like this one because they weren’t profitable. This kills me…thank God for the Ice Bucket Challenge, nonetheless it is sad to think so many have died for lack of profit in seeking a cure. (Irma, onset at age 77)
  • I don’t believe anything about ALS is interesting. It is awful. (George, onset at age 78)
  • It’s like trying to destroy a virus that infected your computer and you don’t know what fix to use. (Italo)

ALS Pain Relief

Experience with pain and pain relief:

  • Opioid medication. (Jennifer J., onset at age 20)
  • Pain comes and goes, weather changes seriously affect me. The rain, or it getting cold makes my muscles hurt so bad. (Audrey W., onset at age 21)
  • Ugh! I’ve been on all the high doses of opiates down to injections. Nothing really helps! (Jennifer J., onset at age 21)
  • Nothing so far. (Kari R., onset at age 26)
  • I had a lot of stiffness and soreness in the beginning and coconut oil and CBD have helped a lot with that and with range of motion. (Lindsay, onset at age 29)
  • I have little pain, I’m mainly stiff. (Ryan, onset at age 30)
  • Minimal pain, so no treatments needed. (Stephanie, onset at age 34)
  • Trouble sleeping due to pain (cramps and muscle fatigue), and also twitching! Muscle relaxers help, and sometimes Xanax or Percocet is taken & helps. (Melissa, 35 years old)
  • Mild pain. (Randy, 38 years old)
  • Medication, stretching, sleeping, bathing, hot/cold, massage. (Jodi, onset at age 39)
  • Emotional pain is all I can recollect. Pain relief was spending some happy moments together. (Tushar S., onset at age 40)
  • As it progresses, intense shoulder pain, would wake from sleep. (Brett, 43 years old)
  • Muscle tightening/Baclofen. (Lisa, onset at age 43)
  • Muscle cramps were bad. Quinine and meds for the cramps. Discomfort from sitting in one spot too long. His neck muscles tightened to one side and it hurt to move his head to care for him (clean his neck and shave and such). (Steven, onset at age 44)
  • Muscle tightening/Baclofen. (Lisa, 45 years old)
  • Not much pain. (Thomas, onset at age 45)
  • Quinine, Aleve and marijuana. (Scott, onset at age 46)
  • Minimal pain, except in my behind from loss of gluteal muscles. Using Tramadol continuously and 222s for breakthrough. As far as psychological pain it’s hard to beat Irish Whisky. (Vincent, onset at age 47)
  • Difficult, find Diclo- it works for muscular pain. (James, onset at age 51)
  • ALS Association and Hospice are invaluable to help with this. Pain was limited in both my family members. Sister had quite a bit of muscle cramping. (Lauri and Gene, 53 and 55 years old)
  • Pain was severe, but was managed with prescription morphine. (Joseph, 54 years old)
  • It’s hard to get rid of the pain. (Lyle, onset at age 57)
  • Cannabis oil helps. (Marta, onset at age 57)
  • Pain in ankles from drop foot. (Jim, onset at age 58)
  • My husband was kept on morphine due to extreme pain. (Paulino, 58 years old)
  • Spasticity in legs. Baclofen gives some relief. (George, 59 years old)
  • My husband complained of feeling cold a lot and pain in legs and fingers despite numbness. Avoid drafts and use extra blankets and layers of clothing. (Steven, onset at age 60)
  • High skin sensitivity. (Malek, onset at age 61)
  • My father luckily has not had much pain throughout his journey. (John, onset at age 63)
  • Yes, pain was treated with Morphine the last weeks of his life. (John, onset at age 64)
  • Leg pain, no relief. (Ron, onset at age 65)
  • At first severe neck pain, gone after 9 months, weakness replaced pain. 2.5 into, hip , knee, wrist, elbow, shoulder pain (tendons & ligaments). OTC pain relievers as needed. (Katherine, onset at age 65)
  • Arm pain, mainly in left arm. (Richard, 66 years old)
  • Horrible leg cramps and stiffness in legs abated by a daily dose of 300 mg of Quinidine Sulphate available by prescription from canadadrugs.com. Unavailable in US. I had bad reactions to every known muscle relaxant. (Elmer, onset at age 68)
  • She has pain with no relief. (Mary, onset at age 68)
  • Hip and leg pain. Gabapentin helped. (Katherine, 72 years old)
  • High degree of pain, antidepressants helped, and taking Deanna Protocol. (Maria, onset at age 72)
  • My Dad didn’t have much pain. (Anonymous, onset at age 73)
  • There’s very little if any pain. It’s more like discomfort from muscle twitches and cramps, but mostly there is anxiety with waning breath, failing strength and inability to communicate. (Kay, 73 years old)
  • His arms don’t hurt him. (George, onset at age 76)
  • Acupuncture is what my mother felt helped her feel a bit better and we believe it saved her voice (she stopped slurring) until the weekend before her death, she was able to express herself. Acupuncture also helped with the rigidness of her fingers. They became more flexible. (Irma, onset at age 77)
  • Thankfully, he does not have any pain that requires more than Tylenol or Ibuprofen. (George, onset at age 78)
  • Medical Cannabis oil helps a lot. (Italo)
  • Gabapentin. (Anonymous)

