Amyotrophic Lateral Sclerosis (ALS) with Brooke Eby

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  • เผยแพร่เมื่อ 26 พ.ย. 2024

ความคิดเห็น • 45

  • @jklscrochetthisthat905
    @jklscrochetthisthat905 4 หลายเดือนก่อน +7

    I'm someone who has personally felt the devastation of ALS. I just lost my classmate Steve last month. He was the 4th person I knew to pass away from ALS. This disease is not as rare as they would like us to think. The more faces we have representing ALS, the better. Thank you, Brooke, for being one of those faces. May God bless you and keep you. You are in my prayers 🙏 ❤️ Jan

  • @DeEtte3
    @DeEtte3 10 หลายเดือนก่อน +21

    I have genetic ALS. I relate to so much of your journey! I am 72 and i thank God for letting me live this long!

  • @christineweitz5747
    @christineweitz5747 5 หลายเดือนก่อน +4

    Brooke is amazing. My 85 year old mother was diagnosed with bulbar ALS 1 year ago. She’s had a feeding tube for 9 months & cannot talk anymore. Very sad. She only has a few months left.

  • @mmmmlllljohn
    @mmmmlllljohn 10 หลายเดือนก่อน +9

    Brooke is a beautiful soul and she looks beautiful too. She will make a difference for this nasty disease. I will definitely be contributing to the fundraising for ALS. I will be praying for this cause. This is a great channel and I will check out your other videos. ❤️🇨🇦🙏

  • @gigyoung7181
    @gigyoung7181 6 หลายเดือนก่อน +2

    I’ve heard many ALS stories, they’re all touching, but Brooke’s ability to clearly explain this disease and it’s subtleties and nuances is impressive. She’s a great spokesperson - her looks help too, of course.

  • @nancynalepinski8705
    @nancynalepinski8705 4 หลายเดือนก่อน +2

    We love you, Brooke!

  • @bettinaskaalumgoul-jensen3881
    @bettinaskaalumgoul-jensen3881 8 หลายเดือนก่อน +6

    I just got the diagnose, after almost 4 years with dropfoot, and its still just my legs just like you. I live in Denmark

  • @ericwichelt5196
    @ericwichelt5196 ปีที่แล้ว +13

    Amen Brooke this disease and als diagnosis is very hard hard to deal with I considered suicide and cried two. Follow u and yours progress😢

    • @leaveittolefty
      @leaveittolefty 6 หลายเดือนก่อน +4

      i was diagnosed one week ago today. what made you change your mind? i am wondering what to do…

  • @brentpope100
    @brentpope100 ปีที่แล้ว +18

    Brooke, you are an inspiration and so brave in the way you are dealing with this. Hopefully you remain slow progressing until they can find a cure. There is a wonderful man over here Charlie Bird that has raised over 3 million euro in one year for MND research. It just needs funding, as I'm sure their is a cure out there. That group for young woman is brilliant, and you can share your positivity with them as well as the rest of the world. You have found your purpose x

    • @shirleypryor5092
      @shirleypryor5092 10 หลายเดือนก่อน +1

      What an amazing young woman. I believe you will help many. Sending prayers to you.

  • @traceybanting3952
    @traceybanting3952 3 หลายเดือนก่อน +1

    Wow! Just an amazing podcast; so inspiring too! 🥰🎈❤️😘

  • @lanabradley8016
    @lanabradley8016 หลายเดือนก่อน

    Prayers🙏

  • @gykg3202
    @gykg3202 10 หลายเดือนก่อน +4

    She is so pretty ❤😢

    • @LSUWarlan
      @LSUWarlan 9 หลายเดือนก่อน +1

      So if she was ugly you wouldn't care basically

  • @michelelindseth8250
    @michelelindseth8250 10 หลายเดือนก่อน +5

    It killed my dad and youngest brother

  • @60something4
    @60something4 10 หลายเดือนก่อน

    If newly diagnosed with ALS and just starting to show symptoms I would think medication that will halt or reverse would be fabulous. It is heart wrenching to know it failed for patients who were in further decline. Keep working on something for them, but that one medication should pass and be given to those just diagnosed.

    • @luzperez5251
      @luzperez5251 10 หลายเดือนก่อน

      I am so sorry

    • @RobdeKlerk-qg6lc
      @RobdeKlerk-qg6lc 9 หลายเดือนก่อน

      Is there a medicine ??

    • @60something4
      @60something4 9 หลายเดือนก่อน

      @@RobdeKlerk-qg6lc I heard they were waiting on something from the FDA, I am not sure if there is or isn’t. Truth be told not enough resources are spent on finding a cure or a medication to slow the progression significantly. Right now I believe the only approved medications they have will possibly extend life approx 6 moths. 25 years ago the approved or medication in trials possibly extended life by 3 months. Not much progress in 25.

