December, 2020
Before we get started a special thanks to all of you who shared relentlessly. Last Monday the site was viewed by more than a hundred visitors with almost seven hundred page views. That’s a whole lot of procrastination.
Now back to our regularly scheduled program.
As you read on keep in mind that this disease was progressing and creating a moving target for the doctors. As a result, each doctor was presented with different symptoms and conditions. I was beginning to sound like a medical school exam.
When we last left, the surgeon wanted to fuse my spine. I know, surgeons got to surgeon. Because fusion was going to impact my skiing, I pursued a second opinion.
Surgeon Number Two takes me through the now familiar exam and is metaphorically shaking his head. He says Surgeon Number One is very reputable but that my presentation to him isn’t consistent with Surgeon Number One’s diagnosis or even the old plates taken in June. Wants to do a full head to tail MRI. When he tells me I’ll be in the white chamber of claustrophobia for three hours, I tell him to call the anesthesiologist and tell them to bring the menu. Insurance gets pissy but finally relents.
Best MRI ever. I don’t remember a thing.
Now we are into September and I am starting to use a cane. Law partner says I look distinguished. Surgeon Number Two says tests are inconclusive. Did I mention the CT Scan? Time to go to the neurologist. Surgeon Number Two is unhappy and I’m nervous.
Weeks later get in to see the neurologist. She is very clinical. Run through same examination and I’m not doing as well. She says could be ALS. I am stunned. She has to perform a nerve test. On October 11 the nerve test uncovers the devastating diagnosis. Neuron functionality on the right has reduced and decreased functionality is presenting on the left. She refers me to Stanford and tells me to try to stay positive. She is shook and I am numb. I drive home on the freeway with the top down.
Well, there you have it and now you know. Still, there is a silver, well, tin, lining to this disaster. The Bay Area is home to three nationally recognized ALS clinics. We caught the disease early which made me more likely to be accepted into drug trials, such as the Centaur trial testing AMX0035 I blogged about earlier. My family has good insurance to cover medical expenses. Most of all I find myself encircled in a community of care, including you dear reader, that enriches and inspires. Thanks to you it’s just a lot easier to keep on keeping on.
Embrace The Suck 
Thanks for the “historical perspective.” Hopefully when COVID subsides I can once again “inspect” your Steinway.
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You are an inspiration to us Bob!! With what you are going through (and your family) you are still maintaing a sense of humor which truly shows us that we can handle just about anything as long as we have a positive attitude and are surrounded with love. You remind us of how blessed we are! Thank you! Hugs from Yvonne and Tom
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Waldo, glad to know The beginning of your journey. Very cool that you got to pick your own drug for the MRI, sounds like fun. Very frustrating to have two or three different opinions from two or three doctors I would guess. Hang in there and happy holidays to you and yours
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Hi Bob! I’m a friend of Amanda Martino’s (she actually worked for us as our nanny when our kids were young). I know your daughter Katie. Thanks so much for writing this blog. My husband Graham was diagnosed this past August (8/2020). Like you, he has an excellent sense of humor, which is like the tiny life ring we’re clutching to as we float through the shark ridden Pacific like that guy from unbreakable (except no raft…just the damn ring). I think you are about 18 months ahead of Graham (whose origin story is not so unlike yours). Just wanted you to know we’re following along and that our little life ring seems a little floatier when coupled with your humor. Sending lots of warmth and gratitude your way. Please know you are lighting the way for us. Keep writing. You’ve got readers who need your story!
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You certainly illustrate the ebb & flow of knowledge about neurology, nerves, bodies & diagnosis. And an awesome merry-go-round of mood. The chaos of your body begins to parallel the chaos of the universe—randomness trying to assert itself against the order within your body.
I am so impressed by your ability to hold your thoughts, organize them and visualize them into print. It demonstrates the man within.
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Amazing sense of humor in an unusually stressful situation.
And I thought 40 minutes in the MRI was excessive1 I am a little surprised that they could not do the MRI in three sections/sessions and join the images.
Love to you and Saint Laurel,
Dick
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Happy birthday to Laurel and all my best to you. Your writing is so great, your sense of absurdity undimmed.
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Since I came late to your blog, I’ve really appreciated this two-part account of the beginning and diagnosis. I’m awed anew by your equanimity and humor. And by your tenacity. I’m so pleased to hear that more people are reading your blog–I hope the number keeps multiplying. You’re such an inspiration.
Lynne
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Bob,
That a journey!! And as always your sense of humor and wonderful personality comes shining through.
Wishing you, Laurel, Katie and George a wonderful holiday season.
We look forward to seeing you when we are no longer restricted by COVID.
Rhonda
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Wild ride dude … If ya ever want your day broken up with some really bad Acoustic guitar and even worse vocals, you got my email, phone and home address … I’ll be there (for the next 8-12 months i could jam in the backyard …that should help with neighbor relations too … tin lining ! XO Bob … Kiss the girls for us; Peace and Love always…
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Hi, I’m not sure how I happened upon your blog but…I did. Coincidentally, I have been having ‘odd’ symptoms (muscle weakness, muscle twitching, some numbness) that will take me to a neurologist on January 4. It all came on so quickly. I have some real concerns because my dad had ALS (died @ 70 in 2001) though we always assumed it was because he was a firefighter (they have a higher incidence of ALS most likely due to the frequent inhalation of toxins) but my apprehension that it may have been the genetic version is rising because of my symptoms. Thanks for sharing your story. I am interested to keep track of you and your journey. Best, Jacqueline
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