We were told by Dr. Richard Bernstein that I had an appointment at the Mayo Clinic in Jacksonville, Florida in approximately a week.

“I thought it was in Minneapolis,” I said.

“No, it’s in Rochester, your hometown.”

“I’m from New York, not Minnesota,” I told the neurologist.

“Then, why go all the way to Minnesota — or New York, or even Arizona, when there is a perfectly good facility in Florida, just one state down?’’ the good doctor asked, innocently.

We got up at 8 AM the appointed Thursday, gave the mother-in-law her final instructions (she was still with us back then), and set out for Jacksonville
and the Mayo Clinic (353 miles away). I remember little about the drive down Interstate #75 (Christine drove both ways, as was her preference — I could not manipulate the vehicle, anyway, with one hand, having sold my car and given up my driver’s license last summer), but I do recall stopping at a roadside
stand; they provided us with the most delicious ’peach drink’ I ever tasted. A quart was nearly gone in no time at all.

Relying on our electronic direction-finder, we turned ‘right’ when we should have turned ‘left’ to enter the Mayo complex in Jacksonville, but Chris immediately knew the device was erroneous when we found ourselves in the dark, in a suburban neighborhood; she instantly made an ’about face,’ crossed the intersection, and entered the complex — which, truthfully, was to the ‘left.’

Our accommodation was a delightful ‘Inn,’ and minutes later, we were registered into our 2nd floor deluxe-room (thanks to a comfortable wheelchair and a waiting elevator). It was already dark outside, so Chris immediately ordered dinner via room-service. That, plus what was left of the ’peach’ drink, was more than adequate.

The next morning Christine went out and secured breakfast and coffee (not nearly as good as our Keurig-Brewed-at-Home-Coffee), but I had an hour to sit outside on the room’s balcony and absorb some fresh air.

My appointment at 1 PM was with a Mayo neurologist, a Dr. Boylan. At 12:45, a van-limo pulled up in front of the Inn and whisked us off to Dr. Boylan’s office at the main hospital, just minutes away.

I had to wait briefly for Dr. Boylan while Chris found a Ladies Room, and I dozed off in the waiting room. A nurse came to fetch me and wheeled me down the hall, and Dr. Boylan and my wife arrived in the Exam Room at about the same time.

Here is part — well-edited — of the Mayo doctor’s report to Dr. Bernstein: “Mr. Mills . . . referred to me by Dr. Bernstein of Atlanta for evaluation of PLS . . . is an 82-year-old right-handed man . . . problem using his right hand, holding something as simple as a pen, let alone writing with it . . . slowly progressing, a tendency for his trunk to tilt to the right . . . year and 1/2 ago . . . the upper right extremity and right-hand problem . . . resulted in a series of falls, one resulted in a broken collar bone . . . another resulted several rib fractures . . . uses a single-point cane . . . manual wheelchair . . .

“No recognized sensory loss; pain not a significant component . . . consistent pseudobubular affect . . . symptoms essentially controlled . . . Problems processing information and retaining information . . . suggests executive dysfunction . . . reports nocturia, use of bedside urinal . . .”

He goes on to report that Robert had “undergone neurological evaluation . . . various specialists . . . Feb 2012 no motor denervative change . . . nerve condition finding suggestive of right median neuropathy in his right wrist . . . Aug 2011 bloodwork . . . sedimentation rate, etc., all normal . . . brain MRI June 2011 multilevel spondylosis, postsurgical changes . . . not clearly neutral . . . nor a neurological disorder. . .

“My impression is that this is a very complex set of symptoms . . . I agree with Dr. Bernstein that Mr. Mills does not have ALS, and I do agree that he does have a number of features symptomatic of PLS . . . right upper limb, posture, rigidity of right-hand and arm perhaps (note ‘perhaps’) more consistent with dystonia . . .

“I told Mr. Mills and his wife that primary neurodegenerative disorder seemed likely, associated cognitive, motor control issues, as prevalent in cases of PLS . . . could also be a combination of age-related factors or possibly a superimposed peripheral neuropathy mainly of sensory features . . . in other words, I just don’t know.

“I personally reviewed all film the Millses made available to me, especially the MRIs from July 2011, and discussed the above findings with my colleague, Dr. Wszolek, who specializes in dystonia and Parkinson disease . . .I offered the Millses a follow-up appointment with a newer, more recent MRI, as well as an appointment next week with Dr. Wszolek and me, but the wife said they could not afford to stay the extra days. . .

“For the present, they agreed to follow-up with Dr. Bernstein.”

Because we left after 4 PM, we had to pay ½ the additional nightly rate at the hotel, so upon paying the extra, exorbitant fee, we stopped at the Golden Coral, had a hearty dinner, and got home, after six hours and to the mother-in-law’s surprise, shortly before 1 AM Saturday morning.

I saw Dr. Bernstein a week or so later, after he had time to digest Dr. Boylan’s report, and he said to my wife, “The Mayo doctor is full of shit. I will go to my grave with the diagnoses that Bob has Primary Lateral Sclerosis!”

Somehow, I think Dr.Bernstein may be right. But then, what do I know?. . I just wish it would vanish as mysteriously as it appeared five years ago; I’m sick of it.



Robert A. Mills
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