ALS Difficulties

Difficult aspects of living with ALS:

  • Being understood. (Jennifer J., onset at age 20)
  • Loneliness, and my age. I was diagnosed at 30 years old on March 24, 2016, I’m now 31. My friends don’t know how to handle it, so they don’t. Many have stopped talking to me or it seems like a chore to be around me. (Audrey W. onset at age 21)
  • Finding accessible places to live. Getting past the phone calls. (Jennifer J., onset at age 21)
  • It is not easy to be young with ALS – friends disappear. (Kasper, 25 years old)
  • Mental anguish, anxiety. Having three young children, telling our children. (Kari R., onset at age 28)
  • Communication, getting places, having to depend on help. (Ryan, onset at age 30)
  • Mobility challenged, with fatigue being my worst symptom. (Stephanie, onset at age 34)
  • Trying to take care of my baby. Getting dressed and bathing is challenging. (Melissa, 35 years old)
  • Not knowing what to do. (Randy, 38 years old)
  • Trying different things to find what works. The not knowing. The lack of solid information. The falling. Being dependent on people. Loss of independence. People not understanding. (Jodi, onset at age 39)
  • You are aware of the fact that the muscles are degenerating. (Tushar S., onset at age 40)
  • Reliance on others. (Brett, 43 years old)
  • Children. (Lisa, onset at age 43)
  • Loss of communication is the worst. Loss of movement is difficult as well. (Steven, onset at age 44)
  • Being independent. (Thomas, onset at age 45)
  • Mentally draining. The simple tasks that slip away. (Scott, onset at age 46)
  • Losing mobility and financial burden. (Jeanine, 47 years old)
  • Learning patience, everything takes longer. Accepting that equipment is now part of your day. Learning to pace yourself, fatigue is a huge part of this disease. Worst of all is the knowledge my wife will be left alone. (Vincent, onset at age 47)
  • Loss of speech, movement, difficulty in swallowing, breathing. (James, onset at age 51)
  • Inability to care for self and to speak. (Lauri and Gene, 53 and 55 years old)
  • As his caregiver, it’s my experience that the most difficult aspect was that he had to rely on others to do everything for him, after spending his life doing things for himself, and taking care of others. (Joseph, 54 years old)
  • Breathing issues make you tired all the time. (Lesley, 56 years old)
  • Going out in public. (Lyle, onset at age 57)
  • Dependence on others, pain. (Marta, onset at age 57)
  • Everything. (Jim, onset at age 58)
  • EVERYTHING is difficult from eating-moving-communicating and the list goes on. (Paulino, 58 years old)
  • Complete life change , affects whole family. People who were friends drop away. (George, 59 years old)
  • Hard to make others understand. Even doctors. (Anna, 60 years old)
  • Every bit of it…it hits hard on ALL levels…physically losing yet another ability to do something every week each month…destroys your financial security, because everything you need to provide care…meds…equipment…surgeries like jpeg tube…hiring in-home caregivers are very costly. We lost half of our retirement plus our only source of income when my spouse had to give up his law practice. Emotionally devastating. (Steven, onset at age 60)
  • Being hopeless and the collateral damages on family members. (Malek, onset at age 61)
  • Everything. (John onset at age 63)
  • For him, it was humiliating and humbling; plus he was an insulin dependent diabetic! Exhausting and emotional journey for us and family! Occupational therapy was awesome! Assessing and forms for free equipment enabled him with a wheel chair, stair lift, portable outdoor ramp, and a portable lift indoors covered by Sask. Canada fund raiser…Kinsmen Telemiracle and Home Care, plus free meds…Re: Palliative Care! Family and friend fundraiser equipped John with an electric lift chair and a used lift van. I remain to feel emotional… Pain is still deep at the experience and loss, not to mention the suffering! (John, onset at age 64)
  • All the side effects of the medicine for pain. (Ron, onset at age 65)
  • Being dependent on others for all needs. Not being able to do what your mind wants to do, but your body can’t. (Katherine, onset at age 65)
  • LOSS OF INDEPENDENCE AND DIGNITY. (Barbara, onset at age 67)
  • Lack of independence. Loss of rapid and timely verbal communication. Tobi, etc. are too slow and frustrating. (Elmer, onset at age 68)
  • Losing motor skills. (Mary, onset at age 68)
  • Not having independence. (Lyle, onset at age 70)
  • The most difficult is not being able to communicate. (Maria, onset at age 72)
  • Speech. He basically went from being a super active person to nothing. (Anonymous, onset at age 73)
  • Nutrition is difficult because of the throat collapsing. Communication is hard. And progression is quick, usually healthy to gone in 2-3 years. (Kay, 73 years old)
  • Inability to take care of body hygienic things, a risk of not being able to stand up after a fall, psychic difficulties- sadness, feeling hopeless, no meaning in life, feeling burden for others. (George, onset at age 76)
  • The reality of death staring you and loved ones in the face with little options. Seeing your mother suffer, economic implications, lack of empathy from the medics, insurance dictating possibility of support from hospitals. Not having answers as to why. (Irma, onset at age 77)
  • Losing your physical abilities while maintaining mental clarity is hard. We are now at the point of losing swallowing, speech and breathing. (George, onset at age 78)
  • It’s hard to manage when symptoms get worse. (Italo)

