Venting

One of the upsides to aging is the opportunity to observe how this crazy world changes.  I find the gradual acceptance of marijuana fascinating.  Sunday night, I eagerly watched Dr. Sanjay Gupta’s CNN program “Weed”.  At the center of the story is a Colorado family dealing with one of their twin daughters suffering from a severe seizure disorder. Some additional reading brought to light that the little girl seizures stem from a mutation in the SCN1A gene.  My daughter’s seizures are caused by the same mutation.

 

Dr. Gupta’s report goes on to illustrate how the parents, with no other options, tried medical marijuana with miraculous results.  300 seizures a week were reduced to one seizure every seven days.  There are no side-effects. The little girl is gaining ground on every level. It is a tremendous story that everyone should know.

 

But I can’t shake the stupefying irony to all this. I keep thinking that all the hell that Megan as endured, all the nightmares Betsy and I have shared, might have been avoided if we had been just a bit more laid back. Rather than relying so heavily on the best possible medical care and devoting a large part of our lives to searching for answers, we might have been further ahead by establishing a good connection with the neighborhood pot dealer and teaching Megan how to do bong hits.

Michigan Mike

As a kid, most of my exposure to my father and his family involved weekend stays at my grandparents’ home. Whenever we made those trips during football season, our group activities always centered around listening to the Buckeye games on Saturday.

 

My grandmother was the one with the biggest heart in that house that sat back off Pierce Avenue in North Canton.   She was constantly fussing over me and my little brother. We never missed all the attention we were used to with Mom whenever we were with Grandma Holl.

 

But on those fall Saturday afternoons, Grandma always became a bit distracted once the Philco radio got snapped on.  Greg and I learned very early that Grandma was crazy for Ohio State football.  Grandpa, Dad and Uncle Phil were huge fans but Grandma lived and died with the Buckeyes. Once, every game, Grandpa would offer some sort of explanation for his wife’s behavior by telling us, “not only does your Grandma love football, but she understands football!”

 

Grandma or Coach Woody Hayes lit the spark sometime early but late in 1969 I began to feel an intense dislike for anything colored maize and blue.  Over the next years that animosity only seemed to grow deeper and spread wider as each season Ohio State vs. Michigan always ended up as the most important game. By the end of the 70’s, it had gotten so bad there was nothing pleasant I could say about anything to do with ‘that state up north’.

 

Grandma passed.  Then so did Coach Hayes.  My wife’s best friend moved to Lansing and we had to make a couple of trips up there.  All the green and white in that part of the state kept my mind off the fact that we were behind enemy lines.  You could buy anything at Meijer’s Thrifty Acres. Going up and coming back I always took the long way around Ann Arbor.

 

There was one remaining CAREBIKE in the shop. A mom near Detroit began a calling to see if the bike was right for her son and their family. We were talking back and forth, moving toward completing the sale, when she added that her son saw doctors and therapists at the U of M medical center.  An instinctive shudder went through me when I heard those words.  I don’t think Mom detected any change in my voice or manner.

 

I loaded the CAREBIKE in the back of my van and headed up north to make the delivery.  Crossing the northeast border of Ohio, I noticed the interstate signs took on an odd shape. Near Detroit, exit signs spelled out ‘Eight Mile Road’, ‘Six Mile Road’ and I chuckled and wondered who was in charge with coming up with such clever street names.

 

I got to the house and backed the van in the driveway.  Dad was in my rearview mirror directing me up the drive all decked out in his Wolverine sweater. I got out of the van and introduced myself never once looking directly at the sweater.   

 

I opened the back of the van and rolled the CAREBIKE out.  Mom and Dad were in the garage tending to their son Michael. I watched as they started into their long practiced routine of getting him ready for the weather.  Betsy and I have a very similar type of cooperative, working in unison, thing that developed in caring of Megan.  It looks and feels like some kind of dance. Right away I felt connected to these people.

 

They live in a perfect setting for CAREBIKE.  The driveway is directly level with the street and the street has no crown in the center.  It is nice and perfectly flat; easy pedaling. Mom and Dad each took Mike for a short spin out the drive and down into the neighborhood and back.  I’m out there with them checking them out on the bike.  Training came as I either jogged along side or, unable to keep up, hollered out instructions between large gulps of air.