    • @60something4
      @60something4 9 หลายเดือนก่อน +1

      @@luzperez5251 I do not have ALS my cousin, she is 52 was recently diagnosed and she has Bulbar ALS, it is more aggressive as it starts with having problems swallowing and slurred speech, the other starts in the limbs. As I said in my initial comment, this disease is heartbreaking and little to no hope for those diagnosed, it’s terminal.

  • @jndred
    @jndred 5 หลายเดือนก่อน +1

    you are so young..i lost my wife at 45 yrs old ..

  • @marcK599.
    @marcK599. 6 หลายเดือนก่อน

    Great video

  • @shanejohnson5446
    @shanejohnson5446 9 หลายเดือนก่อน +10

    You need to have a methylmalonic acid blood test. You might just have a low B12 at the tissue level, which causes symptoms that are often misdiagnosed as ALS. A normal B12 serum test is no good, you need to have the methylmalonic acid test. When this acid is elevated, it means your tissue B12 is low. This acid will eat the myelin sheaths off your nerves. It also blocks enzymes in the urea cycle that convert ammonia to urea, which causes an elevated ammonia level.

  • @DeEtte3
    @DeEtte3 10 หลายเดือนก่อน +1

    The 25 year old one put me in the hospital with sky rocketing blood pressure. I'm doing fine with the next one. Number newest is digusting!!! Tastes like grapefruit rinds ground up in a drink. Plus diarrhea after consumption...no way to live.

  • @carlymoore1935
    @carlymoore1935 11 หลายเดือนก่อน

    I have heard about people developing ig after lyme disease . I have had lyme and lots of strange neurogical symptoms so did a bjt of googling . Not saying that it is the case here. Of course not, but it is worth considering.

  • @isaiahexodus6383
    @isaiahexodus6383 6 หลายเดือนก่อน +1

    My 1st Doctor from private hospital said it's ALS i went also in public hospital the doctor said it's motor neurone disease. What is the difference of 2?

    • @loiscassels8966
      @loiscassels8966 6 หลายเดือนก่อน +2

      Same.

    • @ithappenedtomepod
      @ithappenedtomepod  6 หลายเดือนก่อน

      Hi Isaiah, that's a great question. ALS is a type of motor neuron disease. Here's a bit more information from Johns Hopkins in case it is helpful: www.hopkinsmedicine.org/health/conditions-and-diseases/amyotrophic-lateral-sclerosis-als#:~:text=ALS%20is%20a%20fatal%20motor,thinking%2C%20seeing%2C%20or%20hearing.

    • @NEGAN_Jane
      @NEGAN_Jane หลายเดือนก่อน +1

      In Australia and England, ALS is called Motor Neurone Disease MND.
      My father passed away from it in 2015. I'm in Australia.
      Love you, Brooke❤🎉

  • @nekodragon1249
    @nekodragon1249 11 หลายเดือนก่อน

    Brook you're a inspiration a quick question for you. Have you thought of stem cell to help or is that something possible. Just a nugget to ask you in my prayers ❤❤❤❤

    • @Trigger-xw9gq
      @Trigger-xw9gq 7 หลายเดือนก่อน

      There is no evidence that stem cell treatments do anything for MND. There are clinics who offer it and make all kinds of claims, but they are nothing but money-grabbing scammers.

  • @lydiamoore142
    @lydiamoore142 ปีที่แล้ว +2

    Prayers go out to you. Stay in the moment, and talk to Jesus, every day. He will become your best friend.

    • @waxdrwest
      @waxdrwest 11 หลายเดือนก่อน +3

      If your god is real , they're responsible for this

    • @arsenewenger30
      @arsenewenger30 9 หลายเดือนก่อน

      If god exists, why do good people get struck down with illnesses like this? But the worst type of people live a long healthy life?
      There is no GOD...trust me. I used to believe there was but it's all nonsense. It was something that was created to keep people on the straight and narrow. And probably to help people with the fear of dying.

    • @Trigger-xw9gq
      @Trigger-xw9gq 7 หลายเดือนก่อน

      God is an imaginary friend for grown-ups. Snap out of it, just like all of the thousands of other gods man has invented, the god of the bible does not exist.

  • @fufurabumbacka
    @fufurabumbacka ปีที่แล้ว +3

    ALS its like expiration date on human beeing. Its a gift, not so many ppl knows when they are suppose to die.

    • @Paratus7
      @Paratus7 ปีที่แล้ว +11

      Tell that to Als victims.

    • @louisgabriel9155
      @louisgabriel9155 ปีที่แล้ว +10

      A gift? That's one gift I wouldn't want😢

    • @ProfilingwithPatBrown
      @ProfilingwithPatBrown 11 หลายเดือนก่อน +9

      Sure. Nothing like a gift that destroys you day by day and makes life horrifying to try to live through to the end. If you think it is a gift, I wish you the luck of having it bestowed upon you.

    • @NEGAN_Jane
      @NEGAN_Jane หลายเดือนก่อน +1

      Tell that to my father who died from it.