ALS Advice

Encouragement/advice for those recently diagnosed with ALS:

  • Keep your head up, we are all in this together. (Audrey W., onset at age 21)
  • Find a way to keep moving and enjoy life. You now have an opportunity to do things you may have been putting off. LIVE! (Kari R., onset at age 26)
  • Research, and make your own decisions. Live, laugh, love. (Kari R., onset at age 28)
  • Seek natural holistic care and eat right. I feel so much better than I did three years ago and have even gained strength back in my hands. There’s definitely hope. (Lindsay, onset at age 29)
  • Trust in God and stay positive. (Ryan, onset at age 30)
  • It is still possible to enjoy life with ALS. (Stephanie, onset at age 34)
  • Take it all a day at a time. Live in the present.. but also plan for what you can control. (Melissa, 35 years old)stay active, remember this affects the entire family. (John, 37 years old)Live life to the fullest! We try to do everything even with the wheelchair. (Jay, 38 years old)
  • Stay active. Do not stop the activities you do as a routine. (Tushar S., onset at age 40)
  • Live life to the fullest. (Brett, 43 years old)
  • Get things in place before you need them. BORROW a power chair rather than buy one. Live each day to it’s fullest. Make memories with the money – don’t refinish the house or bathroom. Make memories. (We set my husband up in the living room with everything he needed). (Steven, onset at age 44)
  • Keep a good attitude. (Thomas, onset at age 45)
  • Do what you can while you can. Stay positive with what you can still do. (Scott, onset at age 46)
  • Always fight with a positive attitude and sense of humor. (Jeanine, 47 years old)
  • Today is the best day you will have. Don’t waste it feeling sorry for yourself. (Vincent, onset at age 47)
  • Stay the course, never give up. Get help from the ALS Society. Find a good doctor who knows what he is doing. (James, onset at age 51)
  • Accept help from others, look for the delights in life (they’re still there, just perhaps harder to find). (Lauri and Gene, 53 and 55 years old)
  • Never lose hope, or faith! Do your own research, and always question what others might tell you in order to learn the truth. Things are not as black and white as mainstream medicine makes them appear to be when it comes to ALS. (Joseph, 54 years old)
  • Get the best treatment that you can, and get your support. (Lyle, onset at age 57)
  • Diet, be positive, take supplements, keep informed, enjoy life, join online groups. (Marta, onset at age 57)
  • This is difficult to answer ! Make sure your soul is right with God, and enjoy anything you can while you can! Keep the faith, miracles do happen, and a cure is right around the corner ! In rare cases it reverses itself or stops progression. (Paulino, 58 years old)
  • Acceptance. Respect the person for trying to remain as independent as possible. (George, 59 years old)
  • Pray they find a cure. (Anna, 60 years old)
  • I pray you have a good support system (family, friends, etc. ). When it comes time to claim disability, stay after them until you get results, my husband was diagnosed in May, and this past week was finally accepted after a few denials, but won’t begin receiving it until December! May you all stay blessed and think positive. (Jim, onset at age 60)
  • ALS is a b****, but it can’t destroy love for your family and friends, nor their love for you. It can’t take away your memories of all the good times you had in your life. Do as much as you still are able, and be thankful each day you can still do them. Don’t die before you have to. Live and enjoy each remaining day. Try to surround yourself with positive people and things. Laugh as much as you can. Never give up hope. Even though my husband eventually died from ALS, I believe his hope kept him alive, and still enjoying at least part of his life an extra six months or more. If he had given into it early on…he would’ve died much sooner I believe. (Steven, onset at age 60)
  • Take care of yourself. (Malek, onset at age 61)
  • Some will be lucky and the disease will be slow progressing, so it won’t advance very fast. I do not recommend a trache if you are older. You will put your family through much suffering and financial loss. My father cannot communicate at all, he is basically locked in. (John, onset at age 63)
  • A positive attitude is first, then change your diet if you want hang around longer. Find a support group, journal, line up your ducks, decide what you want, contact ALS Reversals, decide which you want to follow, don’t waste time eating foods that are harmful, sugar, alcohol, dairy, white flour, graininess & fruit! (Katherine, onset at age 65)
  • DON’T PUT OFF UNTIL TOMORROW, WHAT YOU COULD ENJOY TODAY. (Barbara, onset at age 67)
  • My primary comfort comes from my faith in Jesus. I am at peace. I have a great and close family. Humor. You have to laugh and not fear death. (Elmer, onset at age 68)
  • Live for today. Get into a group for support. Read, read, read. (Mary, onset at age 68)
  • Gain as much info and support as possible. (Katherine, 72 years old)
  • Focus on family, and enjoying the little things in life. (Maria, onset at age 72)
  • Try to laugh if you can. My Dad used to say that was all he had in the end. (Anonymous, onset at age 73)
  • Investigate all potential remedies, including the likes of aromatherapy and supplementation, to hold on to quality of life as long as possible. Also consider research participation as a matter of being proactive/feeling less of a victim. (Kay, 73 years old)
  • Patience. Remember to have fun no matter what. (George, onset at age 76)
  • I wish I had discovered ALS Naturally on Facebook before my mother’s passing, as well as other literature so we could have tried the so many possible medications, supplements, herbs, etc. We tried many, but had no idea there were so many others out there. (Irma, onset at age 77)
  • Enjoy and embrace each and every day! (George, onset at age 78)
  • Pray a lot, eat a lot, change all food to organic, cook your own food, coconut oil, cannabis oil and B12 injectables have to be in your treatment. Be positive, hope is close for new therapies to get approval. (Italo)
  • Family and friends just to stop by and say “Hi” once a week. (Anonymous)

