Friday, July 17, 2020

Fatigue

Of all the factors contributing to my walking difficulties--loss of balance, loss of muscle tone and strength, loss of coordination---the biggest contributing factor by far is fatigue. Not the kind of fatigue my fellow surgery intern referred to when he responded, "Hell yeah I’m tired. I've been up for the last 36 hours straight!" when I asked if he was tired, attempting to pacify my concerns over my own fatigue issues. 

The kind of fatigue to which I am referring is paralyzing. It is a fatigue so oppressive that one finds oneself not only unwilling, but unable to move…for anything. It is a fatigue, that in my own description, feels as though one’s arms and legs are embedded in cement. On bad days it feels as though the cement is still wet, still unset. On the worst days, it feels as though the concrete has dried, encasing and pinning one’s body down. While lying in bed with the toilet less than 10 feet away, knowing that every attempt at moving closer to the toilet only pushes it further, one decides it is easier to make a mess of oneself  right where they are instead of attempting the futile task of making it to the toilet.

Fortunately, I only have at most one or two episodes of this kind of fatigue a year, generally announcing that a viral or bacterial infection of some sort is soon to follow. At this announcement I know to begin searching diligently for the source of the infection. Urinary tract infections or cellulitis are the most frequent offenders. The most recent episode occurred just a few weeks ago.  Only, unlike the usual occurrences of fatigue, this episode was different. The infection announced the arrival of the fatigue. 

During my nightly bedtime ritual on a Friday night few years ago, I noticed a mild uneasiness deep in my gut. I could not discern whether the rumbling I felt was aways off in the distance or an imminent attack. The inconclusiveness of my assessment led me to don prophylactically an adult diaper. Around midnight I awoke, though not feeling in immediate danger, I asked for a bucket. As soon as the bucket was placed next to my head, I began throwing up.

With the onset of puking came relaxing of some of my body’s tension with which I had been sleeping. It seemed as though my body’s little generals sensed the “at ease” and issued an "everybody out" order. This order of “reveille, charge” called the troops to action, as I began getting flanked around both ends by body fluids. This occurred a few more times throughout the night.

The following morning, despite my friend Kristi’s suggestion of calling an ambulance, I stubbornly attempted to get out of bed with the goal of taking a shower and cleaning myself of the previous night’s events. Before being able to get my second foot on the floor, I went down. I went down hard. After several futile attempts at getting up. I opted to lie there and rest on the cool hardwood bedroom floor, hoping a few more minutes of rest and relaxation would recharge my drained batteries.

When I awoke a few hours later, however, my hopes of waking with recharged batteries quickly vanished as I attempted unsuccessfully to go from a prone, flat on my stomach, position up to my hands and knees. My plan of moving from a hands and knees position to a fully upright position with the help of my bed cane was quickly foiled as I abruptly returned to a prone position on the floor. With help from Kristi, I drag myself across the floor, into my bathroom, and into my shower. I lay on the floor as the cool water from the shower sprayed me. Brown water with particulate matter and scattered chunks began floating around me on the tiled shower floor towards the drain.

Once the water on the floor became clear, or my hundred-gallon hot water heater began spraying only ice-cold water (I do not recall which), I turned off the shower and continued lying on the floor. After a few minutes, my friend returned to assist me. At that moment, I uttered words I had never spoken before, words I should have said hours earlier. 

"Call an ambulance please.”

Sunday, May 5, 2019

Scotch

(Irish brogue) Aye, what you doin, lad? You don’t shoot it.  You savor it “exclaimed the big burly Irish tow truck driver from Wisconsin as I downed the glass of scotch the bartender placed in front of me. Sputtering, and feeling as though a nuclear reaction in my chest was about to explode bits of me in all directions, I coughed out “Ya could a old me that sooner.”  Riotous laughter erupted from the belly of Matt, the irish tow truck driver from Wisconsin and all of his "clan" that sat around him at the bar.   

