09/2014 Newsletter

Quarterly Newsletter

September, 2014 Fall Newsletter of The Joseph Groh Foundation

News Bytes

First Ever Chicago Golf Tournament a Success

The first ever Chicago golf tournament for the Joseph Groh foundation was held on Monday, September 15 at Makray Memorial Golf Club in Barrington, Illinois. The tournament had a wonderful response for a first-year event, 63 golfers participated and gross revenue of $25,000 was raised for the event. Mother Nature was kind to the golfers because even though it was cloudy, cool, and rain was in the area, it held off until the final hole! The guest of honor was Andrew Behoff and his family, (pictured at table) recipient of a grant for a handicapped accessible van in 2013.

Thank you sponsors, golfers and volunteers for another great event!

Comfortech Nashville Not Singing the Blues!

Comfortech has become the yearly event for the HVACR, hydronics and plumbing industries, bringing together the latest products, trends and business solutions for mechanical contractors. The event brings together unmatched education sessions focused exclusively on topics of interest to the mechanical community, entertaining and informative keynote speakers, a robust tradeshow featuring the latest products and technology by the biggest names in the industry and evening social events which provide opportunities for peer to peer networking.

For the past four years the Joseph Groh foundation has had a booth at the tradeshow, staffed by Vicki and John Laplant as well as Mike Hajduk. Each have their own displays at Comfortech, and take turns rotating through the foundation booth. One of the foundations grant recipients in 2013 came through a lead provided at this event. The 2014 show was a spectacular success, bringing in $13,000 in donations from contractors attending the show.

Thank you to everyone who donated in Nashville!

2014 Will Be Record Year For Grant $ And # Recipients

Thanks to increased awareness, more events and the success of these endeavors, the Joseph Groh foundation is poised to award more grant dollars to more recipients than any year in its history. The previous record was in 2012 when the foundation granted $63,000 to five individuals. In 2014, the foundation is on track to provide seven grants for an estimated $80,000. This would not be possible without all of the loyal supporters of the foundation and for those who volunteer their time. The foundation does not financially compensate any board member or volunteer for their efforts, these individuals give the gift of their time, which as we all know is a precious commodity.

Thank you to all the friends of the foundation who make these results possible! Because of you, people living with life altering disabilities are made more productive and more independent, and perhaps most important of all, you have given them the gift of hope. They thank all of you as well!

Painless New Ways to Donate to the Foundation

Recently we wrote about Amazon Smile and how that was a painless way to donate to the Joseph Groh foundation. We now have two new ways to donate to the foundation, one is through your purchases at Tom Thumb and the other is through your purchases at Albertsons. Tom Thumb will donate 1% of your purchases through it's Good Neighbor program and Albertsons will donate between 1% and 5% through their Community Neighbor program. For details on all three of these programs and how to sign up, see the story on the bottom right of the foundation homepage entitled "Shop at Amazon Smile, Tom Thumb and Albertsons to Donate to the JGF Foundation". Send us an e-mail if you have difficulty signing up for any of these programs, and we look forward to seeing our legion of retail followers began to drive donations to help those living with life altering disabilities!

People You Should Know

Prior to its launch, Google handed out thousands of glass devices in a move to test and develop the product. When Alex Blaszczuk heard about it, she wanted in! There was only one wrinkle, Alex is paralyzed from the chest down and is technically a quadriplegic. The paralysis occurred in the fall of 2011 as the result of a car accident while she was en route to a celebratory camping trip. Google set up a contest to determine who would be in on the test, to which Alex submitted the following information. "I am a New Yorker, a law student, and a quadriplegic. If I had Google Glass used to I could finally capture my life on my own. I would show the world how to thrive with physical limitations in the most interesting city on the planet. With Glass, paralysis does not have to be paralyzing." Suitably impressed, Google offered Alex the Explorer edition of its device.

Alex recently posted a short video showing how Google Glass has, in just a short time, helped open up many new possibilities in her life and rebuild the confidence she lost in the wake of the accident. As Alex herself says, "Glass means I can do things I thought I wouldn't be able to do anymore." She explains that while Glass doesn't fix a disability, it is a more accessible tool for self-expression. "For communities that are often silent, hidden and marginalized – like that of people with disabilities – these tools are essential. The more we engage people with disabilities to share their stories and passions, the more they become people rather than stereotypes."

