[Bill Ott]

I’m a hypochondriac. If you tell me the symptoms and give me a week I’ll have them. As such, for me, subjective measurements are useless. Subjectively, I am a mess. 🙂

But I do have a few objective measurements that help mitigate my hypochondria. I take 22 pills a day, 11 in the morning and 11 after dinner. Even though I am convinced I have a swallowing problem, I swallow all 11 pills in one gulp. So, maybe my swallowing isn’t so bad. 🙂  I exercise every day, convinced it’s the last day I’ll be able to do the exercises. At the end of the exercise I get off the floor w/o any assistance, mechanical or otherwise, so maybe I’ll be able to exercise tomorrow. 🙂  The objective measurements do more for me in bolstering my confidence than any AFRS score.

I am looking for more objective measurements. Anyone have suggestions?

[Bill Ott]

It appears that everyone approaches ALS from a different direction. To some extent I am still in denial, but my denial affects my willingness to embrace help from the ALS Association, not me relationship with friends and family. When I was diagnosed in August of last year I send the following email to everyone I knew (100 of people). I only got back a handful of replies about my broken leg. 🙂

____________________________________________

August 2018

Dear Family, Friends and Colleagues,

As many of you know, my great-grandparents, grandparents, aunts, uncles, and Mother have all lived into their 90’s. My mother will be 94 this September. I am 70 years old and in great shape, usually biking 3 or 4 miles a day. So my expectation was to have another 20 to 25 years of retirement. That is still possible, but not likely.

For the past 8 months I have been on a quest to get to the root cause of my difficulty walking. There is no pain, just difficulty walking. It started about nine months ago when I noticed that my right foot lacked the strength to stand on my toes. About a month ago, after six different doctors, three MRI’s, numerous X-rays, various blood tests, a nerve conduction test, and an Electromyography (EMG), I received the presumptive diagnosis. The focus, since then, has been on eliminating other diseases that mimic its symptoms. Last Wednesday, the final results came in eliminating all of the mimics.

I have Amyotrophic Lateral Sclerosis (ALS), the same disorder that afflicted Lou Gehrig and Stephen Hawking. It afflicts 1 in every 50,000 people, each year. That’s one of the reasons why the search took so long. The MD’s started by eliminating the most likely causes and progressed to the least likely, until only ALS was left.

While current literature suggests a life expectancy of two to five years from the onset of symptoms, actual life expectancy is quite varying. Steven Hawking lived 55 years after his onset of symptoms, Lou Gehrig lived three. I’m not aiming for another 55 yrs, but have every intention of beating Lou Gehrig. 🙂

So what does this mean? Right now, very little. I have been accepted into the Duke ALS Clinic. It is a world class Clinic with patients from all over. It’s run as a team sport. I meet with 6 different specialists, periodically, each of whom evaluates some aspect of the disorder’s progression. On my first visit, I was told numerous times that my progression appears to be very slow. Their collective rating ALS Functional Rating Score (AFRS) was 45 out of 48, 48 being no issues or concerns. In fact the only thing they asked me to do was to gain 10lbs. I am working on that. I’ll see the team again in about a month and then about every three months, assuming the progress continues at it’s current rate.

No doubt, going forward, there will be changes, but not this year or next. I asked the Clinic about travel restrictions over the next eighteen months and was told to have fun and eat a lot. My wife and I have travel plans through 2019. We are not changing any of them. Assuming eating and drinking go hand in hand, I asked about wine consumption. They said alcohol has no impact on progression, so feel free to imbibe. I plan to. 🙂

At this point there is no need for condolences or even a response. Since retiring for the last time in May of 2015, pretty much every day has been a great day. I’m not expecting that to change any time soon. In any case, I intend to master my circumstances, not be mastered by them. Hopefully our paths will cross again.

PS. I have seen the speed at which information circulates, often morphing along the way. I wanted to share this with all of you simultaneously, reducing the likelihood of me hearing about my broken leg. 🙂

[Bill Ott]

Hi, Victor.  There is one last hope I cling to. Doctor Rick Bedlack, head of the Duke ALS Clinic, has found 60 people who rapidly progressed to Hospice care and then reversed, as in fully recovered. So I’m not giving up. I fully intend to reverse, if they don’t find a cure first. 🙂

[Bill Ott]

Thanks, Dagmar.  At 9 years in, you are an inspiration to me.   I am stable and still walking though not well, It never occurred to me that I could be 9 years in.

Just before the August 2018 email went out, I called my Mom to give her my diagnosis. I was a bit stressed about the call, not knowing how she’d take it. Her only response was “Well, I have a few more years left in me. As long as you out live me I’ll be fine”. I told her it was a deal. Two weeks later she called me and told me she had recently met an 108 year old lady and had decided she was going to live to at least 108. I told her that we may have to renegotiate our deal. 🙂  She laughed. I am still not sure if she is serious. 🙂