 

Inside, where it was warm, I immediately felt right at home in a very pleasant house, accented by scattered pieces of the required medical equipment. We talked some more about the bike.  We talked even more about life and our similar trials. So much of what Betsy and I went through in raising Megan made us feel like we were all by ourselves.  It truly validates our experience to talk with other folks who has been through the same physical and emotional wringer.  There is a great deal of comfort in being around with those of your own kind.

 

As I was making my way toward the door to leave, I happened to catch a full-on, locked-in view of Dad’s Wolverine sweater.  And forty years of stupid football rivalry nonsense went right out the window.  In that spot, I understood that I was more connected to that family of Michiganders than anyone in a packed house at the Horseshoe on the banks of the Olentangy.   

 

I know Grandma and Woody would understand.

Peyton

Headed home from a road trip is always something of a letdown. To work against that, I decided to take a different route back to Florida to get a glimpse of some places and things I hadn’t seen before. There was also those crazy couple of hours from the previous afternoon’s “Make-A-Wish” presentation ceremony that I could play back in my head between the newly planned roadside highlights.

About the time Nebraska turned into Kansas, I recalled a bit of conversation from the day before that the family was looking
forward to using my CAREBIKEs (a bicycle designed to carry a wheelchair) in the spring to take the boys to local baseball games. That was the cherry that topped the whole thing off. With all the thought that went into making CAREBIKE and all the windshield time spent thinking about my bikes in York, Nebraska, for my money, the bikes could serve no higher purpose than enabling the whole family to catch a baseball game.

Back in Florida, there were a handful of days when all was right with the world. The trip had gone better than I could have ever imagined. The new career path was starting to gain some traction.   It felt like my passion was beginning to make a difference.

I was in the middle of Lowe’s getting some hardware for the next CAREBIKE. An email came through on my cell phone. What started out seemingly as a pleasant note from a woman I met in York turned suddenly into news that Peyton had passed away.

I only met Peyton and his brother, Parker, the day they got their CAREBIKEs. I spent a couple of hours around the boys, their Mom and Dad, Chad and Julie, the “Make-A-Wish” folks and half the town of York getting everyone all checked out on the new bikes. With all that was going on there wasn’t much of a chance to really connect with either one of the boys.  And here I was, virtually a stranger, half-the-country away but so immediately devastated that it took me quite some time to find my next few steps.

Again, with all the thought that went into making CAREBIKE, it was always about fun.  It was always about everybody having a chance to get outside and move. Heartbreak had never entered the thought process.  But Peyton never got a chance to experience a fraction of the joy that I’d built into his bike.  The four them never got the chance to ride down to the ball field to catch a bit of the action. Life constantly reminds you that very little of life is fair. Rarely do things work out just as they should. This little boy’s life ended way too early. As a Dad, I wouldn’t allow myself to remotely imagine the nightmare that Chad and
Julie were so suddenly living.

Still in the hardware aisle, as things began to clear, I caught myself going through a mental list of possible reactions. Obviously, there was nothing I can do to change anything. Very little in my control would allow any of Peyton’s family and friends to feel the slightest bit better. The brief brush with his family, along with the 1500 mile separation prohibits me from making the slightest bit of difference to those in and around York. Then it came to came to me.

CAREBIKE is a direct result of my own family’s story.  With all we’ve been through, I’ve learned above all else that when life hands you lemons, you make lemonade.  So in this dark moment I took the same approach.  I decided, in that same spot, to take the energy within this pain and redirect it toward working harder, smarter and more creatively to get more bikes to kids like Peyton. I will use this sense of loss to push myself to move my project into a higher gear so more kids will have the opportunity to fully understand the joy built into each CAREBIKE.

I think Peyton would appreciate that.

Make-a-Wish gift turns wheelchairs into bikes

News-Times/Kate Burke – Their new Carebikes make brothers Peyton (left) and Parker Hoffman even more mobile than their wheelchairs had previously. Their dad, Chad Hoffman, tries out Peyton’s bike while Carebike inventor Rob Holl adjusts Parker’s bike. Some of the boys’ teachers and schoolmates, including Jason Gloystein (back right), came to the Holthus Field House on Saturday, Feb. 27 to see the first test of the new bikes.