The previous evening, April 7, 2018, the ship I had boarded earlier that day, Royal Caribbean Cruise lines Adventures of the Sea, disembarked from San Juan Puerto Rico on a seven-day cruise around the southern Caribbean. For the second year in a row, I would be giving talks to the group, MS cruisers, on board the ship, sponsored by the non-profit organization, MS Bright Spots of Hope.

“You hold it in your hands, bring it up to your nose, and take a big sniff, giving your taste buds a little hint of the excitement coming their way." He instructed.  "then you take a little sip," he continued, "and swirl it around your tongue."  "If you do it just right," he continued, "you can taste butterscotch."

Earlier that day in the waters off the beach at Philipsburg St. Marten, I made the acquaintances of a few fellow passengers. Later that night, as I wheeled through the piano bar on the seventh deck of the ship, I heard my name being yelled behind me. Looking around, I saw my new friends sitting around a table in the elevated area of the bar by the pianobeckoning me to come join them for a few drinks. Two of the guys lifted me in my wheelchair up the one-step to get to the area of the piano. We sat around drinking, talking, drinking, and singing songs with the piano player that that no one really ever liked, yet somehow knew all the words.

As the night went by, unnoticed by me, slowly, people from our table started to peel away, turning in for the night. Before I knew it, I was the only person remaining at the table in the elevated area of the bar by the piano. With slight panic, I looked around searching for somebody, anybody I knew to help me get down from the bar. I could see no familiar faces. Fortunately, a few guys at the bar noticed my plight, and came to my rescue, lifting me off the elevated piano bar. As a show of gratitude, I popped a wheelie in my chair and rode around the floor.

Apparently, this scene did not go unnoticed as hearty laughter emanated in my direction. The loudest laughter came from the burly Irish truck driver from Wisconsin. "Buy ya a drink?" he offered. Graciously I accepted his offer. "Do ya like scotch?" He inquired. "Don't know, never had it." I replied. "Aye, I get ya the good stuff."

The bartender placed two warm glass of the "good stuff" in front of us. I looked at the Irishman inquisitively. "You're supposed to drink it at body temperature." We said "Cheers", and I proceeded to down the entire glass at once.

Once the laughter quieted, introductions were made to the rest of Matt's "clan". A few glasses of scotch later I finally mastered the art of drinking scotch and was able to taste butterscotch. Whether the taste of butterscotch was due to improvement in my scotch drinking technique, or due to the quantity of scotch I drank, is difficult to say.

I awoke the next morning at 1 PM with an enormous hunger. As I got into the elevator heading for lunch, a young couple in the elevator laughed and said, "Boy, you look like you had a rough night." To which I quipped, "I learned a hard lesson last night. Never learned to drink scotch with an Irishman." The couple burst into laughter. "It was YOU drinking with Matt last night!"

This became the first of my drinking adventures during the weeklong cruise through the southern Caribbean. However, this was by far the most memorable. Not only did I perfect the art of drinking scotch, I also learned to proceed with caution whenever I hear those words in an Irish brogue, “Buy ya a drink."

Sunday, January 14, 2018

Teresa and the Man in the Wheelchair

While leaving a physical training session one late morning in early December 2017, I crossed paths with the person whose appointment followed mine. Severely disabled, a man sat slouched over towards his right in a wheelchair, with legs extended and secured so as to not slip off the side of the leg rests.  He faced a window, his frail body motionless, his face speechless and expressionless with a blank distant stare.  I noticed a woman with him.  Maybe his mother, maybe his wife, sitting next to him on a bench.

Teresa, my assistant, walked over towards him and straightened his ruffled lower pant leg. No words were exchanged. The man remained motionless as though unaware. Only his eyes moved, shifting their gaze to Teresa. He gave her one blink. She smiled, and said, "you're welcome".

