Living With ALS: Clara’s Story

ALS can be a difficult disease to diagnose as many of the early signs and symptoms can mimic those of other conditions. In this video shared by Mike Brez, we meet Clara. Clara has recently been diagnosed with amyotrophic lateral sclerosis (ALS) after first being misdiagnosed with carpal tunnel syndrome.

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Clara talks us through her diagnosis process which took six months to reach the correct conclusion, and how quickly she has declined since the onset of her first symptoms. Her daughter, Laura, takes us through her mom’s daily routine of gentle stretching and talks about the assistance she needs, while Clara explains her current symptoms and how the disease has affected her body.

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ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

11 comments

  1. Tsipi says:

    I watched your video and my heart goes out to both of you. I lost my husband to ALS two years ago, and I know very well what you are going through. I’d like to share with you a tip that I got from a physiotherapist, which made the maneuvering from bed to wheelchair just a little bit easier. Get a turntable – a lazy susan that you put on the table (I think Ikea sells them for about 10 dollars) or something like that. Stick an antislip surface on the bottom. Then place it under your mother’s feet when you lift her up. That way you can do the turn to the wheelchair easily without the “little dance”.

    • Tim Bossie says:

      We are very sorry for your loss. Thank you for sharing your experience and your tip to not only help Clara, but other readers.

    • Tracy Riedel says:

      I was going to recommend this as well. I lost my mom in July and watching you two was like looking in the mirror.

      Also contact your local ALS chapter and see if they can get a lift for you. They won’t charge you anything. Soon you won’t be able to lift your mom. :(. Once the feet/legs go it’s extremely diffficult to do anything w/o a lift. I LOVE SHE HAS HER VOICE!!!!

  2. Donna Jean says:

    She needs a hoyer lift to help transfer her from point A to point B. It would be safer than how they are doing it now. She also needs a real hospital bed, a headmaster neck brace and a powered wheelchair. All these things, except the bed can be furnished by the ALS-Association. The bed she would need a script for from her Dr and Medicare/insurance would pay for it.

  3. Marizol Florez says:

    I lost my husband 1 month ago to ALS. I know what its like to move them from point A to B. Well I have a portable hoyer lift that i would love to donate. Please let me know.
    Big hug
    Marizol Florez

    • Ana maria says:

      Marizol im so sorry for your loss. My father was diagnosed 5 months ago and has been very difficult. We really appreciated if you can donate us the portable hoyer. Is getting more and more difficult to move him. Blessings and hugs. Ana maria Gschwendtner

  4. Robin M. Davis says:

    My brother has ALS. He was diagnosed about 2 years ago.
    In the beginning, friends and family mobilized to research the current research, treatments, clinical trials etc. We sent e-mails and made phone calls– to medical centers, doctors, research scientists. In the rare case that someone answered or responded, we were told that a variety of research has been done, hopeful research ( there are even YouTube videos of scientists getting awards for their research ) , but that clinical trials have been few and small and underfunded. The deadended-ness of it all was overwhelmingly disillusioning. Hopeless. Yes, we all got connected with the ALS foundation, my brother has had speech therapy and massages and assistive equipment– but it’s all about accepting, about ” living ” with ” it “, about living with horrific, terrifying decline, not about fighting or hope. There are online research articles about L-Serine, and about medical marijauna being helpful for maintaining health and muscle strength. Don’t all the ALS doctors read these too ?? Why didn’t they recommend/ facilitate him obtaining these BEFORE he lost 60 pounds He has the hereditary kind, which means I might get it, and my nieces, nephew and children might get it. And we’re encouraged to get genetic testing. For what ?? And even if we thought, well we may be contributing to research, they charge you nearly 1,000 $ for this testing. My niece wants to have more children, so she chose to be tested. We’ll have the results in 4 weeks. She went to Columbia medical center for the testing. You may be surprised to know that even genetic counsellors are not always compassionate. Sad. Thanks for listening.

  5. My son has als. Diagnosed 2 years ago. My desire is to find a support group near me. I live in a rural part of west Tennessee about 5 miles from Mississippi and 10 from Alabama. I can reach Florence Al Tupelo Ms. Memphis and Nashville are both over 2 hours.

    • Tim Bossie says:

      Hoping you are able to find a support group to help Barbara. Living in rural areas of the country can be quite limiting as far as groups and helps are.

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