Having Fun

Just because you're disabled doesn't mean you can't have fun.

“Hit it!” I yelled.  A split second later, the boat engine revved, yanking me and my partially submerged water ski from its resting position, tip of the ski extending from the water towards the sky, to an upright, horizontal position.  I began gliding and cutting back and forth atop the wake of water created by the speeding boat.

I’ve been attending the annual disabled water ski event at Creve Coeur Lake for well over a decade. I look forward to these outings all year. It is a rare chance for me to feel ”normal”, or at least as close to normal as I remember normal feeling, if at least only for a few hours. The endorphin rush I get as I glide, balance, steer, and even sometimes jump across the water, wind in my face, water spraying over me, is much like the feelings I used to get while playing competitive sports, snow skiing, or performing music.  Even the “wipeouts”, though sometimes mildly uncomfortable, can be exhilarating.

This year’s event on Saturday, August 2, 2014, was my best ski outing to date.  I jumped the wake several times.  One time, I caught big air, but couldn’t stick the landing, resulting in a tail over tip somersault with a huge burst of water spray.  The next time I caught big air, I stuck the landing!  Only this time, the hard “thunk” of the ski returning to the water knocked my grip on the rope’s handle loose, and I coasted to a halt, then sank.

To individuals with a disability, water is the great equalizer.  Its buoyancy, which counterbalances gravity, diminishes its effects, and allows me to move my extremities more easily. In water, I feel free from my MS riddled prison of a body.   I find myself able to walk, run, and jump. Activities I have not been able to do on land for almost 20 years. Although other water activities provide an opportunity for this feeling of freedom, they are nowhere near as fun as riding a ski atop the water at 20-25 mph.

New skiers and volunteers attend dry land training the day before the ski event.  Here, volunteers are trained, and athletes are water tested to ensure they can keep from drowning.  Basically, making sure they can at least turn their face towards the sky, keeping their mouth out of the water.  They are also taught to ski.  While the ‘newbie’s’ are oriented and trained, a few of us veteran skiers get the opportunity for more time on the water skiing by serving as “crash test dummies” for the new in-boat volunteers.  

My friend and fellow MS survivor, Pat, and her husband, Phil, drove 2 hours from Columbia, MO, to participate in waterskiing for the first time.  While I was on the lake skiing, being a “dummy”, they were on the beach getting trained and oriented.  Later that evening, Pat told Phil, in a glum somewhat defeated voice, reminiscent of Winnie-the-pooh’s friend Eeyore, “I don't think I’m going to ski tomorrow.”

The next day, after seeing the huge smiles on the faces of the skiers coming back from the water, she decided, with some trepidation, to ski.  After taking four laps around the lake, she returned to shore, hair still dry, with the biggest smile of anyone there, and exclaimed, “This is the best run event for the disabled I've ever been to. It's like walking into a big warm fuzzy hug.”

Fountain of Youth

“Rudy! You found it!  You found it!  It does exist!” exclaimed Henry McFarland as he burst through the door, entering the examination room that my wife and I were in at the Clinical Center at the National Institutes of Health.  “Tell me where it is!  You gotta share!  You found it!  You gotta tell me where it is!”  My wife and I exchanged quizzical glances.  THIS is Dr. Henry McFarland?  THIS is NIH’s expert and lead multiple sclerosis researcher? “Tell me where it is! You found the Fountain of Youth!”  He had not lost his mind after all.  “You must be thinking of my father,’” I replied with a grin of relief.  Roughly twenty years earlier, my dad, Rudolph Raymond Yanuck, Jr., and two of his sisters with MS had traveled to NIH and saw Dr. McFarland.  As an icebreaker, Dr. McFarland’s joke was to put me at ease.  My name is Rudolph Raymond Yanuck, III.

It was Monday, October 24, 1994.  Two days earlier I had seen Admiral Kurtzke who had officially given me my “death sentence,” multiple sclerosis.  By “death sentence,” I don’t mean I’m going to die OF it.  I’m going to die WITH it.  Multiple sclerosis will not itself make my life any shorter, it just might make it miserable.  But to quote Richard Cohen, husband of Meredith Viera, formerly of “The Today Show”, MS survivor, and former CBS producer, “a miserable life is better than no life at all.”

