1. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 shared details about Curcumin

    Dosage2 cap(s) daily (starting )
  2. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 decreased his Ashwagandha (Withania somnifera) dosage

    Dosage2 g daily (was 4 g daily until )
  3. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 shared details about Omega 3 EPA/DHA

    Dosage620 mg daily (starting )
  4. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 completed the FRS survey

    • FRS: 8
    • mild Head
    • severe Arms
    • moderate Torso
    • severe Legs
  5. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 added a treatment evaluation for Ashwagandha (Withania somnifera)

    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Moderate
    • Side Effects: None
    • Adherence: Always
    • Burden: A little
    • Dosage: 4 g Daily
    • Advice & Tips: I'm taking it along with normast. It is sometime after taking ashwaganda that I was able to say a few words aloud the first times.
  6. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 added a treatment evaluation for Normast

    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Major
    • Side Effects: None
    • Adherence: Always
    • Burden: Not at all
    • Dosage: 1200 mg Daily
    • Advice & Tips: 4 weeks of normast+ashwaganda + stretching exercices Breathing : a little better. More and more, I can whisper , sometimes I can even say a few words aloud. It means that my diaphragm is getting stronger. Right arm and right thumb: a little stronger Left arm and legs: new connections ( beginning of new movements) So far it’s working. Will it last ? We’ll see…
  7. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 added a treatment evaluation for Magnetic healer from

    • Perceived effectiveness for Fatigue: None
    • Side Effects: None
    • Adherence: Always
    • Burden: Not at all
    • Dosage: 10 min Weekly
    • Advice & Tips: didn't seem to work anymore
    didn't seem to work anymore
  8. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    Stopped Magnetic healer

    • Stopped:
    • Reasons: Did not seem to work
  9. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    Stopped Reishi

    • Stopped:
    • Reasons: Course of treatment ended
  10. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    Stopped Shitake Mushroom Powder

    • Stopped:
    • Reasons: Course of treatment ended
  11. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    Stopped Maitake Mushroom Powder

    • Stopped:
    • Reasons: Course of treatment ended
  12. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 became a 3 star data donor! star earnedstar earnedstar earned

  13. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 updated his weight

  14. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 added a treatment evaluation for Normast from

    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Major
    • Side Effects: None
    • Adherence: Always
    • Burden: Not at all
    • Dosage: 1200 mg Daily
    • Advice & Tips: Ten days of normast (tablets 600 mg x 2) Early May ALS had taken over: my breathing got worse, I needed my Bi-Pap almost 24h/24, I had no more appetite, my voice got weak, my speech was no longer understandable, excess saliva… Normast not only put a hold but I’ve been experiencing some improvements: Breathing: slightly better, I can breathe again 20’ without my Bi-Pap , I eat a little more. My voice is stronger, my speech is better Excess saliva: I’ve got a small window in the morning, and another one of around 2 hours in the afternoon during which my saliva is back to normal Arms: a little stronger I now hope that it’s only the beginning. We’ll see. I add some Indian ginseng believing the combination of the two will be more powerfull
  15. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 added a treatment evaluation for Low Dose Naltrexone (LDN) from

    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Slight
    • Perceived effectiveness for Support immune health: Moderate
    • Side Effects: None
    • Adherence: Always
    • Burden: Not at all
    • Dosage: 4.5 mg Daily
    • Advice & Tips: I had to stop in order to begin normast. Because LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication — such as Ultram (tramadol), morphine, Percocet, Duragesic patch or codeine-containing medication — should not take LDN until such medicine is completely out of one's system.
    • Cost: $25-49 monthly
  16. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    Stopped Low Dose Naltrexone (LDN)

    • Stopped:
    • Reasons: Other
  17. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 started taking Normast

    Dosage1200 mg daily (starting )
  18. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS
    First life (20-28): Rock singer,guitar player ,songwriter... http://www.myspace.com/stephanegranger ...............Second life (41-49): stock fund manager...... Third life (55-?): living with ALS......... Afterlife: ready to go peacefully.......... Married, 3 children(born 80,83,87)... I've been practicing breating exercices since october 2010 (yoga pranayama)... I started vitamines on April 2011, LDN, detoxifier & antioxydants from september/november 2011 It helped me a lot, I experienced some improvements!

    April 2011

    one hour of magnétic healer. 4 days later, I felt less tired. Combine with giving up rilutek (on march,31,2011),I've more appetite and a better sleep.Every week for several months he worked on me from a distance! I've been full of energy ever since.I've added some vitamines and an anti-inflammatory (Tic-tox). I've been feeling much better ever since.

    september/october

    I've added LDN to boost my immune system, grape seed extract, Zinc (antioxydants ) and a liver detoxifier following this australian PALS'advices : http://home.goulburn.net.au/~shackel/introduction.htm . I'm feeling even better.Some strengh is coming back in some of my muscles!

    january,28,2012

    My speech therapist has told me that the volume of my neck's muscles have increased!!!(I knew that my neck was stronger, but an increase in volume !!!) For me it means that ALS is reversible!!!

    March/April

    unfortunately I'm losing my voice. While some improvements in my arms and legs are going on from month to month, my breathing is getting worse: I need the Bi-Pap 22h/24 now...



  19. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS

    cinéphile 94 shared details about N-Acetylcysteine NAC

    Dosage600 mg daily (starting )
  20. 35670 thumb
    cinéphile 94
    Sex: M
    Data Quality: 3 stars
    Bulbar: mild
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: vg
    I have:
    ALS
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