June, 2021
In our last episode, we were discussing cough management through nebulization. A nebulizer is used to turn solutions into gas so they can be inhaled through my respirator. The first solution is a vasodialator to open up the lungs. The second solution is merely saline which thins the secretions so you can hack them out of your throat and keep the coughing at bay. The solutions are inserted in line in a reservoir at the top of my head. The solution bubbles up so much that St. Laurel delightfully refers to it as my whale spout. This treatment leaves my face with a thin cake of salt which later drips into my eyes if my caregiver doesn’t wipe my face with a damp cloth. Typically a procedure called cough assist follows which is supposed to assist me with coughing up all the throat snot. It doesn’t work for me because I can no longer cough when I want.
Now the moment you’ve been waiting for, the drugs that affect your brain. The first one the good doctors at Stanford foisted on me was trazadone. They said it was for sleeping, but I suspect they wanted to get some kind of antidepressant down my throat lest I do something rash. It does help to jumpstart the sleep cascade particularly if you’ve binge watched The Expanse right before bedtime. An extra touch of melatonin doesn’t hurt either.
I’ve discussed Zoloft in passing before. It is yet another antidepressant anti anxiety drug that my doctors recommended. Since I’ve been taking it, I haven’t had any of the panic attacks that can plague us pALS. One of the cool side effects is that my dreams are incredibly vivid. One of these nights I hope I’ll be able to direct them. That way I can have the type of dream I can’t discuss on a family oriented blog.
Now to the truly dangerous drugs. The first of these is Ativan (thanks Janet for correcting my spelling!). St. Laurel had to show ID and fill out all sorts of extra paperwork when she picked up my prescription. I guess the stuff is addicting. I occasionally get coughing spasms so bad that I can’t breathe. Ativan has antiseizue properties. One squirt of the liquid form and I’m good, although drowsy for a few hours. The things I have to do to breathe around here.
The final one which I have yet to take is good old fashioned morphine, although the Doc says that methadone my be an option. I understand that this drug would be used in my case to relax breathing. It is not nice to Door Number Two, however, which means even more intestinal management which means even more colonic anarchy which means even more accidents in the LazyBoy on Wheels which means I progress from being a doorstop with a drooling problem to a morphine addict in a diaper.
Well there you have it. For those chemicals that come in pills, they are pulverized into submission by St. Laurel, mixed with water, and shot into my gut courtesy the feeding tube. I hate that, for me, drugs have changed from social consumanbles to a necessity. Still, I am gratified there are some therapies available while we work for the ultimate therapies that will rid us of this wretched disease.
See you next time.
Embrace The Suck 
Social Consumables to a Necessity. Kind of brings me back to my wine consumption days, albeit a far different reality. My necessity was managed through sobriety. Bob, I continue to get so much from your articulate use of words to paint the picture of you and Laure’s lives and appreciate you so much. at the risk of sounding insensitive, Happy Father’s day man. I hope you get a chance to see your wonderful daughter…
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Bob, another brilliant foray. Thank you for your gutsiness in the face of this cr**py hand (family oriented blog I’m told) and for giving us all some deeper insight into your reality. I’m looking forward to seeing you in person soon! As Bob and Ray used to say, “Hang by your thumbs!”.
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Hi Bob, Thanks for all the details about the drugs. It’s helpful to have straight up information. Sometimes I feel like the doctors try to beat around the bush on somethings like side effects etc. Graham is doing well right now. Still walking (wobbly and with a walker), talking (very slowly), eating (it tires his arm) and breathing (independently still). But most important, Graham continues to keep his sense of humor, like you do. I’m a more earnest style person, often miss the joke when folks with very, very dry humor are teasing me. So Graham keeps us laughing over here. Our latest mishaps have had to do with a wet suit designed for folks with mobility issues, unfortunately named The Floater and with testing out portable bidets for an upcoming trip which more sane people might advise us against, but, you know YOLO.
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Hi Bob, thanks again for your rich thoughts and interesting prose while living a so very constrained life. May you direct your dreams in ways you best not blog about.
And thank you Laurel for all you do to sustain Bob.
We have been back in Berkeley for two weeks, happy to be here for it is 20 degrees cooler here than in Castle Valley where we were so comfortable during the month of May.
Dick and Nancy
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Hi, Bob. I continue to be inspired by your stories! A blog about your vivid dreams would be awesome! OK, only the family-version, if you have to. Best to St. Laurel, as always!
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Interesting about Zoloft and the vivid dreams. Andrew’s dreams are so vivid, he acts them out, almost threw himself out of the bed (again) the other night! He seems to enjoy them. I, however, think twin beds may be in our future! Thank you for being so open and sharing yourself with us all. I love you, brother!❤️❤️❤️
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Happy Father’s Day, which sounds kind of oblivious to all you just described, but I do know what a caring and loving father you are, no matter what. Keep the blog going, even if at times I would like to close my eyes and make it all go away. Love to you and Laurel.
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Thanks actually for such insight. I had
Not known Ativan could help your
Extreme Coughing. Drugs have their place which of course is to benefit..,,
You astutely share though the cross over into disastrous for you is a fine line. Agree concrete colon contents are to be avoided as oh so painful. Hope you had a Great Dad’s Day – you’re the
Best love you all -Marie – PS on the other side (my mom’s) I’m in Mishicot
Wisconsin with cousin Amber & her
4 kids. Today we’ll visit their grandma.
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