Watching this touching scene unfold struck me poignantly, giving me pause, and set my thoughts in motion. Here was this severely disabled middle-aged man, seemingly unaware of his surroundings and his surroundings seemingly unaware of him. With one simple act of kindness, his lights, which appeared to not be on flashed brightly when a stranger smoothed his pant leg. A brief moment of connection formed between Teresa and this man who is most likely used to being overlooked by the rest of the world.

While driving home from the gym, I continued thinking about the scene I had just witnessed. Suddenly, a feeling of horrified embarrassment struck me.   I had just done to this man in a wheelchair exactly what angers me most when I am the disabled man in the wheelchair. Shame enveloped me. All I had seen was a seemingly unaware severely disabled man. Teresa, on the other hand, saw beyond the visible, connecting with the man by extending a simple random act of kindness.

So often we focus on the obvious, the superficial, the exterior. We don't look beyond. Our only history may be this one snapshot in another's life. We forget that our lives are more than random snapshots in time. Rather, they are infinite snapshots sewn together creating a feature length movie.

By looking beyond the obvious, beyond the surface, we will find the story of a life. We will find the person is somebody's son or daughter, maybe somebody's brother or sister. Maybe they are somebody's husband or wife, somebody's mother or father. Maybe they once were a star athlete or musician. Maybe they once were a fireman, policeman, postal worker, engineer, chef, lawyer, or doctor. The point being, they have a life beyond and are more than just their disability.

Friends, haven’t we all been there at one time or another? Haven’t we all at times felt like this man, alone, overlooked, unseen and unwanted? I offer a challenge to you. Whenever you see someone appearing emotionally lost, take a chance. Step outside your box. Go beyond your comfort zone.  Reach out to them. Extend a simple random act of kindness. You just might make someone’s day. You might surprisingly find out you made your day as well.

.


Sunday, August 13, 2017

MS Focus magazine summer 2017 article

Mobility Devices Provide Freedom
Rudy Yanuck

"I'm too young." Or "It will make me look disabled." Or "I'm not THAT disabled." These are some of the excuses I have given when various assistive mobility devices (AMDs) have been offered, or suggested to me. Do any of these excuses sound familiar? If so, then you and I have something in common.

Multiple sclerosis has affected me nearly my entire life even though my own diagnosis didn’t come until the age of 27. My father and three of my aunts all had MS.  I was only 12 when my father began using an electric scooter to get around outside of the house. His model was cumbersome, heavy, and hard to assemble.  I must admit it was a hassle for my mother and me to unload the scooter from the car, assemble, then disassemble and reload it every time we went somewhere. Not for my father though, who would wait in the front seat.

Fortunately, technology has made great strides since then for those of us with MS. Over the last 23 years, I have experimented with many AMDs. I found some, such as walkers and three or four pronged canes, actually made me unstable, hindering my mobility. While others, such as Lofstrand crutches (forearm crutches) and ankle foot orthotics (AFOs) help me tremendously with issues of balance and stability as, well as foot drop and ankle rolling.

As a cocky, young, physician, I first resisted using a scooter.  However, I soon found traversing the long hallways at the hospital far too daunting. I quickly changed my tune and happily accepted the first of many scooters to come. With the newer models being much easier to manage, I promised myself I would not allow the scooter to become a burden for my family, as it had been for me during my teen years. I decided to make loading and unloading the scooter my responsibility, for as long as I am able.

At that point, I was still walking on my own my home and in the office, but I found that the scooter reintroduced me to many things I had taken for granted in my pre-MS life. I rediscovered activities that I had not even realized I was avoiding. I started going shopping, to the mall, to the park, and on "walks" with my family again.  I became part of their lives once more.

The scooter was, and still is, very freeing. Now days, the scooter is my main form of transportation around my home and neighborhood. I frequently, if not daily, scooter to grocery stores, restaurants, the library, and, in the summer, to the pool to swim two or three times a day. Over the years, I generally have had two or three of my children with me, standing, sitting, or hanging off the scooter as I drove by. I became known in the neighborhood as the scooter dad with those happy kids. Their riding positions became a rite of passage. Starting as infants, they sat on my lap. As toddlers, they stood or sat in front of me. Finally, by the age of six or seven, they stood behind me holding onto the seatback for dear life.

