August, 2020
It’s been so gratifying to see the response to this blog. A special thanks to all who have subscribed. Both of you. What has been even better are the comments and private emails catching up on what you and our mutual friends are up to. I should have gotten diseased sooner. Because you have been so forthcoming with me, I thought I would give you an update on my condition.
As is the case with your standard incurable neuromuscular illness, the key question on disease progression is how steep is the downhill slope. My doctors won’t tell me except to say that my muscle tone still looks good. Now if I could only use those muscles.
Here’s some specifics. I’ve lost almost 30 lbs since onset and my slow vital capacity, a measure of respiratory function, has dropped to slightly below 50%. I am essentially paralyzed below my neck which really sucks when my nose itches. Blood numbers are all good at least as of last February.
The worst development has been a sudden bitterness in wine which makes it undrinkable to me. Neurologist can’t figure it out. You lose a lot with this disease but this one is just beyond the pale. Fortunately, my sense of smell is unaffected so not all the joys of the grape have been denied. Just most of them.
If the loss of wine isn’t bad enough, the food part of the equation is approaching negative numbers. Chewing is tiring, the tongue won’t do what it is supposed to do, and swallowing is becoming a crap shoot. Laurel keeps offering to puree everything but there’s some places even I won’t go. So, to get the necessary calories, it’s the finest feeding tube cuisine from Abbott Laboratories. Nothing like a few fat syringes of brown sludge direct to the stomach to top off a delightful repast. Be careful though. Too much with your evening meal and you’ll wake up thinking dinner was scrap lumber with old paint sauce.
The reduction in oral functionality has resulted in a constant stream of spit traveling down my chin instead of where is supposed to go. To try to manage this damn drooling my salivary glans were recently pumped full of botox. The idea is to thicken my drool. A few days after the shots I had the worst cotton mouth I’ve had since my college days. When my saliva did come back it didn’t drool so much as it oozed. At least it’s now wrinkle free.
The spasticity in my legs continue. The slightest movement or anticipation and my left leg springs up like a 16 year old seeing his high school crush. I tried CBDs but they just gave me panic attacks which I had never had before and hope never to have again. For now I rely on baclofen.
Despite the physical challenges I have been kept from the bottomless abyss of despair by sunshine, happy thoughts, and a daily visit from Dr. Zoloft. All of that aside, it’s your collective good vibes that keep me going. So keep them coming!
Embrace The Suck 
Glad to hear you haven’t lost your sense of humor. Good to hear your voice! – KR
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Beyond the pale indeed. Thank you Bob for the insight into your experience. It’s a much appreciated gift. Karl Chandler
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Dear Bob & Laurel,
Reading through your recent posts leaves me sad and upset that this could happen to such a intelligent , athletic and great guy?
Wishful thinking but the only way is forward and it sounds like your weathering this ugly journey in good spirits. I am taken with your physical descriptions and laced with Bob’s humor. Also Bob our hearts go out to you, lovely Laurel and Katie. Did Katie get married recently? Maybe a grandchild in the near future? Anyway my dear friend keep up the good fight and know you have many concerned friends love you all.
I enjoy your clever and concise descriptions on one hand and the side is my heart is bleeding for a great family in a bad situation.
Love and virtual hugs…. Ken & Jing
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Hi, Bob . . . Now I really feel guilty. I moved to a senior living facility 9 months ago, and just last month got upgraded to a slightly larger unit (2 bedrooms, up from my 1 bedroom unit), with the 2nd bedroom designed to be my art studio/office, important to me as I have been in Jan’s, your mother-in-law’s painting ladies’ gang, for many wonderful years, and I’ve been unhappy because my facility is in intense lock down (some of our residents would be considered “nursing home-like” patients). I keep apologizing to the gang because I’m still unloading and “processing” what’s in the moving boxes and cannot largely leave the premises. Work, work, work, but nothing compared with not being able to enjoy my chardonnay (actually, any ole white wine would do, but chardonnay is my favorite!). So I do hope that your sense of taste will be returning. I can certainly commiserate, though of course I couldn’t possibly draw any kind of comparison. Believe me, I shall be lifting glass to you and your courage this evening! Kay
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Bob,
It is nice and refreshing to read your blog. Wish you always keep your optimism and good humor. Lots of people should learn from you.