Into the wind

By Kate Burke
STAFF WRITER
Published: Thursday, March 4, 2010 7:25 AM CST

 

Peyton Hoffman was grinning before the Carebike was even moving.Click HERE for more Photos

Peyton, 11, and his brother Parker, 10, both like speed, said their parents, Chad and Julie Hoffman. Both boys are confined to wheelchairs as a result of a genetic neurotransmitter disorder.

Until now, walking speed was about the fastest they could go in the open air. They loved rides on the family’s pontoon boat on local sandpits, but that couldn’t be an everyday activity.

Then Julie spotted a short article in “Exceptional Parent” magazine. It described a bicycle modified with a platform for wheelchairs. Cycling could be a family activity.

The need for two of the “Carebikes” pressed the family budget, so the Hoffmans turned to Make-a-Wish Foundation of Nebraska.

 

The foundation and volunteer Wish Granter Ric Horton were able to act swiftly on the Hoffmans’ wish, and on Saturday, Feb. 27, Carebike inventor Rob Holl personally delivered the matched set to the family at the Holthus Field House on the York College campus.

Holl, based in Florida, takes a personal interest in every aspect of his product. He developed the Carebike to facilitate healthy exercise with his own daughter, Megan.

Holl knew from personal experience how confined a family’s world can become as the primary caregivers for a disabled loved one. When Megan reached her early twenties, the family reluctantly placed her in a group home.

Holl said he was advised by a well-meaning social worker that the move would allow his own life to become “larger.”

Holl said, “So I was out praying and walking and looking for my larger life,” when he saw a German-made wheelchair bike in the park.

A big sports fan and an active man himself, Holl knew at once how he could stay close with Megan and help other families “out of that confined place.”

On Holl’s Carebike, the front wheel fork of a 21-speed bike is removed and retrofitted with an anodized aluminum platform large enough to accommodate most wheelchairs.

With bike wheels on the left and right sides and a flip-down ramp on the front, a wheelchair can be backed onto the platform and secured.

A caregiver or companion pedals the bike and steers. Disc brakes give the bike extra stopping power.

Holl made adjustments to two, Husker-red Carebikes and gave a few riding and maintenance tips to the Hoffmans before the family set off for a test ride around the large, open floor of the field house.

Peyton’s grin grew wider as his dad zoomed about. Parker relaxed and closed his eyes into the rush of air.

Back at their starting point, Chad Hoffman stopped alongside Holl and said, “They’re awesome.”

A small crowd, including the brothers’ older sister, Paige, and some of their classmates and teachers from York Elementary and Middle Schools, took turns trying out the Carebikes.

Julie Hoffman repeated her thanks to Holl and Horton.

“This is another good reason for us to get in shape,” she said with a smile.

For more information about Carebikes, visit www.carebikes.com.

Click HERE for more Photos

Christmas & CAREBIKE

As a kid that old adage that “it is better to give than to receive” sounded like just plain crazy talk.   The older I get the more sense that expression begins to make. 

 

My family has started playing it safe by getting each other gifts that come directly off each others lists. Christmas morning is great.  Everybody gets exactly what they want.  But it also cuts out the magic of an unexpected holiday surprise. 

 

I have been working for the past year on a bicycle for wheelchairs.  The whole idea was to create something different for the disabled and the elderly that also involves the people that love and care for them; their caregivers. The bike’s unique design replaces the front wheel of a bicycle with a two-wheeled platform able to accommodate a wheelchair and its occupant. With CAREBIKE, everyone can now get outdoors to enjoy the simple pleasures of a bike ride.

 

The past few months have been a blur of long days and nights trying to find a market for CAREBIKE.  With all the phone calls, presentations, demonstrations, marketing material development, blogging and tweeting, I’m constantly talking, riding or writing.  Usually its some combination of the three.  With so many hats and only one head, there’s a chance to overlook whatever else might be going on.