Scooters are not the only AMDs to have a tremendous impact on helping me remain independent.  A little over 10 years ago while driving, my oldest daughter caught me grabbing the hem of my shorts to lift my leg, moving my foot from the accelerator to the break pedal. The look of horror on her face informed me it was time to make a serious change. I had a digital accelerator ring (DAR) hand control system installed in my car. The DAR has been a godsend and has enabled me to continue driving, keeping me from being housebound and maintaining my independence.

I can't tell you the number of new friends I have made just by cruising around on my scooter, or from people asking me about the ring on top of my steering wheel. People generally want you to succeed and love engaging in conversation. As a matter of fact, I recently went on a Caribbean cruise with my scooter and became somewhat of a rock star by the end of the trip, I’m told.

However, a word of advice to new scooter warriors: never leave home without a fully charged battery, charger, and cell phone. You don't want to run out of juice or those new friends of yours will be pushing you and your scooter home.


Rudy would love to hear about the trials and triumphs of your MS journey to share in his talks and blog. He believes, together, we inspire and empower each other. To have Rudy speak at your local chapter, business, or organization contact him via email at rryanuck@gmail.com or his blog www.rudysmsblog.blogspot.com for booking information.






Sunday, July 2, 2017

2017 MS Evening of Hope

                                                                                                  


July 2, 2017


Dear Friends and Family,

The 4th annual “MS Evening of Hope” will be on  July 26, 2017, presented by MS Bright Spots of Hope.  Using the same format as previous years, this program will reduce isolation and the obstacle of poverty, create social support for those with MS and their support partners, and renew spirits and sense of well being. Over 140 persons are expected.  It will be held at Von Gottard Conference Center, Mercy St. Louis campus, 621 S. New Ballas Rd, St. Louis, MO 63141.

The evening will begin with a reception with vendors/exhibitors followed by dinner and an inspirational program including patient speakers ( This will be my fourth time giving the keynote speech. ) and attendees sharing stories of hope. The program includes a beautiful quilt presentation and live music. The event was created by Michelle Keating RN, MSCN with her Dream team committee.

Please consider sponsorship for the event?  The sponsorship donation should be to MS Bright Spots of Hope (tax ID number is 81-1794680).  On behalf of those whose lives are affected by MS, thank you for your support.  Please mail your donation to MS Evening of Hope, 12004 Jacobson Ct, Bridgeton, MO  63044


Thank Your Support.

Rudy Yanuck MD

Contact
Phone: 314-443-8945





                                                                 Sponsorship Levels
                                               Presenting Sponsor $7500
    Receives recognition as a Presenting Sponsor in the program and all media releases
  • Receives recognition at the Event with display of Company name and presentation of quilt to Company/Individual representative

“Connector to Hope” Sponsor $2500
  • Receives recognition as a “Connector to Hope” Sponsor in the program and all media releases
  • Receives recognition at the Event with display of Company name, opportunity to display or distribute promotional and/or educational materials and presentation of “hope” gift to Company representative

Vendor/Exhibit Sponsor $1000
  • Receives recognition as a Vendor Sponsor in the program and all media releases
  • Receives recognition at the Event with display of Company name in table tent
  • Opportunity to display or distribute promotional and/or educational materials


Table Sponsor $500
  • Receives recognition as a Table Sponsor in the program and all media releases
  • Receives recognition at the Event with display of Company name in table tent

Half Table Sponsor $250
  • Receives recognition as a Half Table Sponsor in the program and all media releases
  • Receives recognition at the Event with display of Company name in table tent


“In honor of/In memory of your individual MS Connection” Sponsor $25
  • Receives recognition as an individual MS Connection Sponsor in the program, in honor of/in memory of…

Kindest regards,

Rudy

Contact
Phone: 314-443-8945