ALS Diet and Exercise

Experience with diet and exercise:

  • They’re very necessary. (Jennifer J., onset at age 20)
  • Gluten-free, organic, NON-GMO is slowing my symptoms tremendously. I work still, so that is my exercise, and I’m soon to be starting yoga. (Audrey W., onset at age 21)
  • We try to eat preservative free! We make our own breads/jams/jellies, etc. (Kari R., onset at age 26)
  • Stay away from fast food, any preservatives. This is so difficult, but worth it! Running after three kids is our exercise. (Kari R., onset at age 28)
  • I’ve cut out dairy, sugar and flour and have felt so much better and am definitely better off now than I was three years ago when I was first diagnosed. (Lindsay, onset at age 29)
  • Eat softer food and more gravy. Get a feeding tube sooner than later. (Ryan, onset at age 30)
  • I have made no changes to my lazy, indulgent lifestyle. (Stephanie, onset at age 34)
  • Not much to say. I eat more protein purposely now. I’ve maintained my weight. I hate that I can’t exercise like I used to, I get too tired. I try to walk several times a week while I still can. (Melissa, 35 years old)
  • Try to eat organic foods and no msg or forms of it. (Jay, 38 years old)
  • Healthy diet and exercise will always help. (Tushar S., onset at age 40)
  • Movement of limbs is really important. Have someone do that for you. Feeding tube is a great thing. No one wants to watch their person starve to death. It made all the difference for us. *chubby PALS live longer & better quality of lives. (Steven, onset at age 44)
  • Don’t stop until you have too. Keep trying. (Thomas, onset at age 45)
  • I found that exercise made it worse, but if you don’t move your body, the body gets weak fast. (Scott, onset at age 46)
  • Loss in appetite. (Angela, 47 years old)
  • Pound on the calories, carbs, fat- whatever you want. I find exercise very fatiguing. (Vincent, onset at age 47)
  • Careful hand feeding, did exercise in bed until my legs gave up. (James, onset at age 51)
  • Try to keep weight up, don’t worry too much about “eating right”. Could be wrong, but seemed like exercise might have sped it along. (Lauri and Gene, 53 and 55 years old)
  • It was always difficult to find things that he would eat the further he progressed. Experimentation, and communication are key to finding what works with each patient. (Joseph, 54 years old)
  • Eating better than ever (feeding tube) and mainly organic. Started out with an exercise routine but not so much now. (Lesley, 56 years old)
  • If you can’t swallow, get the best liquid nutrition you can. (Lyle, onset at age 57)
  • Eat healthy, non-processed foods, keep moving or have others do passive range of motion. (Marta, onset at age 57).
  • Feeding tube right away as far as exercise it is useless! (Paulino, 58 years old)
  • Try anything. Eating without distractions really helps the eating process. Physiotherapy exercises good. Chiropractor excellent. (George, 59 years old)
  • Eat healthy but rich until you can’t. Stay active until you can’t. (Anna, 60 years old)
  • He tires easily, and it’s hard to figure out recipes that my husband can eat. (Jim, onset at age 60)
  • Smaller more frequent meals work better. Keep the calories high as much as possible. Eat whatever you can tolerate and keep down without choking. Exercise is very important to slow down muscle loss. (Steven, onset at age 60)
  • Kinesitherapy. (Malek, onset at age 61)
  • Coconut oil seems to help. Pool therapy is great. (John, onset at age 63)
  • Pureed and soft foods in latter months; Thickened water and juices. Balanced meals; not too many sweetened or rich desserts. Including sugar free nutritional drinks. (Glucerna.) He had gentle massage therapy at home to help with circulation and exercise his body; where he lived until his passing; in our own home under my care with one Tuesday 3 hour respite. Palliative care nurses visited regularly in the last weeks. He also had the beginnings of bedsores which were treated. For exercise, he walked until unable. (John, onset at age 64)
  • I wished I had continued with exercise, even though light, continue. Do eat organic if at possible, meats and vegetables. Follow a Candida diet or Paleo. (Katherine, onset at age 65)
  • Using my manual wheelchair has greatly improved my arm, pectoral and core abdominal strength. Prior dependence on power chair made my muscle strength diminish severely. Keep moving and exerting. (Elmer, onset at age 68)
  • Went full organic which helped tremendously. A range of motion exercises was all she was able to perform. (Maria, onset at age 72)
  • Purée purée purée. Plus swimming and working out the muscles at the gym that he could still use, mainly upper body. (Anonymous, onset at age 73)
  • Eating was difficult always… Even when it was puréed, swallowing was an issue. We only stretched her 1-2 times a day. She tried strength exercises early on when she thought she was recovering from a fractured ankle, but she only lost strength. (Irma, onset at age 77)
  • I wish he would agree to a lot healthier diet, although his is not that bad. Exercise exhausts him. (George, onset at age 78)
  • No diet, eat, eat and eat.. It depends on the severity of your disease, try to move. (Italo)
  • Try not to lose weight. (Anonymous)

ALS Treatments

Experience with treatments (medications, supportive care, surgery, etc.):