 

A few days before Christmas, I had a CAREBIKE at a local nursing home, giving some residents a ride around the holiday-decorated grounds. The activity director was already interested in our bike.  Between rides I was running through my bullet-points to an administrator who kept popping out the front door keeping an eye on things.  After a while I turned the bike over to an aide so he could get a feel for how easy CAREBIKE operates.  As we were getting our next rider situated, I was told that ‘Miss M’lynn’ would be turning 99 years old in a few days. 

 

They pedaled off and headed out on the sidewalk.  I stood under the decked out portico, all lights, garland and piped in Christmas music, and watched as they made their way around the corner.  I opened the front door looking around for another crack at the administrator.  I got back outside just in time to watch Miss M’lynn and the aide headed in on the end of their ride.

 

Miss M’lynn was all smiles as they came back into view.  She was grinning from ear-to-ear as the bike rolled to a stop right by the front door.  She looked as if she had enjoyed herself more than everyone else.  I asked her what she thought but she couldn’t hear well enough to respond. The smile was still there even after she was back in her wheelchair and they began to roll her inside. 

 

There were a couple of other riders that day before we finished up.  I made another pitch to the decision makers before loading up the CAREBIKE and heading home. 

 

It might have been the Christmas preparations at the nursing home.  Or it might have been all the decorations I saw driving through town.  But the Christmas spirit came over me right there in the van.  My thoughts drifted away from planning my next business move to wondering about the joy I’d just seen on Miss M’lynn’s face.  It might be that all those smiles where about her reliving bicycle rides from a lifetime ago.  It was also possible that an entire century of Christmases Past came back to her all at once.  Whatever the reason, one thing is for certain; I would have never imagined that someone that elderly could express that much happiness.

 

I realized what my CAREBIKE and I had just accomplished. Miss M’lynn probably wouldn’t have had the opportunity to reconnect with that flood of memories without my bike and I.  I came to think of her CAREBIKE ride as my Christmas present to her.  With her reaction, I understood that the joy in giving is really the same thing as the joy felt in receiving.  And when the whole thing just seems to fall right out of the sky and into your lap, there’s the extra delight of the unexpected holiday surprise.  miss-mlynn

More Magic!

wwos-1

Way back when, there might have been a short period of time where you could look at Megan and not realize any of what had happened to her.  It took a while to see and accept that she was different from the other kids her age.  But from the first moment that became clear, my wife and I have worked very hard to make things right.

 

At first it was the a constant stream of doctors, hospitals and therapists. A lot of medical professionals put in a great deal of effort to heal our daughter. But just as soon as Megan would gain some ground another status seizure would come along and wipe away her progress just like a chalkboard gets erased.  Over time her advancements through therapy slowed and then eventually stopped. 

 

The seizures continue.  They have gotten shorter and aren’t as severe but the last twenty years of medicine still can’t prevent them.  Megan is profoundly cognitively and physically disabled.    She has recently moved to a group home nearby that’s better able to meet all her needs.  She is a beautiful and happy young woman.  And I am still doing what I can to make things better.

 

Two decades of 24/7 caregiving left me with a deep appreciation for how that commitment can take from everyday life.  CAREBIKE is an attempt to make up for what gets overlooked.  

 

Yesterday I picked up Megan with a CAREBIKE in the back of the van and we came out to ‘Wild World of Sports’ to watch the Special Olympics Finals.  Just like it says in your brochures, it was a magical experience.   

 

We got loaded up on the CAREBIKE out in the parking lot and rolled our way through the main gate.  Once inside, we saw everything from one corner of the park to the other. Along with  all the different Special Olympic events in all the different venues, we got to check out a couple of women’s college soccer teams practicing for their conference tournament.  Everyone there couldn’t have been more inviting and helpful.  The weather was gorgeous.  It was a perfect day! 

 

On the way home it hit me: With the right piece of equipment (CAREBIKE) and the right setting (Disney has accessibility down like no one else) there aren’t any barriers. Megan had the chance to take in everything that was going on out there. She saw it all. She had the opportunity to be in that moment like everyone else there.  And together, we had the chance to share that experience.  

 

Megan was sitting in the passenger seat of the van.  The CAREBIKE and her wheelchair were still attached, riding in the back.  I was talking to her about the fun we’d just had together.  I was rambling on, like I always do, and she’d look at me and smile, like she always does.  But some of that Disney Magic was still with us there in the van.  A quick glance over and I saw her for a split second without all her limitations.  The effortless time we’d just spent together allowed me a very short glimpse at the woman she might have been.  In that instant everything about my daughter was right.    

