NSA Talk 7/17

National Speakers Association



https://www.youtube.com/watch?v=1p-w-wJX6uY&t=366s

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.

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

email: rryanuck@gmail.com

Blog: rudysmsblog.blogspot.com

                                                                 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

email: rryanuck@gmail.com

Blog: rudysmsblog.blogspot.com

 

I FOUND IT!

“I found it! I found my bubble! My bubble is back! I’M BACK!”   These words resounded in my head as I scootered through the Promenade on the fifth deck of  the Royal Caribbean Cruise line’s 3rd largest ship, the Oasis of the Seas.  I was invited to speak to the MS cruisers on the ship by the nonprofit organization MS Bright Spots of Hope.  Together, we would spend 7 nights in the Caribbean having ports of call in the Bahamas, St Thomas, and St Maarten before returning to Port Canaveral, Florida.

My "bubble" or "joy bubble", is how my mom and her two sisters described me as a little boy - a term they used to depict the pure effervescent  joy and happiness I showed for everything.  However, as I grew out of childhood and my teen years, my "bubble" began to shrink.  With the accumulating responsibilities and stresses of adulthood, it kept getting smaller and smaller until it felt lost forever. Thankfully, on the cruise, I discovered I was wrong. It was still there inside of me, waiting to be nurtured and given room to grow.

Upon boarding the ship the afternoon of March 5, 2017, I immediately felt the stress and worries from the outside world begin to melt away. The weight on my shoulders gifted me by life began to lighten. As I scootered further into the ship a few of the veteran MS cruisers and a couple of freshmen MS cruisers greeted me. I soon began to experience myself among comrades in arms, among old friends I had never met. I felt at home.

In addition to fantastic ports of call, we had exciting creative arts activities sponsored by MS Bright Spots of Hope: ceramic tile decorating, watercolor painting, and bracelet making.  Also, talks were given by Brandi Johns, Mary Ellen Ziliak and her husband Roger, Dennis Tooley, and myself at sessions throughout the week.  And finally, we had the most memorable closing event, “MS Evening of Hope” featuring myself as one of the speakers and sponsored by Bright Spots.  I was also awed by Dennis who gave us an excellent lesson on how to handle, with grace and acceptance, the obstacles and knuckleballs MS presents.  His unexpected temporarily loss of vision did not keep him from giving his presentation.  It was truly humbling and unbelievable.

So many moments and events of the cruise were truly memorable, like  the Tuesday night Hoedown costume party where those of us in scooters and wheelchairs learned line dancing.

One particular incident, however, stands out for me.  While sitting outside a restaurant, on the Promenade deck, sharing  MS and the military horror sagas with another military Veteran cruiser, an attractive blonde cruiser, whom I had noticed on several occasions earlier in the week, walked by the table at which we were sitting.  She turned around, walked over to our table, and sat down.  She told me how much she enjoyed my previous night's talk at the MS Evening of Hope.  She then began to share with me a few of the difficulties and pains that multiple sclerosis has brought into her life.  She shared with me the feelings of isolation, loneliness, aloneness, and abandonment she deals with thanks to multiple sclerosis.  She talked about how her friends slowly began distancing themselves from her.  She shared about the social activities she used to attend, to which she no longer gets invited.  As she shared. a tear began slowly sliding down her left cheek.  Soon it was joined by another, and another, and another, until tears were freely, silently, flowing down both cheeks.  I felt her pain. I remembered my own similar experiences early on in my journey with MS.  I shared with her.  I told her the one good thing to come from all of this is that one really gets to know who is a true friend.   Who will stick by.  She then echoed thoughts that had been on my mind about the cruise during the past week.  She felt grateful for the cruise because It let her know she was not alone.  She was not a “freak”.  Thanks to the this cruise, she felt part of a family.

Nearly a month after the cruise, one night while brushing my teeth, I had a realization that stopped me abruptly, and made me sit back and really think. What struck me for the first time was I had probably been the most physically disabled person in our group of cruisers, likely, the most physically disabled person on the entire ship. Yet, not once during the cruise did I think about, or even feel my disabilities. I felt like I could, and did, do anything and everything I wanted. For that entire week I was just "Rudy", and not the "disabled guy in a red scooter". I felt completely at ease with my surroundings and my body, not once feeling the least bit disabled. I felt at home, part of a family.