  • Riluzole, support group through the ALS Association and Multidisciplinary ALS Clinic every three months. They have been good to share information and get resources. (Audrey W., onset at age 21)
  • Lasik eye surgery- a must! A support group or psychiatrist are great. Take a lot of amino acids and nervous system supplements… Vitamin E, C. (Kari R., onset at age 26)
  • Eye surgery for vision- best thing ever! Get braces as soon as needed. Don’t be afraid to ask for help. (Kari R., onset at age 28)
  • I see a Naturopath and he has me on a lot of supplements that my body was lacking. (Lindsay, onset at age 29)
  • I have a DPS pacer- much more convenient than a bi pap. (Ryan, onset at age 30)
  • I take Rilutek to please my husband and my doctor. (Stephanie, onset at age 34)
  • Adverse reaction to most medications. I’m very sensitive to everything- chemicals/meds. (Jodi, onset at age 39)
  • Tried the AyurVed Shala in India, tried Tibetan Medicines, Allopathy, etc. (Tushar S., onset at age 40)
  • Morphine and Valium for sleep. (Brett, 43 years old)
  • Get hospice sooner than later. As soon as you can, wrap your head around the death sentence that ALS is – get hospice. They are such a circle of support. Get your volunteers in early- just to sit with them or whatever while you shower. Then the machines won’t be so scary later on when you REALLY need the help. (Steven, onset at age 44)
  • I take no prescription drugs. (Scott, onset at age 46)
  • The mucous thinning drugs work well. (Jeanine, 47 years old)
  • I take an amount of drugs that would choke a horse, and me as well. The only ones that are for ALS specifically are Baclofen and Rilutek. (Vincent, onset at age 47)
  • I was treated for Parkinson’s. At first there was little except ‘it’s all in your head’ type of treatment until I was Dx’t with it 5 years ago. Support is mostly from my wife who has stood with me through the ordeal. ALS Society of Alberta, and MediChair of Lethbridge have been so good with essentials, lift, bed, power chair, etc. (James, onset at age 51)
  • Don’t wait too long to get a feeding tube if you think you’d like one. If breathing is too compromised, they won’t do a feeding tube. (Lauri and Gene, 53 and 55 years old)
  • Hospice was very helpful both to myself, and to him! Medications for COPD, and pain control were helpful. The worst experience was when his doctor pushed him to get the H1N1 vaccine, against my recommendation. This vaccine nearly killed him outright within a month of getting it, roughly about halfway between diagnosis, and actually passing away. (Joseph, 54 years old)
  • First medication for paresis (gastro problems) and taking Lunasin and a ton of supplements for antioxidants , support from home care nurses and new doctor have been wonderful. (Lesley, 56 years old)
  • Do your research. (Lyle, onset at age 57)
  • Feeding tube- vented four month after diagnoses-morphine- antibiotics -family and ministers. (Paulino, 58 years old)
  • PSW three times a week shower/dress, eases family care-giving. (George, 59 years old)
  • Riluzol, Neudexta. Have feeding tube. (Anna, 60 years old)
  • Don’t put off having a feeding tube if you need it…it is a hell of a lot better than choking and all the stress of dealing with that fear. (Steven, onset at age 60)
  • Deanna Protocol was a positive experience for my Dad. (John, onset at age 63)
  • No surgeries; he refused all assistive devices, and let nature take it’s course! Here he was counseled by a professional and signed an advanced care directive as to his wishes. Rilutek med, Morphine; He was in a research study, but found it made a negative impact on his health, so he stopped taking the drug Lithium. Not good side effects. Palliative nurses near end of life; private care respite once a week. Doctored by appointment, research and over phone. (John, onset at age 64)
  • I choose not to do prescription meds because of my already compromised liver function. The digestive system is already not functioning well, (clean it up) heal your organs. Do not do formulas if you choose a feeding tube, blend whole nutritious foods for your body. I set up a whole Facebook support system for myself. I found ways to keep family & friends informed of my progress, keeping them feeling like they were bothering the family. (CARINGBRIDGE.org). (Katherine, onset age 65)
  • Lunacin. (Jane, 66 years old)
  • FEEDING TUBE DONE BEFORE NEEDED WAS GOOD DECISION. (Barbara, onset at age 67)
  • See above re Nuedexta and exercise. (Elmer, onset at age 68)
  • On mamy meds for stiffness and a med for respiratory. (Mary, onset at age 68)
  • Just starting down this road. (Lyle, onset at age 70)
  • Excellent supportive care was provided by the Alberta ALS society and the university hospital. (Maria, onset at age 72)
  • No treatment worked. Don’t bother with feeding tube, just prolongs things. We need assisted suicide in Canada. (Anonymous, onset at age 73)
  • Rilutek. (George, onset at age 76)
  • Medical marijuana helped her sleep better, acupuncture relaxed her and helped with sore muscles, hospice care provided anxiety control, pain control and a social worker to chat with her, a priest to help her spiritually, someone to bathe her twice a week and reiki and massages… (Irma, onset at age 77)
  • No medications other than supplements recommended. Supportive care has been most awesome through the VA. We could not have kept him at home without the VA and they have been wonderful. We are truly grateful for them. (George, onset at age 78)
  • There is no approved medication but Riluzole and Baclofen, everything else is what the patients are finding by themselves. (Italo)
  • Gabapentin seems to help with the pain. (Anonymous)

ALS Recommendations

Recommendations for someone with ALS:

