Join the ALS Boogie Board Club
OK, so now I’m an official member of the ALS Boogie Board Club! No, it’s not a club for surfer-dudes with ALS. I’m using a Boogie Board Jot 8.5 eWriter, a unique gadget that replaces writing with pen and paper. I received it during my recent visit to the ALS clinic, thanks to the ALS Association Arizona Chapter.
What is a Boogie Board eWriter?
It’s a small, electronic writing tablet that I can write on with quick thoughts or notes to show to someone else. Then press a button and the screen is erased. For us old-timers, think Etch A Sketch. For you techies out there, it uses advanced liquid crystal technology. My Boogie Board is a handy size, 8.5 inches by 5.5 inches, only ¼-inch thick, and it comes with its own writing stylus.
The ALS connection
Besides being a device that keeps kids occupied with endless games of tic-tac-toe and hangman, Boogie Boards have been embraced by a variety of users. These range from schools, which give them to students to help reduce paper waste, to cancer patients following voice-box surgery, to ALS patients living with dysarthria.
Nanci Ryder, a Hollywood publicist who was diagnosed with ALS in 2014, had used a Boogie Board for several years. When Kent Displays, the company that makes Boogie Boards, found out in 2016, it became a key sponsor of the Los Angeles County ALS Walk, as well as sponsor of Team Nanci.
Filling in the gap
My own ALS-related dysarthria isn’t so bad. Well, sort of. For instance, I know that when I concentrate on proper breathing, pronunciation and use my “Echo-voice,” others can understand me. Well, sort of.
But put me in a crowded restaurant with people chatting, dishes clattering and background music, and there’s just no hope of hearing me above the din.
At a recent meeting, while struggling to pay attention to the speaker, I casually leaned over and whispered in my friend’s ear, “Are you as bored as I am?” Only I forgot I don’t whisper anymore! My one-tone, single-volume voice growled the question loud enough to startle those seated two rows away. Immediately, I wished I had a button to press that would erase me!
So I’m hoping to use my Boogie Board to fill in the gap ― my speech gap. In restaurants, I’ll use it to answer my table mates and write out simple instructions like “hold the onions and the pickles.”
My Boogie Board will serve as my whisper as well as my yell.
Do you have ALS-related dysarthria or know someone who does? If so, consider using a Boogie Board. It might just be a new voice for you.
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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.
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Comments
Mike Leist
I use a Boogie Board everyday. On the back, I have a written message I’ve taped to it that says, “I am voice impaired. I hear and understand you just fine.” Inevitably, I have some that speak louder and slower to me, assuming I am deaf or cognitively impaired, and this simple message conveys I am not.
Dagmar Munn
What a great idea Mike! I will add that to the back of my board as well. Thank you!
Joan W Hornbuckle
I have bulbar onset ALS and have been using my boogie board about six months so I guess that makes me a member of the club. It is a valuable tool for those who cannot speak.
Jeanette Sherk
I also have bulbar onset and my voice is pretty bad. I have been thinking about a Boogie Board. What size would you recommend?
Dagmar Munn
Jeanette - - go to the web link that is in the article. It will take you to the Boogie Board site with all the sizes. Most folks seem to find the Jot 8.5 a convenient size. Amazon also has some good prices this time of year.
Janet Rosin
As long as one has the ability to write, the Boogie Board is awesome. It is my "voice" now that I am mostly unintelligible but I also have my voice banked on my iPad app Predictable which I can use too. All these conveniences take a bit of getting used as I sink into my world of quietness, but, I am ever so thankful for having alternative ways to communicate.
Christine MacLeod
My Mum has bulbar onset too and has been using boogie board for 6 months. Best and easiest thing she has used. We recommend it to everyone we meet in the same situation.
Patsy
I have been recommended this a the first tool to deal with the fact that my voice is going. It should arrive today or tomorrow and I cannot wait to use it! I like the idea of putting the message on the back - thanks. I was in a noisy restaurant 3 nights ago and found myself writing on the top of the leftovers container to communicate. The Boogie Board will be much better!
Dagmar Munn
I agree Patsy! I myself am happy to not have to pantomime 'hold the onions,' anymore! :-) Enjoy your new board.
Veda Desikan
My son has Bulbar ALS but his hands are also weak. So he cannot write. Will Boogie be rad work for him. If not can you suggest something else? Thanks
Veda
Dagmar Munn
Veda - - I am new to using a Boogie Board myself, so unfortunately I can't give you any advice. Perhaps some of our readers have suggestions...???
Pravin
Hello all,
My father 75 years old just got diagnosed ALS in left hand fingers. He has started reluzole and aravon(radicava). We are seeing some stem therapy feedback on youtube and curious how safe and effective it would be. If anyone has such experience, please let me know.
Thanks
Pravin
Patsy
I have bulbar onset ALS and ordered a board recently. It is SO DARK, I find it impossible to read what I write as do others. Am I doing something wrong? Wish the screen was lighter. Help?
Dagmar Munn
Patsy - - Not sure about that... however, I would think the company would be willing to work with you regarding your board's issues. My board has a dark background and when I write the letters show up in bright fluorescent green. Perhaps making the letters wider would help? Using the other end of the stylus (rounded end) my letters look like that of a marking pen. Hope this helps you.