For Fellow pALS

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November, 2021

As a fast progressor in ALS Land, I rapidly changed, in the course of less than two years, from a fully able human to a doorstop with a drooling problem This was an emotionally challenging stage for me. There wasn’t a day where I didn’t feel some function had been taken away. In the hope of making the journey of my fellow pALS less difficult, here’s what helped me.

Communication is key. More precisely maintaining my ability to communicate was and is key. I voice banked my voice through ModelTalker.org so my eye tracker voice would be mine, even though it sounds like a stoned robot. I waited too long before I got started as my voice was already starting to go so start ASAP if you haven’t done so already.

Then, get your doctor to write a prescription to consult with, and be trained by, a speech therapist who works in the field of augmentative and alternative communication, or AAC. I used Amy Roman at the Forbes Norris ALS Clinic in San Francisco to help me choose and use an eye tracker device. Amy is the guru of AAC. Get started early. Even though I was involved in a trial concerning eye tracker device choice over telemedicine, it took almost six months to get my permanent device. Fortunately Amy has access to loaner equipment. The devices can be frustrating, as my blogs describe, but they’re a whole lot better than nothing.

Be nice, especially to your caregivers and family. I honored this one in the breach more times than I can count. Lucky for me I don’t have prototemperol dementia so I really have no excuse for being a jerk. Think of it this way: You have an even more limited time on this planet so you might as well make your remaining days as pleasant as you can. When life throws you lemons, throw them back. Living happy is your best revenge against this wretched disease.

Visitors continue to help me stay connected and, in many cases, to laugh. I love humans, at least most of them, so visits enrich my spirit. I suspect that visits also enrich those who visit me, so I’m paying it forward, or something like that. They also get me out of my ALS headspace and provide much needed perspective. Visitors really keep me going.

I lowered my personal production expectations. Being unable to move and talk really nails your productivity. These days I’m happy if I can complete a couple of emails or make a dent in a future blog post. The rest of the time I’m binge watching cartoons like inside job on Netflix. My favorite character is Myc the Mushroom.

Drugs, specifically Zoloft, have helped keep the dementers of depression at bay. “You don’t have to feel this way,” said my neurologist, and I’m glad I took her up on it. Although I usually save mind altering drugs for social occasions, Dr. Zoloft has kept me on the straight and narrow so I can write blogs like this.

So there you have it. I hope my experience eases the path of my fellow pALS. As for the rest of you, I leave you with the platitude of your choice.

See you next time.

11 thoughts on “For Fellow pALS”

  1. There is no doubt that your blog helps others, pALS and each of us lucky enough to read this blog. I am grateful to you and Laurel for our friendship now spanning over 40 years. John and I must visit again soon. You fill us with gratitude and love. Each day is truly a gift. Thanks for all you give to each of us.

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  4. TOTAL/PURE INSPIRATION, INSPIRATION, HOW WELCOMED AND NEEDED. THANK YOU OUR GURU OF KEEPING AHEAD OF DAMAGING AND NEGATIVE ENERGY AND EMBRACING OUR …..LIVES….
    Jeanne

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  6. Amigo, you are a stone cold hero. I am staggered by your courage and optimism. It is an honor to know you. Thank you for sharing your journey, despite its challenges.

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  7. Hi Bob, as I mentioned before you excel in communication and I never fully knew it! Thank you over and over again for sharing so much! Hey, we are going to donate this year to an ALS organization that you recommend. Please share which organization will give the best bang for our buck…and if possible best care for you and all the pALS out there! By the way, I shared your Apricot memories with my parents, they loved it! We moved to Cupertino when your parents had moved from the Los Altos home to De Anza Oaks, and the valley had already changed so much. Great memories!

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  9. Bob San,
    Another great blog this week putting in perspective the choice to be happy and share moments with friends and family. We treasure your insight of life.
    Thank you for sharing.
    ❤️

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  10. Indeed, the notion that one can choose to be pleasant — and one’s orientation to life in general — was an epiphany I had in my 20s, and have had this sappy little aphorism posted on my wall ever since: “Attitude is everything. Pick a good one.” You certainly have! Love, Nancy

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  11. Bob. While you directed your words to pALS, the messages are important for all of us. It’s too easy to forget how finite and unknown our time is with each other. Communication is key in all relationships, and you overcame the challenges to keep that possible. But so many who can speak forget to share loving and healing and amusing words. Be nice. If that doesn’t nail it all. And visitors are important. It’s been too easy coming through the pandemic to forget the healing and uplift power of being in the presence of other people. I’m sorry I never met you in person. I’m grateful to have a glimpse into the incredible person you always were through this blog and through my limited but wonderful relationship with Laurel. Thank you for being a shining light to more people than you will know needed it.

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