The appointment went much like the one with Dr. Kurtzke.  Dr. McFarland reviewed my medical history, test results, and performed a neurologic examination, only this time there was no audience, lecturing, or “pimping” of medical students, an acronym for “put in my place”.  There was only me, my wife, and Dr. McFarland.  Dr. McFarland’s treatment advice differed from Dr. Kurtzke’s.

Interferon beta-1b, also known as Betaseron, had recently been approved by the FDA for the treatment of multiple sclerosis as the first disease modifying medication, self administered by subcutaneous injections every other day.  It was not a cure, but slowed disease progression, something not available to previous generations of MS patients.  Dr. Kurtzke felt that since my disease was not yet disabling, I should wait until that time when disability emerges to begin Betaseron.  Advice I liked.  Dr. McFarland was of a different opinion.  His advice was to begin betaseron “yesterday”- a prospect I did not relish ( I did not like the idea of every other day injections - yes, even doctors can be afraid of needles.  So we made a deal.  If a gadolinium enhanced MRI showed active disease, I would start treatment.  If active disease was not seen, I would postpone treatment as Dr. Kurtzke recommended.

A few days later, for the second time of many, I lay supine on the MRI table with a cage placed over my head looking like a hockey goalie or baseball catcher.  The table slid into the scanner,  positioning my head and body in the narrow opening.  “!-!-!” went the scanner, then silence.  Suddenly a loud “gnweuew”, followed by “dupt-dupt-dupt-dupt-dupt-dupt, blop-blop-blop -blop-blop-blop-blop, doof-doof-doof -doof-doof-doof-doof, rat-tat-tat-tat tat-tat-tat.”  The cacophony would have been deafening without the headphones on my ears.  Then silence.  A few seconds later the second cacophonic movement began.

“Active disease seen.”  Let the misery begin.

It's a Duck

“Right this way Lieutenant” said the Petty Officer, directing my wife and I through a darkened doorway.  Across the dark room, I saw a thin bright light shining between floor to ceiling curtains.  Our guide ushered us towards the sliver of light which grew in width and intensity as we walked nearer to it.  I was able to see three empty chairs through the curtains, one chair facing two.  Once through the curtains, I realized the darkened room was actually the side stage area of the Naval Hospital’s auditorium.  We were on the stage!  Looking out into the audience I saw approximately 50 of the seats occupied by eager, young faced, uniformed interns and residents, some of whom I knew personally.  Instantly, what was about to take place became apparent.  It was October 22, 1994 at the National Naval Medical Center in Bethesda, MD.  For what I had thought I was sent to Bethesda, an expert second opinion by Dr. John Kurtzke, was actually the monthly neurology lecture given to the Naval Hospitals’ house staff by Admiral Kutzke.  I was the subject of the day.

Dr. Kurtzke, a pioneering neuro epidemiologist, who is best known for his creation of the Expanded Disability Status Scale in 1983, still universally utilized by the medical community, was a professor of neurology at Georgetown University and  Rear Admiral in the US Naval Reserves.  His “one weekend a month” was spent at the Naval Hospital in Bethesda, lecturing residents and consulting on difficult cases.  Was I a difficult case?  Likely not.  But as Phil Catron, my neurologist back at the San Diego Naval Medical Center said, “Let’s let the expert make the call”.

Earlier that week, my wife, who had just entered the third trimester of a twin pregnancy, and I boarded a military MedEvac flight, leaving from Marine Corps Air Station Miramar in San Diego, CA.  The Airforce C-17 MedEvac plane had been configured to transport gurneyed, as well as rear facing seated patients and passengers.  The plane zig-zagged across the western half of the country from air base to air base for the next twelve hours, picking up and dropping off patients and passengers along the way.  Eleven take offs and landings in total.  Finally, exhausted from hours of sitting and what seemed like flying thousands of miles, the cockpit announced that we were landing at our final destination for the evening.  I looked out my window and caught my first ever glimpse of breath taking landmarks that up till then I had only heard about and seen pictures of in textbooks, and thought would likely never see again.  Just outside my window, so close it felt as though I could touch it, was the illuminated Gateway Arch standing majestically alongside the “Mighty Mississippi” River.  Moments later our plane touched down at Scott Air Force Base.

