• Posted by Eric Jensen on August 2, 2025 at 2:57 am

    I was diagnosed in 2011. I have gained 30lbs. Is this related to my slow progression? It started in my right foot drop and progressed slowly to now my left arm. Help….

    boj replied 1 week, 2 days ago 4 Members · 6 Replies
  • 6 Replies
  • Dagmar

    Member
    August 7, 2025 at 12:50 pm

    Hi eric, I don’t think gaining weight would be related to your rate of progression. Weight is affected by medications, intake of food, your inactivity, etc. This is something that your medical team would be able to tell you.

  • Eric Jensen

    Member
    August 7, 2025 at 2:14 pm

    Thank you Dagmar

  • Eric Jensen

    Member
    August 7, 2025 at 2:14 pm

    Lots of prednisone

    • Dagmar

      Member
      August 7, 2025 at 5:22 pm

      Prednisone has been known to lead to weight gain.

  • John Walker

    Member
    September 19, 2025 at 3:13 pm

    Hi Eric,

    I always lost and gained weight when I was Pre-ALS. I was told early in my ALS journey by my clinic that heavy people lived longer. So I gained 30 pounds. I don’t crave food and could easily lose the weight since I don’t like eating anymore. The food seems tasteless, but lately I’ve felt hungry and actually craved some kinds of food. My weight hasn’t changed much since I’ve gained it and it doesn’t vary +/-2 pounds. Recently in the 90+degree days I mowed my 6 acres of yard and lost 4 pounds. I felt weak and this alarmed me so I added calories and my belt indicates I’m “normal weight”.

    Note: I need a rollator to get around as I can barely walk. My mower is a 33HP Kubota with a 72 inch deck. It’s a Zero turn, so most of my physical effort involves arms and shoulders. I’m fairly good physically from the waist up. My legs have enough strength and coordination to work the deck controls. The hardest part of using my mower is getting off and on it.

  • boj

    Member
    September 25, 2025 at 9:47 pm

    Hey Eric,

    I started gaining weight right after I was diagnosed and it was suggested that I go on a high glycemic diet and ear 5 small meals per day. After gaining 6 pounds, I returned to my standard diet , less carbs and less sugar and eating only when I was hungry. I’m back to my diagnosis weight and feel better.

    On another note: let me recommend the Acre rollater. It’s more stable, lighter, and more maneuverable. I tried a standard rollater for a few months.

    Best wishes, enjoy the best of the Fall.

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