• Bill

    January 26, 2021 at 3:10 pm

    Being thumb first then fingers then wrist onset, I’ve used several different things past 3 years. Started with a wrist/thumb brace which really didn’t help at all. When my middle finger started to curl, I taped it to my ring finger which aided hand functionality for a year. I progressed from there to finger sleeves on middle and ring finger. I fashioned a homemade two finger sleeve to serve as a resting brace that I would wear for a few hours per day. Eventually my hand and wrist continued to atrophy and I got a otc wrist brace that I still use.  I also got a prescription resting brace that holds my two curling fingers out plus has wrist and forearm control. Since my problem is atrophy nothing much really helps now except the wrist brace which helps the very weak wrist slightly.
    Only advice id give is be creative and adaptive and improvise and use whatever helps you. I got the most use out of my hand as I could.

    • Creighton Rider

      January 29, 2021 at 9:50 am

      Hi Dagmar-

      My symptoms started with hand/arm weakness, but then affected my neck before my legs. I tried many neck braces before settling on a Headmaster for its ease of use. And although it gave me good support, I didn’t like the restrictions of fixed braces that prevented me from turning my head, talking, or looking down. I was tired of talking through my teeth all the time. I devised my own with a completely different approach that allows me to pivot, look up and down, and doesn’t touch my jaws so I can speak freely. It allowed me to keep walking, hiking, skiing, swimming, or just standing there. It’s not the solution for everyone, as it is targeted for an upright posture and ambulatory/semi ambulatory wearers, but it has been an invaluable tool in my quiver.

      I ended up building a website and have sold to clients with head drop all over the world. You can find the Head Support System at http://www.stopheaddrop.com

      It is definitely worth a look.


      • Dagmar

        January 29, 2021 at 11:01 am

        Wow! That is great work Creighton. I’m sure your Head Support System will be of help to other pALS experiencing head-drop.

  • Kathy Resnick

    January 26, 2021 at 5:32 pm

    Last year, I became the proud owner of an AFO for my right footdrop.  Before going in for my fitting, I checked out blogs, ALS sites and googled AFO’s.  There was not a lot of  “good/helpful”  information.  This latest article by Your ALS Guide‘ with the videos would have answered my questions.

    I am able to wear pants with semi cut boot legs and no one knows I am wearing a brace.  In warmer weather, I wear skirts and dresses below my knees and the brace is hardly noticeable.

    Next challenge, dress up my sneakers (or find a glitzy ones)  for my daughter’s wedding; taking sage advice from Dagmar, “adapt and cope in a positive manner”.


    • Dagmar

      January 26, 2021 at 6:57 pm

      Glitzy sneakers!! I say, go for it, Kathy 🙂

      I remember feeling embarrassed wearing my AFOs and trying to hide them. Then I turned a mental corner and thought, “Well, if people are going to stare at me, I’ll give them something fun to look at!” That began my zeal for wearing short pants and colorful, “happy” socks with my AFOs.

      How My AFOs Helped Me Learn to Live with ALS

  • David Crellin

    January 27, 2021 at 10:03 am

    Interesting timing: as a bit of a handyman (that was my occupation until ALS came along) I looked at my Ossur foot up brace and thought ‘I can do better than that.’ So out came my leather work kit, a pair of left-handed scissors (right hand not too good) and I got to work. An order for spare hooks for my old mountaineering gaiters arrived in two days time. I stitched a hook to the awfully designed tongue insert, cut off the hard and sharp plastic that had taken the skin off my big toe joint, and hooked the splint onto my laces.  Luxury!  I now have a brace that can quickly be moved to any shoe/boot, and as it pulls the tongue of the boot up, it reduces pressure.

    Now, do I start an online business?

    And it gets better: an old friend has so far knitted four pairs of zany woolen socks, and my sister has knitted two pairs of mohair socks.

    With a foot of snow forecast tonight, cosy feet and roaring wood stove make for perfection, with a new bottle of  Bowmore single malt to sip. Ahhhhhh….

    • Dagmar

      January 29, 2021 at 11:03 am

      David, it sounds like you should team up with Creighton (above) and build specialty products for pALS!

  • Deleted User

    Deleted User
    February 3, 2021 at 8:22 pm

    I am in Florida and it gets hot down here in the summer. Started with an AFO (Ankle-Foot Orthosis) in 2015, but by 2017 my leg was getting worse so the VA upgraded me to a KAFO (Knee-Ankle-Foot Orthosis). KAFO goes from the top of the thigh to the foot, and when its hot, I just wear shorts over it and leave the rest exposed. I get all kinds of looks but that’s ok, its comfortable. Long jeans in the hot weather is not even going to fly! I have 2 KAFO’s now!

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