Forum Replies Created

  • Janice

    Member
    November 2, 2021 at 4:33 pm in reply to: I NO LONGER SWALLOW

    I TAKE A FEW PROTEIN POWDERS AND I SEARCH THEM TO BE NO SUGAR AND GLUTEN.  I USE PRODUCTS FROM AMAZON. I JUST PURCHASED A CANNISTER OF MACROLIFE – MACRO MEAL A SUPERFOOD.  WHEN I TAKE THIS IN THE MORNING I DON’T USUALLY FEEL SLEEPY IN THE AFTERNOONS.

    I’LL START THIS EVENING AND POST MY EFFORTS.

     

  • Janice

    Member
    October 15, 2021 at 8:38 am in reply to: Familial ALS

    THANK YOU MEREDITH WITH THIS INFORMATION.  I’LL TALK WITH MY PCP AND THE ALS DOCTOR REGARDING THIS.  JAN

  • Janice

    Member
    October 14, 2021 at 6:59 pm in reply to: Familial ALS

    MY MOTHER AND HER 3 BROTHERS HAD ALZHEIMERS.  I WAS DIAGNOSED WITH BULBAR ALS THIS SPRING.  MY HUSBAND BUD PASSED ON 10-10-2016 AND WE ATE A LOT OF SUGAR IN SWEETS AT OUR PICNICS AND MY SISTER’S FAMILY BIRTHDAYS AND CHRISTMAS GET TO-GETHERS.  I DO NOT EAT ICECREAM OR SWEETS NOW.  I PUREE ALL MY FOOD FOR THE TUBE FEEDING AND STILL CAN WALK AROUND, DO THE COOKING FOR BOTH MY SON AND ME. I’M GRATEFUL TO LIVE WITH MY SON AND TO WAKE UP EVERY DAY, THANK YOU LORD!

  • Janice

    Member
    October 11, 2021 at 12:23 pm in reply to: Member Check In (pALS, caregivers, and other community members)

    HELLO TODAY – I HAVE BULBAR ALS AND NEUROPATHY.  I TAKE AMITRIPYLINE 50MG AT NIGHT AND IT HELPS WITH NEUROPATHY.  I’VE ALSO TAKEN MANY SUPPLEMENTS FOR PAIN.  DOES ANYONE HAVE OTHER IDEAS FOR PAIN.  JAN WEST

  • Janice

    Member
    September 30, 2021 at 4:49 pm in reply to: Member Check In (pALS, caregivers, and other community members)

    Hello all – I will get stem cells this year.  They really worked well last year.  They took the pain away.  I’m glad I moved to NC 2 years ago with my eldest son, Mike.  Jan West

  • Janice

    Member
    September 30, 2021 at 11:38 am in reply to: Member Check In (pALS, caregivers, and other community members)

    Hello everyone – does anyone have bulbar ALS which I have?  I would appreciate your thoughts on this and thank you!   Janice West

  • Janice

    Member
    September 10, 2021 at 12:18 pm in reply to: Stem Cell therapy for ALS

    HELLO YES I’VE HAD 2CC OF STEM CELLS IN AUGUST 2020 AND MY SON PAID FOR IT.  I FELT BETTER FOR MONTHS AND IT LASTS 9 MONTHS AND I’LL TRY IT AGAIN.

  • Janice

    Member
    December 31, 2020 at 8:48 am in reply to: Reflections and Looking Ahead

    Thank you for this forum. I realize now how many people have ALS. I never would expect these symptoms but in my body they are now swelling muscles. I can still walk and do my chores but wonder how much longer can I exist.

  • Janice

    Member
    November 26, 2020 at 5:10 pm in reply to: Living Longer with ALS

    Hello this is Jan from NC and I had 2cc of stem cells on October 24, 2020. In the past 3 years I’ve had prediabetes and no meds because my numbers were lower. I eat organic food and puree it because I’ve lost my chewing. In the past I took three different meds for acid reflux. After that, I lost my voice. I take many supplements especially for my bowels and some for ALS which I found on the internet. I walk when weather permits. I just got fitted with a MedPro breathing unit and I used it 4 times a day and will try to sleep with it.