  • Don’t wait until it’s too late, to get a cane, walker or wheelchair. Make important medical and legal decisions early. Get a Durable Power of Attorney (DPOA), Advanced Directive/Living Will early. Know who is going to be there and support your decisions. Decide early, but always revisit (if you feel necessary) your wants or thoughts on life-support (eg. tracheostomy surgery, being on a ventilator, and having a feeding tube). Create a binder that is easily accessible to all friends, care staff, emergency personnel, that includes your important information. Diagnosis, other past medical history, allergies, code status, medications, emergency contacts, insurance information, a copy of your advanced directive/living will/DPOA. I also have in mine favorite meals, normal routine/schedule. I’ve also got information of friends that could provide respite care. I’ve also got my final plans information in the back, which mortuary, services and things of that nature. (Audrey W., onset at age 21)
  • Get help. Use your resources. Get support. Have faith, have patience. (Kari R., onset at age 26)
  • Seek a Naturopath to see what your body is lacking (supplements), chiropractic care, cut out toxins, eat organic and cut out sugars, flour and dairy. Stress is a huge factor that kicks my symptoms in gear, so get back in church if you need to and work on your faith. I’ve also gotten into meditation which has also helped tremendously with stress. (Lindsay, onset at age 29)
  • Stay positive and pray for God’s guidance. (Ryan, onset at age 30)
  • Remove stress from your life. (Stephanie, onset at age 34)
  • Prepare mentally. (John, 37 years old)
  • Live life for today. (Randy, 38 years old)
  • Stay positive. Upset, frustration and stress make it worse. (Jodi, onset at age 39)
  • Keep Faith. (Tushar S., onset at age 40)
  • Don’t waste a moment. (Brett, 43 years old)
  • Live life to the fullest. Make memories with family and friends for them to hold onto when you are gone too soon. Ask for help. BORROW all you can, it is so hard to find new homes for the equipment. (Steven, onset at age 44)
  • Keep strong, positive and spend time with your loved ones. (Angela, 47 years old)
  • Very important to have a good Pulmonologist that has experience with ALS. (Jeanine, 47 years old)
  • Eat, drink and be merry, for tomorrow we die. (Vincent, onset at age 47)
  • Stay in contact with your local ALS Society. They are the best. Stay positive. There are admirable people out there you can look to as examples of courage. (James, onset at age 51)
  • Love your family and let them help you. Try to celebrate the small highlights in life. Get someone to check into social security, disability, medicaid, etc, to find out what resources are available. Seek help from the ALS Association – they are wonderful and can help with so many things. (Lauri and Gene, 53 and 55 years old)
  • Don’t let the world view of others cloud your own. Keep in mind that ALS is not necessarily just ONE disease, or affliction, but may be a combination of many different things that could contribute to this condition. There have been some cases of ALS reversals, but it is still unclear what causes this. (Joseph, 54 years old)