Our flight to Bethesda, we were informed was to takeoff in two days.  My wife and I spent most of our wait enjoying our “posh” accommodations which consisted of a hospital room with two hospital beds and a bathroom.  We did, however, wander the grounds and catch a movie at the post cinema.  The following morning, we boarded another C-17 MedEvac plane and continued our trip to Andrews Air Force Base in Maryland, only this time we zig-zagged across the eastern half of the country.  After landing and a short military bus ride, I reported to the Bethesda Naval Hospital for “duty”.

The next morning, Admiral Kurtzke, in dress blue uniform, sitting opposite my wife and me, also in dress blues, on stage, and in front of watchful eyes eager to soak in the knowledge, expertise, and wisdom that Dr. Kurtze possessed, reviewed my medical history, test results, and performed a neurologic exam on me.  Periodically he lectured to and asked questions, a practice commonly known in the world of medical education as “pimping”, derived from “put in my place”, of the audience.  At the end of the “pimp” session, Dr. Kurtzke turned his attention back to my wife and me.  In his gruff but comforting voice he said “Well, I tell ya, it’s looking like a duck.  It’s waddling like a duck.  And I’ll be, if it ain’t quackin’ like a duck.  Dr. Yanuck, its a duck.  You have multiple sclerosis.”

Internship 2

The month of May, I spent assigned to the pediatric surgery service at Kaiser Permanente Hospital in San Diego.  The staff pediatric surgeon, Dr JD, a former pediatric surgeon at the Naval Hospital, accepted surgery residents and interns to mentor.  This month gave me the opportunity to get to know Dr CY, the senior resident also assigned to the service.

As an unlicensed physician, as most interns are, I had a very limited role in actual patient care at This hospital for liability reasons.   I primarily observed, not being allowed to write notes and orders in patient charts, cover inpatient call, not even allowed to “scrub in” on surgeries.  The relaxed pace was sometimes boring but a welcome reprieve from the frenetic pace of the rest of the year.   

Preoccupation over my upcoming MRI towards the end of the month blurred my memory of that rotation.   One event does, however, stand out.  I was informed by CY of a little boy that had had a percutaneous endoscopic gastrostomy (PEG) tube for feeding because of a congenital abnormality.  He was having difficulty breathing due to indigestion and bloating.  Later that evening, the father called me with the same complaints.  As instructed, I told him to “burp” the tube and go to the emergency room if his difficulties continue.  I went to bed.  Early the next morning, around three am, the father called me back to inform me his son was dead.  I froze in panic.  “My God, what do I say?  What do I do?” I thought.  I had never been in a situation like this.  Previously I had been a part of a team in these kind of situations.  The more experienced attending physicians handled this stuff and I stayed in the background with the rest of the surgical entourage.  This time I was alone having to talk with an acutely grieving parent. I expressed my condolences for his loss.  I hung up the phone with the unsettling feeling that I handled it all terribly wrong.  Eight months later I would learn that there was nothing I could have said to ease his pain, but to have said nothing would have been deplorable.

The morning of Thursday, May 26 I went to the radiology clinic for my MRI.  The machine looked like all the other CT scanners and MRI scanners I had seen previously.  A nut  and bolt assembly with the bolt being the patient lying in a narrow trough-like table, and the nut being the large square machine that housed the rotating magnets.  But this time, I was the patient lying on the table whose head the unseen magnets would rotate around.  I lay supine on the table.  A cage was placed over my head.  I imagined I looked like a hockey goalie or baseball catcher.  The table slid into the scanner,  automatically positioning my head in the narrow opening.  “!-!-!” went the scanner, then silence.  Suddenly a loud “gnweuew”, followed by “dupt-dupt-dupt-dupt-dupt-dupt-dupt-dupt, blop-blop-blop-blop-blop-blop-blop-blop, doof-doof-doof-doof-doof-doof-doof-doof, rat-tat-tat-tat tat-tat-tat-tat.  The cacophony would have been deafening had it not been for the headphones placed over my ears.  Then silence.  A few seconds later the second cacophonic movement began just like the first.

The following afternoon I called the radiology department to get the results.  I spoke to the neuroradiology resident who was reluctant to discuss the preliminary results.  Radiologists generally don’t discuss results with patients, only doctors.  Dilemma, I was both.  He nervously stressed the results were only preliminary, not yet reviewed by his attending radiologist, not yet finalized.  With a shaky voice, he then delivered his preliminary findings which were word for word of the eventual finalized report, not out of nervousness and insecurity in his interpretation, but out of concern for what his interpretation meant to the person on the other end of the phone line, me.  I listened, hung up the phone, and steadily, with heart pounding, throat closing, and eyes welling, walked to the men’s room.  Once the latch clicked behind me, I collapsed to the floor against the corner, in a heap of wails and sobs.  I wept like I never wept before, and only thrice since.

