Occasionally I receive a touching email that also offers a practical solution to extreme challenges. This is one of those times. Please consider this email from reader “Zentangle“.
I have been following your blog for years now. Time is precious and not many writers “stick” . . . but you have. Thank you for your insights and passion throughout the years.
Your stories of your wife’s and your struggle with ALS had a powerful impact because during that time a dear friend and employee, Nancy, was in the same struggle.
My wife and I worked out a novel way for Nancy to communicate. We just posted a blog about it and I wanted you to be the first person I told.
With our belated sympathies, gratitude and heartfelt best wishes,
Rick Roberts & Maria Thomas
Let’s hop over to Zentangle’s most recent blog entry, simply labeled “ALS“.
The article notes how Maria Thomas came up with an idea to get around the ALS communication problem.
I went through the same things.
My wife Joanne could not talk but she could write. Then she lost that ability but could manage to push a button say select phrases. Then everything went.
With that personal background, here is the idea that Maria Thomas came up with after several months of unsuccessfully trying to use a very expensive, speech-generating device (basically a computer with technology that tracked eye movements).
From Zentangle …
She [Maria] lettered the alphabet, numbers and some key phrases on a large 3 x 4 foot piece of 1/2 inch foam board. I ordered a bunch of laser pointers. We got a pair of Nancy’s sunglasses and removed the lenses. We used electrical tape to attached two small laser pointers with switches (so they would stay on without keeping them pressed in) to Nancy’s eyeglass frames. We used two laser pointers so the frames were balanced, and if a battery ran out in one laser, the other could be immediately turned on.
Because the board was placed across the room from her, all Nancy had to do was move her head ever so slightly to point out the letters. The large board enabled Nancy to speak to the whole room or to one person. It worked perfectly from the very first minute she used it.
We remember fondly when we first set it up, that in spite of her circumstances, one of her first “spellings” was to tell a joke to her husband.
Suddenly, the Nancy we all knew was back . . . chatting, teasing and cracking jokes. She could “talk” again with her beloved husband, her family and her friends.
Nancy used her board to communicate with her family for months until just hours before she left.
The laser pointers were about $9 each. We had the foam board in our studio (a 40 x 60 inch half-inch thick foam board costs about $25). We used an old pair of Nancy’s glasses. Total cost: about $45.
Her care givers had not seen anything like this before. As far as we know, this idea was not in use in this circumstance.
In Nancy Sampson’s memory, please share this idea with anyone you know who can use it. This idea is made available under a Creative Commons Attribution-NonCommercial-ShareAlike License.
In her memory, we call it “Nancy’s VoiceBox.”
We love you, Nancy!
Nancy’s Voicebox is a fantastic idea. But I think we can easily improve on it.
The problem I see is that “Nancy” (anyone with ALS), might not have the ability to turn their head and point a laser at a word or phrase.
The obvious solution is Google Glass. As long as someone can move their eye just a slight bit (something they probably can do) Google Glass will work.
I believe Steve Hawking, renown theoretical physicist could greatly benefit from such a device.
I am going to pass this on to my contacts at Google, and also to the Les Turner ALS foundation.
Those interested in my experiences with Lou Gherig’s disease can read about them here …
April 2, 2012: My Wife Joanne Has ALS, Lou Gehrig’s Disease
May 16, 2012: My Wife Joanne Has Passed Away; Stop and Smell the Lilacs
May 14, 2013: Wine Country Conference Speaker Presentations All Posted (Hussman, Chanos, Martenson, Pettis, Mauldin, Mish)
In honor of Joanne and Nancy, please consider making a Donation to the Les Turner ALS foundation.
From Reader Johana …
Thank you for this idea. My mother has a stroke the eliminated her ability to speech. Someone made flash cards for her, but that never worked very well. I can see that the speech board containing many options plus the ability to spell out works all in one place would have been very valuable. My mother died in early 2010, but I am motivated to pass on this information.
Mike “Mish” Shedlock