Bikeathon Press Release

CHARACTER, COURAGE AND CARING

LEBRON’S BIKEATHON HEROES

            There will be a heroic story quietly occurring amidst the cacophony of hundreds of bicycle riders in the LeBron’s (James) State Farm King for Kids Bikeathon this Saturday, August 22 in downtown Akron. 

Eleven year old Andrew Petrisko desperately wants to join the other children, sporting ear-to-ear grins as they ride with the NBA’s premier superstar from Akron.  But his nearly life-long battle with kidney disease— FSGS (Focal Segmental Glomerulo Sclerosis) — threatened to keep Andrew from the starting line this Saturday morning with LeBron James and several of his own celebrity friends. 

The NBA All Star from the Cleveland Cavaliers will host the popular family-friendly fundraising event to recognize and reward Akron-area children who have achieved academic success, improved their physical fitness and made important contributions to the community.  Registration is at 7:30 a.m., the eight-mile main ride, three-mile family ride and the kids’ invitational ride begin at 9 at Canal Park.  (For more, go to http://www.kingforkidsbikeathon.com

While the race features more than 3,500 riders taking on the streets of Akron, the Kids’ Invitational includes 400 children ages nine to 14 who have been nominated for their character, courage or acts of merit.  Andrew Petrisko is one of the nominees this year.  Akron Children’s Hospital submitted his name as one of five children who have displayed tenacity and optimism in their battles with chronic illnesses.

Andrew became aware of the nomination during his hospitalization in the spring.  His father, Scott Petrisko, said, ‘Things became very scary’, as Andrew’s immune system sent his body spiraling toward kidney failure.  At age six, doctors removed both of Andrew’s kidneys.  Then, his mother, Rebecca, donated a kidney to him. 

His condition stabilized for the next several years, but this summer doctors at Children’s Hospital had to come up with new ways to treat Andrew’s illness.  But the treatments put a stop to many of his activities.  Rebecca Petrisko said, ‘Andrew doesn’t complain or waste time feeling sorry for himself.  He’s a great role model for other children’.  She went on to say that Andrew stayed engaged in athletics during the summer by coaching his little sister’s softball team.

When it became apparent that his condition might keep him out of the bikeathon, LaTonya Lewis from Children’s Hospital reached out for alternatives.  City of Akron Coordinator for Arts and Children’s Programs, Suzie Graham, agreed to research possibilities for making the event happen for Andrew.

That’s when Rob Holl, formerly of Stark County and now a Florida resident, stepped him.  His ties to Children’s Hospital go back to the time they cared for his infant daughter 23 years ago.  Holl even designed what he calls the Carebike, for her to improve the quality of her life and the experiences that are often missed by those who live within the limitations of a wheelchair.  The Carebike is a combination bicycle and wheelchair, and Rob Holl jumped at the chance to provide one so Andrew could ride. 

This morning, Holl was scheduled to leave Florida with two Carebikes in tow on a journey back to Akron.  But, as it turns out, Andrew’s treatments have begun to pull him out of kidney failure.  His strong recovery means he will join LeBron and the other 399 children at the starting line of the invitational ride on his new Schwinn Evolution two-wheel bike.

And the Carebikes coming to Akron?  Rob Holl is providing them to two other nominees of Children’s Hospital, both of whom are fighting tie own battle with chronic illness.  Through his generosity and inventive design, they’ll be in the ride, and Rob himself will serve as one of the boy’s chaperones, riding him through the one mile course. 

Saturday will be a day to celebrate heroes on and off the court.

CAREBIKE selected to help some kids hang with LeBron!

 

On August 22nd, NBA MVP LeBron James hosts a bicycle rally in Akron, Ohio called ‘LeBron’s King for Kids Bikeathon’.   Thousands of riders will take over the city streets to honor the areas children and promote healthy lifestyles and physical fitness.

CAREBIKE is headed up I-77 so that some patients at Akron Children’s Hospital can be part of the big day! 

Visit the website next week for photos and an update on all the fun!

Everyone should have a bike.