As her symptoms progressed, Nancy lost her ability to speak and move, except for slight head movements.
After several months of unsuccessfully trying to use a very expensive, speech-generating device (basically a computer with technology that tracked eye movements), Nancy and Len (her husband) were very frustrated.
When Maria and I visited, we were saddened to see her husband's frustration at not being able to communicate with his beloved wife. This frustration was amplified for everyone, because inside that still beautiful, but unresponsive body was the same vibrant and quick-witted Nancy we had always known and loved.
Len described how much hope they had placed in the high-tech speech device. Len was facing the prospects of never conversing again with his wife who was sitting right there, fully aware of everything that was going on. It now all felt hopeless.
That evening Maria had an idea.
She 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.
A recent article we read about ALS and its impact on communication with loved ones prompted us to share this.
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!
Note 1: The decorative pattern on Nancy's VoiceBox is the Zentangle tangle, sampson, which Nancy designed.
Note 2: Please follow all instructions and cautions that come with whatever laser device you use.
Note 3: We are working with Len to design a product that folks can buy with all profits to go directly to families caring for ALS patients. Len will manage it. In the meantime, a high resolution image of Nancy's VoiceBox can be downloaded from zentangle.com/images/voicebox.jpg
Note 4: For further information, email Nancy's husband, Len Sampson, at firstname.lastname@example.org
After posting this blog, we sent a link to Mike "Mish" Shedlock, who writes a popular and insightful financial blog, "Global Economic Trend Analysis." We sent it because Mish is active in raising funds to cure ALS because he recently lost his wife to this disease. Mish shared this blog post with his readers at this link. One of his readers posted this comment:
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.
In other words, this is not just for people with ALS. Thank you, Mish. Thank you, Johana.
Click images for larger views.