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    • #20673
      Dagmar Munn
      Keymaster

      Have you made any changes in your diet since being diagnosed with ALS? Were the changes recommended by your doctor or, of your own choosing? Has your diet had any effect on your ALS symptoms? Or helped your day-to-day health?

      What do you think about “special” ALS diets (and do they even exist)?

    • #20676
      Dagmar Munn
      Keymaster

      I was following a healthy vegetarian diet (allowing eggs & milk) for 10 years prior to my diagnosis. My neurologist told me I needed to eat more protein – – and I wasn’t interested in consuming a ton more “plant protein” (soy, peas, etc) – – so, I went right back to including chicken, fish, and beef in my diet.

      I feel fine. Having been eating “normal” foods for the past 11 years of my ALS. And find that having a more traditional (but still healthy) diet is one less thing to have to micro-manage for my caregiver husband and me.

    • #20682
      Susan guarcello
      Participant

      I have always had Avery low total cholesterol 140. When I was diagnosed with ALS I read fat protects neurons. So i starting eating fats. I’m eating cheese and meat now. I don’t know if it helps my neurons. I do know that the protein helps. I have more energy when I eat more protein.

      • #20750
        Duane
        Participant

        I believe low cholesterol is part of the problem with ALS.

         

        • #20752
          Susan guarcello
          Participant

          Duane,do you have or have you had low cholesterol? I’m curious how many of us have low cholesterol.

      • #20760
        Shawn Shevalier
        Participant

        Try adding guacamole to your diet, it’s high in good fats.

        I’ve always had good cholesterol numbers, but recently the number spiked (all of it HDL).
        The Doc said to keep at it.

    • #20687
      Jim Conner
      Participant

      I was told by my nutritionist to add a protein powder to my smoothie in the morning to help keep my weight up, I have lost 20 lbs. in 2 years. I use Hammer Nutrition Whey Protein Powder. Tasty stuff. My grand daughter plays HS volleyball and takes it after practice and games.

      I live with 4 very good cooks so I eat good balanced meals with a lot of smoked meats. I just don’t eat as much per meal as I used to. More smaller meals.

    • #20732
      Mike Leist
      Participant

      While there’s no “proven” diet for ALS success, I wanted to do all I could to give my body it’s best chance to battle it. This really became even more important when I started losing the ability to swallow, and had to use my feeding tube more and more. When insurance provides you with liquid “nutrition”, they will normally send you something like Jevity. If you read the nutritional label, this is not the type of stuff you want to rely on. It will give you calories and protein, but when there’s lots of ingredients you can’t pronounce, it’s pretty far removed from real food. I use Liquid Hope now as a good packaged liquid nutrition, along with smoothie recipes I’ve created based on research, and had reviewed by the nutritionist at the ALS clinic.

      I once heard Dr. Bedlack, who tracks ALS reversals, say that one thing all reversals had in common is that all of them were on plant-based diets. The smoothies start with lots of fruits and veggies based on the Wahl Protocol. Dr. Terry Wahl was able to reverse many of her MS symptoms through nutrition. In each smoothie are two servings of veggies, one being either kale or spinach, and the other being things like cabbage, broccoli, sweet potatoes, mushrooms,, cauliflower, etc. I include 1 serving of darker fruits, like blackberries, blueberries, strawberries, acai, etc. Each smoothie then has plant-based protein powder, and 3 servings of healthy fats. These include nuts like almonds, walnuts, and cashews, and other fats like olive oil, and coconut oil. I also add fiber. I include supplements that are, like the foods, anti-inflammatory and antioxidants. Examples include Theracumin, Ceylon cinnamon, resveratol, and a few vitamins. My neurologist also suggested L-carnitine may also have some benefits at a cellular level for delivering energy to neurons. There’s other supplements that many other ALS patients take, but supplements are really a whole separate conversation, and what I mentioned are really just the tip of the iceberg of that topic.

