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Thursday, July 31, 2014


Our dear friend and long time employee, Nancy Sampson, died last year 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!


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 lsampson_1@charter.net

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.


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

Click images for larger views.


Kim said...

Thank you. I can't say that enough times. My uncle has ALS, and while he is not at this point yet we know it's coming. Thank you so much for posting this and what a great idea.

Jeanne Lobsinger said...

Wow, what a great idea! My husband died of ALS in January. We were so frustrated with communication problems, but I could always read what he needed. He was very expressive with his eyes! I am sharing this with my ALS support group!!

Zentangle said...

Thanks Jeanne!


Genevieve said...

ALS is such a cruel disease. I will always remember Nancy as the first person I talked to at Zentangle Central when I wanted to register for certification. And I was very happy to meet her in person during CZT 4 certification. This is a wonderful thing you did for her, I will definitely share it wherever I can, including my Weekly Roundup blog post which has over 1,000 readers.

Lexey Johnson said...

Almost a year and half ago, a friend mine (whom I considered a family figure to me) lost her husband to this horrible disease; this would of been a great way for her to communicate with him if he were still alive today. I am also proud of the person she has become since his passing. Thank you Rick and Maria for posting this and it makes me appreciate life so much more :-)

Sue said...

Thank You, this is an awesome story.

brenda shaver shahin said...

What a beautiful story about a beautiful person! I too, remember Nancy very fondly at CZT8. She answered several questions for me and made me feel so very welcome. I often teach Sampson and tell her story to my students. Rick and Maria, you are both such lovely people and Nancy was very blessed to have you in her life. Now she will never be forgotten because of your special gift. Thank you for sharing.

Sue Clark said...

I remember Nancy very fondly also! What a blessing that you came up with this wonderful idea for her and her family, and now hopefully for many others suffering from this horrible illness. Thanks for sharing this heartwarming story with us.

Ellen said...

You are trully special. Making it possible for Nancy to communicate again must have been such a blessing for her and all that loved her. And sharing this wonderful idea with the world will help so much more people in need. Thank you for being creative and inventive and caring

trish said...

I don't know anyone with ALS but am moved beyond words at your gift. This is beautiful. Honestly...I'm at a loss for words and just overwhelmed emotionally.

Zentangle said...

Please see the Addendum we just added at the bottom.

Kathy Barringer said...

We have all been blessed with talents and a purpose in life. How wonderful that you were able to use yours to help not only Nancy and her family, but so many others by sharing this. A good friend of the family is in the earlier stages of ALS. I will definitely share this with him and his family. Thank you so much for this.

Debra Castaldi said...

What a great gift you have given. When there is something you or a love one needs and it is not there, make it! Kudos to you for seeing a solution and making Nancy and Len's (and friends) last times together more meaningful.
This would have help my mother communicate with my father, who cannot read lips, as mom had a tracheal tube in for her last 8 months. This would have made such a difference. I will definitely share!

Carol Dee, CZT said...

Such a wonderful, loving, inspirational story. Another Zentangle love story! Thanks for sharing. I know others will find such great ways to use this!

Nadine Cook said...

My husband died of ALS sixteen months ago. Zentangle has been my way of dealing with the grief. This is such a beautiful gift to give to those who struggle daily with the trials of this horrible disease. I know too well the silence that a caregiver faces when their loved one cannot communicate. Thank you for supporting ALS. It makes me love Zentangle even more!

1 Art Lady Kate, Tangles and More said...

With tears in my eyes.... What a wonderful gift to have given Nancy a way to communicate! I will share this where ever I can, and I have a feeling it can be used for more that just ALS. I had a very good friend who has passed from this disease and his wife is still very involved with helping in this community so I will gladly pass this on to her. I am also thinking that it would be useful for folks with dementia who have trouble finding the words they need.
Thank you! You continue to inspire!

Anonymous said...

As an Occupational Therapist, I see this type of communication all the time. With ALS, CVA (stroke), and other muscular dystrophies. It is amazing how many creative ways people can develop to communicate. The laser pointers are fabulous for someone with ALS due to the limited head movement, if they still have it, and I love that family friends created this after communication devices failed expectations. The progression of these diseases can be devastating, thank you for sharing the inspiration of your letter board. I will gladly share it with the OT world.

Beth Skipper said...

My mother died in 1998 from ALS complications. Anything, such as this system you have developed, that can preserve some quality of life and independence is a blessing. Thank you for using your creativity to fill this need.

Jane Monk said...

That is a beautiful story, very sad as I remember Nancy fondly from my time at CZT4. Nancy made me feel very welcome traveling all the way from Australia. Such wonderful ingenious invention. I can only imagine how it would have helped Nancy, her family and friends. xx

Anonymous said...

What an elegantly simple but profound solution. Bless you for seeing a solution and implementing it.

Eneida said...

Wow! What a wonderful idea. I lost one of my best friends to ALS a few years ago. She too used a voice box until it was no longer possible. It would have been incredible to have been able to communicate with her. This is going to help a lot of people. Thank you.