Internship

“Lieutenant, tomorrow at O-800 you WILL report to staff sick call.  You WILL obtain your medical record and you WILL report to the ophthalmology clinic.  You have an O-830 appointment with Commander Edwards, the neuro-ophthalmologist.  You WILL receive an MRI.” Captain S, Chief of the Department of Urology, sternly ordered me.  Immediately, I stiffened in fear and thought “Oh shit”.  I wasn’t concerned about the ophthalmology appointment.  I had been evaluated by CDR Edwards two months previously as part of my flight surgery application.  I had been selected and would not have had the orders in hand to report for flight surgery training that summer had I had not passed the eye exam.  It was the MRI I feared.  That test had the potential to discover, uncover, reveal, ruin… and save me.  During my surgery Internship at the San Diego Naval Hospital, I was generally referred to as doctor.  So when a captain referred to me as lieutenant, I knew the only reply was “Yes Sir”.

From July 1, 1993 to July 1, 1994 I did a basic surgery internship, the toughest year of my life and the one of which I am most proud, at the Naval Hospital in San Diego, preparing me to repay the Navy four years of active duty service for the four year scholarship to medical school they had given me.  Early in July 1993 on my trauma service rotation, I began having some difficulties with touch sensation.  Feeling femoral artery pulses in order to phlebotomize the vessel to obtain an arterial blood gas measurement was difficult for me, sometimes impossible.  It became the running joke of Dr. G, one of the staff surgeons.  At times I felt the tears wanting to erupt but I refused to show my true emotions, laughing along with him.

As the year progressed, I started noticing other difficulties.  I had more trouble than most with fine motor tasks.  As the rest of my team would glide rapidly down the staircases, their feet seemingly not even making contact, I would be left slogging behind.  On call nights when I stayed overnight in the hospital and was awakened and summoned to assess a patient, I found it difficult to begin the long trek from my call room to the patient wards, spending the first 20 yards or so bouncing of the walls for balance.  One day I asked Dr. P, a fellow surgery intern if he was tired.  He emphatically replied “SHIT YEAH I’M TIRED!  I’VE BEEN UP FOR THE LAST 36 HOURS!”  So I tried to convince myself that it was just a hazard of the job.  But deep down I knew there was something more.

I had been a surgical intern on the urology service for the month of April 1994.  The interns rotated Fridays,  performing vasectomies and circumcisions with Captain S, the department chairman.  The previous Friday was my turn.  Apparently he had noticed something in my surgical technique that caused him enough concern to lead to our Monday morning meeting in his office, and warrant a mandatory ophthalmologic evaluation.  The reasons for his concern would not be made clear to me until a few months later.

At the appointment,  CDR E performed essentially the same exam he had performed two months previously.  This time he asked more directed questions focusing on my peripheral vision.  He was looking for signs of bitemporal hemianopsia, the classic symptoms of a pituitary adenoma, a growth in the pituitary gland at the central base of the brain that compresses the optic nerves affecting peripheral vision.    Untreated it could cause blindness, endocrine disturbances, and potentially death.  My responses to all of his questions where “No”.  “Your exam is unchanged from the last time I examined you.  I don’t see a justification for an MRI.”  “Whew.” I thought, finally releasing the breath I was holding.  “Well”, he said, “actually I do. If the captain wants an MRI, the captain will get an MRI.”

“Fuck!”       

Introduction

My name is Rudy Yanuck.  I am a 48-year-old retired physician, a US navy veteran, father of six, and a 20 year survivor of multiple sclerosis.  Through this blog, I hope to share my journey walking hand-in-hand with MS by sharing my trials and triumphs, tragedies and victories.  Hopefully my story will inspire and give hope not only to those suffering with multiple sclerosis, but also those suffering any chronic disease, such as Lupus, Parkinson's, Alzheimer's, mental illness, even those suffering from chronic health.  I know personally that reading other people’s accounts of their difficulties and how they were able to cope with their illness and continue living life fully have been very inspirational to me- Michael J Fox and Richard Cohen quickly come to mind.  Maybe you will find comfort and support in the words I write and the community I hope to build.