April, 2021
One of the many impacts of ALS is the loss of diaphragm strength and breathing ability. To mitigate this minor inconvenience, mechanical approaches are available to force air into the lungs.
One invasive techienique is to affix surgically a tube to your trachea which connects to a breathing machine. This is a permanent pulmonary remodel which cannot be removed even when honored vaccinated guests arrive. Care and feeding can be challenging, especially after surgery, although I think it can be disconnected for showering (but don’t quote me on that). About 15% of pALS go through the procedure and I am not going to be one of them. I do note that an ALS hero, Steve Gleason, has one as did another ALS hero, Charlie Wedermeyer. So if any of you pALS out there decide to go this route, you’re in good company.
I have adopted a noninvasive approach which amounts to a 22-hour a day CPAP (I think) strapped to my face. A mask fits over my mouth and up against my snout. The assembly is held by straps around and over my head with an air tube intake at the very top. The air intake is attached to a tube which is attached to a respirator unit. St. Laurel refers to the top intake tube as my whale spout. The air flow used to run through a humidifier which caused so much condensation at the top intake tube that the condensed water would gurgle, making me sound like a whale spout.
While we’re on the subject, there is another group of sound effects that emanate courtesy of the squishy face mask. Bluntly put, the mask has a fit which leaves much to be desired. Adjustments are often necessary, a task that falls onto St. Laurel and the Caregivers. Pending adjustment, the mask holds forth with a cacophony that guarantees a sleepless night, because the mask commonly disadjusts after bedtime.
The top award winner has got to be the sound of my own breathing. The ill fitting face mask acts like a resonating chamber providing a sinister depth and reverberation to the air flow. Its location close to my ear amplifies the mix, especially when there is a leak. The resulting noise is pure Darth Vader, albeit on the treble side because I can’t bear to wear the dark helmet.
Coming in a close second is what St. Laurel calls the horn section. On the low end is a rumbling leak that is best described as a reverse tuba fart, if such a thing exists. On the other end is a wheezing screech that combines an Arturo Sandoval double high C with coarsly manicured fingernails on the blackboard. Lovely.
I’m tethered to this monstrosity except during dump and wipe, or wash and wipe, cycles. Thank the Goddess that St. Laurel and the Caregivers have become quite adept at maneuvering the assemblage through our humble abode, or at least from dining room to music room and back again. The drivers have to take care that the unit does not stray too far from me lest the mask turns into a wild horse bit.
There is also a portable respirator unit that hooks onto the back of the LazyBoy on Wheels, which theoretically will allow me to be transported to doctor appointments and other delights. It performs admirably when tested in the wild.
As you would expect the whole mess runs courtesy the nearest wall socket or in unit five hour battery. Given the storm door has closed in these Bay Areas, there’s little chance the power could go down over the next six or seven months so I can breathe easy. Right?
See you next time.
Embrace The Suck 
Dear Bob,
Finally reading this post, which I loved, along with your song, “Roadhouse,” especially the shots of you at the keyboard. What a great group, both musically and in solidarity with one another. I’m so glad you were a part of it and that it’s still going strong.
Love,
Carolyn
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So my comment is that there is more than one saint in your humble abode, Bob. It’s hard to read “I Sound Like Darth Vader” and realize that you can still laugh or at least grimace at your condition. Being surrounded by love and having Saint Laurel on your side makes all the difference, I know. I’m curious about the two ALS heroes you mentioned, and would love to read a post about them and how they were heroes in dealing with this disease. I’m also interested in knowing about Stephen Hawking, and how he handled his illness for so many years.
Love, Carolyn
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Bob- your imagery and sense of humor are amazing and humbling. Thank you for sharing your realities with us in such a real and yet hopeful way. With appreciation – Deb
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I wonder if some small holes of different sizes in the mask might create a Westminster Chime Melody without effect on function?
Take care brother HAWG,
Bruce
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Bob, thanks for sharing your journey. You continue to write better than I can, or ever could. Your humor continues to provide a delight in this often dreary world,
Blessings to you both,
Art
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You are one amazing human being. And so is St. Laurel. I feel genuine awe when I read your posts — your sense of humor (I guess senses since Laurel gets credit for the whale spout, among other things) is so –well, I’ve sat here for a few minutes trying to find the right word. Wonderful. Humbling. And, yes, amazing, given what you are facing now with this mask contraption. And to think there are people out there whining about having to wear a simple mask . . .
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I love you posts Bob. I look forward to receiving them each Friday afternoon. I especially enjoyed the posts about Legally Blue. The joy the band and band relationships brought you was apparent in every line. Memories of good times and fun, loving relationships are a treasure. I’m praying for you and your family daily.
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Bob, the Bob and Laurel team; I don’t have to try to imagine what this experience is, you describe it so perfectly, so perfectly that I am left felling both hopeful and exhausted and fortunate to be part of your life’s adventures (because you make them sound like adventures). Since I wail about every inconvenience in my life, your missives also remind me to be ….much more humble. Thank . Love, Jeanne
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So no chance for even a small moment of the Vader helmet…? Not a problem, I can see you in the costume clearly. And I am sure that there is such a musical references as a tuba fart. For sure. Think of all the tuba players you have ever seen…just sayin’…
Your amigo,
Kurt
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Hi Bob, it’s wonderful to read about your experiences. I love how you describe the cpap, the mask, whale spout lol. I look forward to reading more.
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