35670-full
cinéphile 94
Sex: M
Data Quality: 3 stars
ALS: 4 yrs
Bi-Pap Wheelchair
Bulbar: mild
Arms: severe
Chest: moderate
Legs: severe
cinéphile 94
Male, 59 years
France
Primary Condition
ALS
First symptom
Diagnosis
Deceased
Jul 08, 2012
See more
  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

    Curcumin

      • Started: Jun 23, 2012
      • Current Dosage: 2 cap(s) daily
    • Purpose: Inflammation
    updated the treatment Curcumin Jul 04, 2012
  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

    Ashwagandha (Withania somnifera)

    updated the treatment Ashwagandha (Withania somnifera) Jun 30, 2012
    • Added
      • Started: May 31, 2012
      • Dosage: 1 tps. daily
      • Purpose: Inflammation and ALS (Amyotrophic Lateral Sclerosis)
      • May 31, 2012
    • Changed Dosage
      • Dosage: 4 g daily
      • Jun 10, 2012
    • Evaluated
    • Changed Dosage
      • Dosage: 2 g daily
      • Jun 28, 2012
  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

    Omega 3 EPA/DHA

      • Started: Jun 13, 2012
      • Current Dosage: 620 mg daily
    • Purpose: Inflammation
    updated the treatment Omega 3 EPA/DHA Jun 23, 2012
  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

    FRS: 8

    • mild Head
    • severe Arms
    • moderate Torso
    • severe Legs
    completed the FRS survey for Jun 21, 2012 Jun 21, 2012
  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

    Ashwagandha (Withania somnifera) Treatment Evaluation

    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate
    • Side Effects: NoneNoneNoneNoneNone
    • Adherence: AlwaysAlwaysAlwaysAlwaysAlways
    • Burden: A littleA littleA littleA littleA little
    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.
    added a treatment evaluation for Ashwagandha (Withania somnifera) Jun 21, 2012
  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

    Normast Treatment Evaluation

    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major
    • Side Effects: NoneNoneNoneNoneNone
    • Adherence: AlwaysAlwaysAlwaysAlwaysAlways
    • Burden: Not at allNot at allNot at allNot at allNot at all
    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…
    added a treatment evaluation for Normast Jun 20, 2012
  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

    Magnetic healer Treatment Evaluation

    • Perceived effectiveness for Fatigue: Led_efficacy_1Led_defaultLed_defaultLed_defaultNone
    • Side Effects: NoneNoneNoneNoneNone
    • Adherence: AlwaysAlwaysAlwaysAlwaysAlways
    • Burden: Not at allNot at allNot at allNot at allNot at all
    Advice & Tips
    didn't seem to work anymore
    added a treatment evaluation for Magnetic healer from Apr 30, 2012 Jun 10, 2012
  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: Apr 30, 2012
    • Reason: Did not seem to work
    stopped taking the treatment Magnetic healer Jun 10, 2012
  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: May 25, 2012
    • Reason: Course of treatment ended
    stopped taking the treatment Reishi Jun 10, 2012
  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: May 25, 2012
    • Reason: Course of treatment ended
    stopped taking the treatment Shitake Mushroom Powder Jun 10, 2012
  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: May 25, 2012
    • Reason: Course of treatment ended
    stopped taking the treatment Maitake Mushroom Powder Jun 10, 2012
  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

    104 lb BMI: 14.9

    updated his weight for Jun 8, 2012 Jun 08, 2012
  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
    star earnedstar earnedstar earned 3 stars
    earned a star! Jun 08, 2012
  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

    Normast Treatment Evaluation

    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major
    • Side Effects: NoneNoneNoneNoneNone
    • Adherence: AlwaysAlwaysAlwaysAlwaysAlways
    • Burden: Not at allNot at allNot at allNot at allNot at all
    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
    added a treatment evaluation for Normast from Jun 1, 2012 Jun 02, 2012
  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

    Low Dose Naltrexone (LDN) Treatment Evaluation

    • Perceived effectiveness for Support immune health: Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate
    • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Led_efficacy_2Led_efficacy_2Led_defaultLed_defaultSlight
    • Side Effects: NoneNoneNoneNoneNone
    • Adherence: AlwaysAlwaysAlwaysAlwaysAlways
    • Burden: Not at allNot at allNot at allNot at allNot at all
    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
    added a treatment evaluation for Low Dose Naltrexone (LDN) from May 21, 2012 May 24, 2012
  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: May 21, 2012
    • Reason: Other
    stopped taking the treatment Low Dose Naltrexone (LDN) May 24, 2012
  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

    Normast

    updated the treatment Normast May 24, 2012
    • Added
      • Started: May 22, 2012
      • Dosage: 1200 mg daily
      • Purpose: Inflammation and ALS (Amyotrophic Lateral Sclerosis)
      • May 22, 2012
    • Evaluated
    • Evaluated
  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
    star earnedstar earnedstar notearned 2 stars
    lost a star May 17, 2012
  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

    N-Acetylcysteine NAC

      • Started: Apr 20, 2012
      • Current Dosage: 600 mg daily
    • Purpose: ALS
    updated the treatment N-Acetylcysteine NAC May 12, 2012
  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

    N-Acetylcysteine NAC

      • Started: Apr 20, 2012
      • Current Dosage: 600 mg daily
    • Purpose: ALS
    updated the treatment N-Acetylcysteine NAC May 12, 2012
  21. Show more