creighton-rider
Forum Replies Created
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Hi Doug- I have had ALS for 16 years. As I my symptoms progressed, I experienced weak neck muscles way before my legs lost strength. I tried several “chin support” style braces, but couldn’t stand the way they restricted my jaw and kept me from pivoting my head or looking down. So i invented my own that fixed those problems. You can find it on my website http://www.stopheaddrop.com and see if this is what you are looking for.
Creighton
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Aw, no. So sorry to hear the news. He was a stalwart; it was always fun to read his articles and see what song he would weave in to the article. I will miss him. My condolences to you, Dagmar, as from the readers’ perspective it seems as one of your comrades has fallen. Hang in there and keep carrying the banner forward.
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…make that John Driskell Hopkins, aka “Hop”
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Live ’til you die
find my rambling thoughts about ALS at -
if he is still walking, check out stopheaddrop.com. For sitting, try Headmaster
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Ah, great topic, Dagmar. Since ALS is a progressive disease, our needs are a moving target. As a result, my favorite tools have changed quite a bit though my twelve years of life with ALS. My journey started with the loss of the use of my hands and arms. My speech was still fine, so Dragon Dictation was high on my list, as I could quickly type away without the use of my hands. Which was great. Until my voice decayed enough that the software had trouble understanding me.
Similarly, my legs remained strong but my neck got weak, and I couldn’t hold my head up very long while standing or walking. At that point, the Suteki Head Support System (stopheaddrop.com) became invaluable to me. [Full disclosure- I invented it for myself and now sell it online]. I could walk upright with good posture and see where I was going.Which was great. Until I got too unsteady on my feet.
Great. So now that it’s too tiring and risky to walk more than a few dozen steps at a time, now what? Unlike most of the other respondents to your post, I can’t use my hands. Indoors, I push myself around in my manual wheelchair by my feet. But all of the scooters and such mentioned in the other comments won’t work for me. But a couple of years ago, a friend found a great solution for my situation. It is called the HoverSeat. This is clearly not for everyone, as you need your feet to steer and drive it, and I need assistance sitting down on it and getting up afterwards. But it is comfortable, inexpensive, light weight, and oh-so-fun to drive. Check out http://www.hoverseat.us for details.
Next year, my favorite thing may be a motorized wheelchair with foot controls, or an Eye Gaze device like a Tobii for text to speech.
But overall, my hands down favorite (pun intended) is my Toto Washlet toilet seat. I have had one since 2000 with nary a problem. There are many different brands of the bidet-style toilet like the Toto, so shop around.You and your caregiver will love it.
I have a couple of lists of favorite tools on my dusty old blog, live-til-you-die There are several items there that were really useful, but this comment is getting too long so I will refer you there.
Again, thanks for the great topic
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Thanks Lisa. Feel free to share it!
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Thank you Steve. I’m sorry about your Dad. It’s a terrible disease indeed.
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Thanks Len! I love the music genre.
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hi guys- I recently wrote a song about ALS and wanted to share it with the community for ALS Awarenesses month. How do I do that? It is already up on YouTube.
Thanks !
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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.
Creighton