  • Get as much testing as you can. Don’t take no for an answer. (Lesley, 56 years old)
  • Live each day to the fullest, and do your research. Get involved in support groups. (Lyle, onset at age 57)
  • Get feeding tube early- Get vented when times comes, there is hope in the future for a cure, and been vented gives more time with loved ones and allows you to have sunshine days, and even allows for you moving around with a portable ventilator, its not the horror stories people say who has never been vented! The hope of a cure is better than laying in a early grave! WE are so close to an answer to what actually causes ALS and a cure! Stop killing us off from ignorance of others including doctors and neurologist! The vent is actual a relief breathing is easier and not labored more oxygen to everything ! (Paulino, 58 years old)
  • Rest often, may tire easily. (George, 59 years old)
  • Pray and try your best to hang in there.  (Anna, 60 years old)
  • Do not put ANYthing off! Do those things on your bucket list while you still can. Take those trips…have those parties…spend time with old dear friends and family. Join a good support group. Get a local support group of family friends and neighbors ASAP. Also, get all your business affairs in order and make sure your designated person, usually a spouse or family member, knows your final wishes and WHERE everything is located, and what to do with it all after you are gone! But do not give up hope! Keep updated on all the latest developments in treatment for ALS. (Steven, onset at age 60)
  • Steam cell might help, but doesn’t work with everyone/cannabis. (Malek, onset at age 61)
  • Get a good support team. (John, onset at age 63)
  • A plus to live at home with caregiver respites until passing. However John lived almost two years since his first symptoms. At the age of 66, Dec. 2009, ALS took him as his lung capacity deteriorated. God was our Saving Grace, friend support, visits and prayers. John was not diagnosed until 5 months after his first symptoms. He was not wheel chair bound until July of 2009. We took a last trip together in Palm Springs with another couple; he could walk but tired easily, so he used a wheelchair at airports. He loved it but was exhausted by the time we arrived home! It was worth it! (John, onset at age 64)
  • DON’T HESITATE TO TAKE ADVANTAGE OF ALL HELP. (Barbara, onset at age 67)
  • Find the ALS community and keep your mind active. Read, read and read some more, however you can. (Elmer, onset at age 68)
  • Keep fighting. (Mary, onset at age 68)
  • Please try and see if Deanna Protocol is right for you. (Maria, onset at age 72)
  • Try to laugh and enjoy the time you have left. (Anonymous, onset at age 73)
  • Live every day you can. Get a lot of hugs. (Kay, 73 years old)
  • Acupuncture, natural medications, eat healthy. (Irma, onset at age 77)
  • Take this time to live and love as best you can. Nothing else matters. (George, onset at age 78)
  • Participate in the forums about this disease through the internet and educate yourself on how to manage and get better with this disease. (Italo)
  • Stay strong..enjoy the time you have. Remember your family and friends care. Find a caregiver that knows about ALS. They will end up being your best friend. (Anonymous)

