Forum Replies Created

  • henry

    Member
    September 3, 2021 at 6:00 am in reply to: SUPPLEMENTS TO SLOW ALS PROGRESSION

    I recommend to make urin, stool, hair, DNA and blood tests and take supplements based on lab results. This is still not a guaranty to stop progression, but at least you know that you need it. Just to buy stuff into the blue may be a complete waste of money and time.

    Henry

  • Another study didn’t see any diff in IGF-1 concentrations compared to healthy same-agers: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-1331.2009.02896.x

    This tells us that the normal aging is related to ALS (nothing new) and if you aged less your chance to survive is higher too. So anti-aging is a good thing 😉

  • IGF-1 is related to muscle growth, so this isnt very surprising. More interesting is how to naturally boost IGF-1 concentrations.

  • henry

    Member
    December 26, 2019 at 6:22 pm in reply to: RCH-4

    Hi Dagmar,

    I’m a nutritionist and I know more about ALS than most neurologists. The nutritionist in the clinic, if there is one at all, knows very little about ALS. The advice they are permitted to give is very limited too. Unless there is highly specialized clinic where they develop individual holistic treatment approaches, I would not expect much, but such clinic probably doesn’t exist jet anyway.

    Physical exercise can be very dangerous when it causes stress, as  well as too little activity.

    Medically-trained physical therapists often treat pALS like stroke patients, which is totally wrong.

    henry

     

  • henry

    Member
    October 29, 2019 at 7:22 pm in reply to: Diet and Supplements

    Unfortunately it is really hard to say if some food or supplement has positive impact on someones ALS progression. Most studies are mono-therapy studies and produce no results over 6 or 12 months. PALS would have to keep a symptom diary to be able to notice any major effect. ALS is a heterogeneous syndrome with many different causes, subsystems and comorbidities. Each pALS must discover themselves what works for them, based on lab tests, patient history, symptoms and records. This job is very complex and very hard to achieve without a nutritionist specialized in ALS. Most PALS take or eat something that they have heard may help, but discontinue since they dont understand their own pathological biochemistry, nor the biochemistry of the food or agent.