      • #20733
        Dagmar Munn
        Keymaster

        Mike, I don’t recall ever hearing Dr. Bedlack say the reversals he was studying were all on plant-based diets. Nor, do I remember them mentioning it when they had interviews. Perhaps you were confused… because, he did say a common supplement they were taking was Theracumin.

        Terry Wahl stopped her MS symptoms via her drastic change in diet. However, MS differs from ALS: https://alsnewstoday.com/differences-between-als-and-ms/

        Eating a healthy diet does help our bodies deal with the ongoing challenges of ALS

        • #20743
          Mike Leist
          Participant

          Dagmar –

          I heard Dr. Bedlack say this at the Hope Symposium in Orlando in 2016. I am not confused. And yes, I realize MS is not ALS. That is why I specified that. Hopefully you also noticed my caveat regarding how there’s no proven ALS diet, and that I stated she has MS. I certainly don’t mean to be confusing. And to clarify, no, all reversals did not have Theracumin in common. Theracumin is a high bio-available brand name derivative of curcumin, which is the neuro-protective active ingredient in turmeric. He decided to run a trial using Theracumin because of some of the commonalities he saw with turmeric usage, and the potential for its properties.

    • #20737
      Bill
      Participant

      How has my diet changed since ALS? Ive likely had ALS for at least  6 or 7 years so I’m just speaking in terms of my ALS diagnosis nearly 4 years ago. For the first two years no change at all. Just a relatively healthy balanced diet. As I neared third year I started to lose weight. I tracked intake carefully and find I need a lot of calories to hold ground. I don’t do anything different but try to eat more and supplement in between regular meals with Ensure. I also eat cookies and ice cream for the calories. With my chewing issues it is just too slow to solely eat enough quality primary foods.

    • #20740
      Jim Conner
      Participant

      No joke- have to cut my beer intake to………………hardly ever. Seems the alcohol hits me faster and harder than ever. I’m a cheap date.

      All I have added is a whey protein powder to my fruit smoothie in the morning. I have always eaten healthy and I just continued it.

    • #20751
      Duane
      Participant

      I’m careful with dry particulate foods such as rice, nuts.  Otherwise I eat most things orally.  Have had ALS since 2005-6 and am pretty stable.

    • #20758
      Lisa
      Participant

      I have been very “lucky” up to this point that I do not have any bulbar symptoms and my swallowing has not been affected….yet. I have not suffered any weight loss and have in fact gained weight since my diagnosis just over a year ago.  So I eat whatever I want…whenever I want.  It’s my way of sticking it to this dreadful disease before it can take that enjoyment away from me!  Honestly it’s still a fairly balanced diet but with all of the potato chips and ice cream that I want in between meals. That being said, I have noticed that my body does better if I make sure I get plenty of protein and also my body does poorly if I wait too long to eat.  My muscles feel completely drained if it’s been too long since a meal or snack and it takes a while (hours) to recover from that.

    • #20767
      Mary Tiknis
      Participant

      I have no appetite I was trying to force myself to eat but I wasn’t getting enough calories I was losing weight now I have a feeding tube and take Jevity three times a day I still try to eat a little bit here and there but it is a good thing that I’m getting enough calories now

      • This reply was modified 2 days, 15 hours ago by Mary Tiknis.
    • #20779
      Carol
      Participant

      Based on recommendations on this site I asked my ALS medical team about Theracumin. They advised against taking many supplements because they suppress appetite but said ok to try Theracumin, citing a recent study.  3 days on it completely knocked out my appetite.  Which prompted me to inspect the shelf full of old ‘supplements ‘ I still had from 5 years ago (pre-als) which I bought from weight loss center; sure enough, cumin was one. Immediately after i stopped taking Theracumin my appetite returned.

      • #20781

        > They advised against taking many supplements because they suppress appetite
        Thanks for the information, I didn’t know that. It’s very important indeed.
        Losing appetite is perhaps the worst thing that could happen to pALS, because they need more calories than a healthy person (at least when mobility is not lost)

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