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Geez Bob You are full of incredible descriptions and sadly eating that you so enjoyed Sounded like it’s awful. My only thought was smaller amounts more frequently but I’m sure you already tried that. I can’t imagine how it feels to have “wood” after the “sludge”…. not the wine 🍷 for dessert!
Your journey of weight loss is intense and I’d be happy to share my extra weight with you! A friend had a piece of sandpaper (fine) on a stick for a nose itch! But don’t over do it! I have some pictures I’ll send Laurel and summer family update -love Marie
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Hey Bob. Just tuned in to your channel, referred by Paul. Your sense of humor still shines. How are you listening to music? So sorry that wine is not enjoyable. What about any other types of alcohol? Keep writing! – Steve
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Hey Bob, your updates are informative and funny. You and Laurel are in our prayers. Not much goin on here at the compound. Just got my john deere running all by myself (rebuilt carb). – The acreage badly needed mowing. Wife is in kitchen turning our jalapenos and tomatoes into salsa, i’m about to dehydrate some figs. It’s effing hot – 108 today, already feels like 95! Seven eggs from the chickens this morning; pretty soon our cantaloupes will be ripe. We board a horse, she gave birth few months ago – we named him Hank. They see us and saunter to the fence for carrots. Been cutting and stacking wood in prep for winter (learned how to sharpen a chainsaw chain – you tube is very helpful). Generally the 5 acres keeps us busy. Any way it’s time to turn on the a.c. Take care my old friend.
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Bob – Tom and I are deeply saddened by this journey you have to experience. We are sooo very sorry! However, having said this, we marvel at your spirit, tenacity, profound sense of humor and writing (eyes) capability. We thoroughly enjoy, albeit at times a bit difficult, reading your blogs and please note you, Laurel and Katie are always in our prayers. We raise a glass you to, Bob!
Our Love – Yvonne and Tom
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Bob,
I love reading your posts and seeing that despite everything that is going on, your wonderful sense of humor still shines through. Nothing can take that away from you. I am very sorry to hear about the wine. Hopefully this will be a temporary distaste for the grape. I can’t even begin to imagine how difficult this is for you and I am so sorry for all that you are going throug. But you are surrounded by an amazing and loving wife and a wonderful daughter and you have many friends who love and care for you. Stay positive and please keep writing.
Love and virtual hugs,
Rhonda, Bob, Nicole and Rachel
BTW Rachel is doing very well as an assistant district attorney in Norfolk County (Massachusetts). Thanks for all of your input as she was going through law school.
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Bob,
You are an amazing human being. It’s people like you with your incredible spirit and humor that makes me wish I could live nearby. Those days at Berkeley I spent with you were too few. I remember going to one of your office Christmas parties after Berkeley and having a great time with you and some of your fellow attorneys. You never had a bad word to say and your humor always showed through. I love you Bob.
– Noel
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Glad too that you still have the same sardonic wit, Bob. Sorry you have to go through this, but it is good to be able to keep up. You and Laurel remain in my thoughts and prayers. I hope you aren’t too uncomfortable in the heat.
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Hi Bob,
I’m bowing deeply to you & sending many virtual hugs to you and your beautiful family.
Forgive me because I feel like such a sneak. Your experience is always so raw, sad, heartfelt, precious and humorous…powerful! I don’t know what to say, but eventually I have to say something. Thank you and I am praying for you.
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Waldo, Laurel miss you both XO
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I was telling a friend about embrace the suck and he wanted to know why you was ignoring “the blow.” I assured him that there was no disrespect intended And that Robin Williams, J Belushi and Bobbie De Niro had cleared a socially acceptable path for singing the blues of blow.
Sounds like you’ve got experimental taster buds 🌈 that occasionally get substituted by smellers. I am intrigued by the idea of scrap lumber with paint sauce – A wonderful juxtaposition of visuals with tastes.
so long as anticipation triggers one of your legs to spring up into alertness as if your high school crush has appeared in your presence, all is good.
Bob, you are a brilliant writer – could become the Mark Twain of SLA…
I look forward to many more of these perverse twists of human nature.
zorba aka the spouse of another Prevetti
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thank you for giving yourself to us
,<3
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