Friends, that sentiment explains why this cruise activity is so important, so critical, for the well-being and vitality of us prisoners of multiple sclerosis.  I rolled up onto the Oasis of the Seas an individual with multiple sclerosis.  Quickly, I found myself part of a community.  By the time I disembarked the ship on March 12, 2017, I felt part of a close knit family.  I discovered my bubble had not disappeared.  It still was within me, only dormant, waiting for the opportunity to flourish again.  I found it!

If I were to sum up the cruise in one word, I would have to quote Barney Stinson, character on the CBS romantic comedy sitcom How I Met Your Mother (google it),  “It was LEGEN….. wait for it….DARY.  LEGENDARY!”

My speech from the 2016 MS Evening of Hope.

Good evening

Who here is angry at multiple sclerosis for what it has taken away from you? Who here is angry at multiple sclerosis for what it has taken away from your partner? I sure am.   Multiple sclerosis has taken things from me practically my whole life. My father had multiple sclerosis as well as three of my aunts.  I’d like to share with you a few of the ways multiple sclerosis impacted and is still impacting my life.

For those of you who don't know me, or don't remember, my name is Rudy Yanuck. I am a 49-year-old retired pathologist, the 2010 Gateway Area Chapter’s Father of the Year, a U.S. Navy veteran, and a 22 year survivor of multiple sclerosis.  

I am angry at multiple sclerosis for taking away my destiny, My dream of becoming an orthopedic surgeon. I am angry at multiple sclerosis for taking away my ability to run, then gradually over time, my ability to walk, and my balance. I am angry at multiple sclerosis for forcing me into early disability retirement at age 45, sooner than I had anticipated.

 I am angry at multiple sclerosis for taking away my ability to do the common household tasks and minor household repairs I used to do, such as cutting the grass, vacuuming, shoveling snow, and even opening string cheese packets.  Pretty much the only things that multiple sclerosis has not taken from me are my kids and my hair.

   

Who here is grateful for multiple sclerosis? I know you're saying grateful for multiple sclerosis? How can anyone be grateful for such a debilitating disease? Being grateful is having hope, you know, the thing with feathers.

I am grateful for multiple sclerosis for the gifts multiple sclerosis has given me, aside from the obvious, great parking and never standing in line at amusement parks.

I am grateful for multiple sclerosis that it’s just multiple sclerosis. This chronic disease, as debilitating as it can be at times, will not take my life, though it can make it miserable as hell.  To quote Richard Cohen, CBS producer, husband of Meredith Vieira formerly of the View and the Today show,  and fellow MS survivor, ”A troubled life is better than no life at all.”

I am grateful that multiple sclerosis took away my chosen career, my destiny. MS has given me the gift of time, time to be at home with my family. If it weren’t for MS, I would have been a slave to the hospital and my job.

Thanks to multiple sclerosis, I have spent every night in my own bed since the summer of 1994. As a result, I am a proud father, living the dream that most fathers, most parents, wish they could live. I am a full time at home dad getting to spend 24 hours a day, seven days a week raising my five children.

I am grateful to multiple sclerosis for the family, friends, and the multitude of strangers that have offered help when I do one of my frequent “gravity checks”.

I am grateful to have had a father with multiple sclerosis who showed me that life does not end with the diagnosis.  One can have a fruitful, joyous, long life in spite of multiple sclerosis.

This is by no means a complete list.

My friends, Nothing is ever all good or all bad. Even with multiple sclerosis, one has the ability to find bright spots, hope, things for which to be thankful and grateful.

I challenge you. Tonight or tomorrow or sometime this week, write a list. Actually, write two lists. For the first list, write down what you are angry at multiple sclerosis for what it has taken from you. For the second list, write down what you are grateful for thanks to multiple sclerosis.  Email me your grateful list if you wish. I will use these lists (anonymously of course) in my blog to show others that even with MS one can be grateful and find hope.

People, let’s face it. Multiple sclerosis has given each of us a heaping pile of steaming… lemons. To borrow a saying from Joe Salacki, fellow Gateway Area Chapter member and MS survivor, “it is what it is. It becomes what you make of it”. Friends, let’s take those lemons and make something better than lemonade. Let’s make chocolate milkshakes. Keep hope alive.

Readers I issue the same challenge to you as I did to the Evening of Hope. Write two lists. Send me your grateful list if you wish and I will post them.

rryanuck@gmail.com 

Having Fun repost

June 29 and 30th was Summer Splash 2016. I look forward to Summer Splash all year long.  In honor of this event I am reposting Having Fun. Thank you Missouri Disabled Water Ski Association and Vito Lucido for a fabulous time.

“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.”

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