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Reblog: Nancy's Voicebox

Reblog: Nancy's Voicebox

Rick writes:
In 2007, we started BLOG Zentangle and began our enjoyable series of conversations within our Zentangle community.

In reading through these blog posts with their insightful comments, we decided to bring a few of them to your attention from time to time. It is easy, for me anyway, to sometimes think of old information as stale information. But these insights and conversations are anything BUT stale!

Today, on Nancy's birthday, we invite you to revisit this post from 2014...

                     Begin previous post . . .                  

Our dear friend and long time employee, Nancy Sampson, died in 2013 of ALS (amyotrophic lateral sclerosis), also known as "Lou Gehrig's disease."

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!

R&M

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.
-----+-----

Addendum:
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:

Hello Mish

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.

Johana

In other words, this is not just for people with ALS. Thank you, Mish. Thank you, Johana.

Rick Roberts

35 comments

  • Listening to Maria talk about the beauty of drawing a circle without a protractor reminded me of an art teacher I had in Sitka. Circles were my thing to draw freehand cones not so much. But I have gone one step further..

    I was cleaning my old eclectic tea cups and started to use their different sizes for circles. No two are the same and many are a bit wonky ( My Aussie finds).
    I smile as zentangle has taught me to not be so rooted in a pattern that I might miss another gratitude event!

    PJ on

  • You two are an inspiration. Your creativity, love, compassion, and ingenuity shines through. So happy to be part of this community as a recently “graduated CZT36”. Happy Solstice to you all, and to a New Year filled with ease and peace.

    Molly on

  • Thank you for sharing this story!

    Josephine Wood on

  • i am so satisfacted.my english is poor, sorry :). thx for approving my user greetings wally

    wallyFen on

  • What a wonderful story. I am deeply touched by the creative approach used for Nancy’s Voice Box. I must admit I had a hard time finishing the story because of all the tears in my eyes. Thank you for sharing your compassion and creativity with the readers. May bright blessing follow all of you and your families during these unprecidented times.

    JENNIFER on

  • So wonderful to such a sad, yet heartwarming story at this time. Thank you so much sharing this story again. It brought tears to my eyes.

    Leslie Hancock on

  • Such a wonderful solution. I will pass this along, as a hospice nurse, I know it will be used

    Susan on

  • Such a beautiful story of the very long arm of care and compassion that Rick and Maria share with others. Their mantra of “one stroke at a time” extends to “one person at a time” and makes a world of difference in that life. Just as it has to all of ours.

    Bonnie Johnson on

  • My grandson was born with a genetic mutation that has left him unable to speak. He is just learning to read and use sign language to spell out words. Communication is difficult over zoom but this post gave me some ideas. Thanks

    Judith thompson on

  • I love that you make a difference everywhere..so blessed

    Jody Genovese on

  • So good to hear Nancy’s story since we so recently tangled Samson in CZT36 Seminar. I am a retired occupational therapist. OT’s and speech therapists have been using alphabet boards to help patient’s communicate. The use of laser pens is an addition I have not seen and is a great idea. And the alphabet boards I have used have not been so beautifully tangled. Nancy’s story is beautiful and a great tribute to her and her friends at Zentangle HQ.

    Joyce M Rosenberger on

  • I lost my husband to ALS in 2013. All I can say is this is AMAZING! If you knew the struggles that ALS patients and their caregivers face, you would know what a huge difference this makes in their lives. I am so proud to be a CZT with such an amazing company that has such compassion! Actually, I discovered Zentangle three months after my husband passed away, and it was what helped me deal with my own grief. Thank you Rick and Maria for not only changing Nancy’s life, but also my own.

    Nadine Holloway on

  • I cry in Nancy’s memory and laugh and smile about you two and your ingenuity. I know you all miss her. Please tell her husband hello from the Zentangle family. Perhaps we too will make an unexpected difference in someone’s life.

    Gale Sherman on

  • What a Sad a yet beautiful story…..God Bless the both of you, Rick and Maria, for all you do for so many people….

    Joy Dolan on

  • Fabulous story of helping those in need! I honor all that you, Maria & Rick, do to help & guide others to solutions for healing ! You have definitely showed me “the way” ! Appreciation & blessings to you !

    Pat F on

  • The world needs more problem solvers! That really is your occupation, in a way. You started this business with those tools. Too bad you can not box and sell that ability!

    CLARA A BRUNK on

  • How brilliant and yet so simple. Your creativity has no bounds. A beautiful lady, that I once worked with in the past, Adele Basheer, whose beautiful motivational messages form part of her artwork has one particular message that I have always loved, from memory it goes something like this “You are an angel cleverly disguised as a human being” which I feel applies to you guys as well.

    Wendy Tann on

  • Thank you for sharing this heart warming memory. I am a newbie to Zentangle and have been enjoying reading all the past newsletters and learning the tangles from the step outs. I have just started the project packs and love the videos and conversations. Zentangle was introduced to me at a time when I realized I had to give up my ceramic art. It is a perfect replacement and couldn’t have come at a better time, during the pandemic. So glad you decided to share this gift with the world.

    Nola on

  • We have been going through this same situation with my MIL. She is 94, has ALS and can’t speak. This is a wonderful idea.

    Sharon M DeLong on

  • When I worked as an RN Case Manager in hospice (10 years), I had a number of patients with ALS. Interestingly, they were all young and many of them had been extremely physically active prior to their diagnosis. It was tragic to see their decline. I do believe that one of them had some sort of communication device that worked well and I think it may have been funded by a foundation for the blind (Braille). I think Rick and Maria’s invention was novel and was and is helpful to so many. I can see where stroke victims who have lost their ability to speak clearly might benefit greatly.

    Paula Schneider on

  • My mother passed from ALS in 1979. Her disease was caused by taking a rushed-to-market, untested swine flu vaccine in 1977 for an “epidemic” that never materialized. Her speech was one of the first things to go. She was still able to write enough for us to communicate for necessities, but a casual conversation was almost impossible. Fortunately, she and I are enough alike that we were able to understand each other in other ways. I can see lots of applications for this tool. Wish I had had this 40 years ago. Thanks so much for all you do!!

    Deborah Alborell on

  • I am overwhelmed at your kindness and creativity. What a blessing you were to her and many others as they share it with others.
    I will be for sure to share with my friends who have family members that have these issues mentioned. Thank you for giving the exact dimensions and costs. That is too a blessing.

    Glenda Dudley on

  • I I love how fresh minds come up with new solutions. Ricks tinkering ability extended Maria’s calligraphy to a solution for their friend

    Way to go!

    Lisa Hoesing on

  • Hearing this beautiful story again, fills me with gratitude for all you two do/did to make life more livable. Sending thanks to both of you for sharing your inventiveness and creativity. ❤️

    Judith Rae Shamp on

  • Ohhh what an amazing history
    Thank you so much

    Belen Bausela on

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