ALS Resources

Specific resources you’ve found most helpful:

  • ALSA, fellow group meetings, Facebook groups. (Kari R., onset at age 26)
  • Bible, Dr. Joe Dispenza (meditation), Naturopath, natural healing. (Lindsay, onset at age 29)
  • Local ALS chapter. (Ryan, onset at age 30)
  • Patientslikeme.com. (Stephanie, onset at age 34)
  • Going to clinic visits. Getting info from local ALS chapter. (Melissa, 35 years old)
  • ALS TDI forum, patients like me. (Jay, 38 years old)
  • Internet and FB groups. (Randy, 38 years old)
  • None yet. (Jodi, onset at age 39)
  • Internet. (Tushar S., onset at age 40)
  • ALS Association local chapter. (Brett, 43 years old)
  • ALSA of Michigan, the ALS Clinic! Loved clinic day, got to talk and plan with our TEAM of specialists. (Steven, onset at age 44)
  • ALS support group, clinic appointments. (Thomas, onset at age 45)
  • ALS FB sites. (Jeanine, 47 years old)
  • The ALS Society of Canada. (Vincent, onset at age 47)
  • Information from the ALS Society, your doctor, etc. (James, onset at age 51)
  • ALS Association, ALS group at hospital. (Lauri and Gene, 53 and 55 years old)
  • ALS support, and/or research groups on Facebook. These groups have a large amount of information concerning ALS, possible treatments, cure progress, and much more. (Joseph, 54 years old)
  • PatientsLikeMe website and the blog ALS From Both Sides and Facebook ALS sites. (Lesley, 56 years old)
  • Support groups. (Lyle, onset at age 57)
  • Online groups and newsletters. (Marta, onset at age 57)
  • http://www.alsfrombothsides.org. This website is awesome from an RN that got diagnosed with ALS herself a must READ! (Paulino, 58 years old)
  • Local ALS Society. (George, 59 years old)
  • Family and good friends. (Anna, 60 years old)
  • The ALS chapter in Syracuse, NY was a lot of help to us…getting us the equipment we needed in a prompt matter, and showing us how to properly use it. They have a closet of supplies that they loan out to patients in need. They were wonderful! (Steven, onset at age 60)
  • Israeli stem cell research. (Malek, onset at age 61)
  • ALS Caregivers FACEBOOK page. (John, onset at age 63)
  • ALS Canada. (Ron, onset at age 65)
  • Intent, Facebook, CaringBridge.org, I put together a resource list & shared it with my ALS Support group locally. (Katherine, onset at age 65)
  • ALS untangled. (Jane, 66 years old)
  • Veterans Administration. (Richard, 66 years old)
  • WEBSITE PATIENTS LIKE ME, LOCAL ALS SUPPORT GROUP. (Barbara, onset at age 67)
  • ALS Association, ALS Unraveled, VA for eligible military veterans, Paralyzed Veterans of America PVA. (Elmer, onset at age 68)
  • Support group. (Mary, onset at age 68)
  • Blogs, medical staff, ALS society. (Maria, onset at age 72)
  • Read the book, “Laugh I thought I’d die”. by Dennis Kay. He had ALS. (Anonymous, onset at age 73)
  • University of Miami. (Kay, 73 years old)
  • ALS Naturally. (Irma, onset at age 77)
  • The VA, the ALS Association. (George, onset at age 78)
  • Internet. (Italo)
  • ALS Association. Monthly meeting. (Anonymous)