Alex's account of her experiences with Glass shows how for people in her situation, the device can turn out to be of huge benefit, helping to restore independence and boost confidence. Check out this short video (link here) and see how Alex fared when she finally got to take her camping trip – with Google Glass!

From Two Wheels to Four

In May Joe Groh released his first book entitled, From Two Wheels to Four. Based on real-life events, this book talks about how overcoming obstacles is a function of your life experiences, your support network and your faith. The story follows Joe's life from childhood to the point of a major life altering accident. It concludes with how this leads the family to look outward in order to inspire hope among those living with permanent and life altering disabilities.

Available now, see the foundation website for ordering information. 100% of the proceeds benefit the Joseph Groh foundation.

A Day in the Life

This feature is a sometimes humorous, sometimes offbeat, and sometimes irreverent look at life as seen through the eyes of a severely disabled person. Management takes no responsibility for these ramblings.

Drink Your Medicine

When I grew up, doctors and lawyers were held in the highest esteem by my parents generation. When a certain family was brought up at the dinner table, my parents would remark, "Oh his dad is a doctor/lawyer". Their tone instilled a sense of reverence in my young mind for these professions. I even thought of majoring in political science in college, then going to law school and entering politics. Now when someone mentions lawyers or politicians, the likely reaction is an inward recoil and the sense of something slimy or disreputable.

While doctors have not tumbled quite as far in the hierarchy of reputation, they certainly don't stand on the platform of sainthood like they once did. Given my now rather considerable experience with the medical profession, I am more apt to listen to them with an almost jaundiced ear. A recent experience bears some of the reasons why.

I am living with a condition called achalasia, which is a disease of the esophagus. In my case, the lower esophageal valve which lets food into my stomach will not relax, meaning that it is getting harder and harder to swallow food and drink. It is a progressive disease that affects about 1 in 100,000 people and no one knows what it is caused from. The fact that it is progressive means that at some point, unless something is done, you will no longer be able to swallow and would have to be fed through a tube. This was something I had prior to my accident and has nothing to do with the paralysis. It had progressed however to the point where I needed to do something about it. The ultimate fix is a surgery called Heller myotomy with fundoplication. I will let you look it up, it took me ten minutes for my voice software to even spell it right! In order to test whether or not such a radical procedure might work in my case, the surgeon suggested I first have a series of Botox shots in my esophagus. The Botox procedure is temporary as it only lasts from six months to two years, but apparently it is a good predictor of success for the myotomy surgery. And no, it will not make my neck look like Arnold Schwarzenegger's.

I went in to a local hospital for the outpatient procedure which was supposed to last an hour and a half. Only it turned into Gilligan's Island. I woke up in the ICU on a ventilator because I had aspirated severely during the procedure. Before they took me off the vent a week later, they completed the Botox procedure which had been called off the week before. Before I could officially eat or drink anything, I had to undergo a barium swallow test. That consisted of drinking a white liquid they maintained "tasted like a milkshake", only it contains barium. Barium is a chemical element with atomic number 56, a fact you can only appreciate when you see what it does to your digestive system. It looked like a shake, it had the consistency of a shake but it did not taste like a shake. It tasted like something else that starts with the same letters. The barium allows technicians to see your esophagus as you swallow, thereby allowing them to compare it to a normal esophagus. My wife spoke to the technician first following my procedure. "How did he do" she asked. "Not good" was the reply. Shortly thereafter, the speech pathologist told us her prognosis. Why was a speech pathologist doing this, I ask myself prior to hearing her diagnosis. I assumed she was the resident expert, and I eagerly awaited to hear what she had to say. "The Botox treatment did not work" she said. "We cannot allow you to eat or drink anything until we get this condition corrected." Stunned, I ask her to propose some solutions. "You can take care flight to Methodist and have an emergency myotomy, or we could put a feeding tube in". I was in too much of a shock to reply, so I suggested we go back to my room. When we got there, I momentarily began to feel sorry for myself. First the paralysis, now this, it almost felt like too much to bear. Then anger, followed by reason settled in. What the pathologist and doctors didn't know was that I had started to eat the day before as soon as they took the vent out. The night before I had eaten a number of things including a milkshake the kids brought from Sonic. Milkshakes were one of those items that were starting to give me difficulty before, but the previous night I had no such issues. Minutes later the G.I. Doctor came in who had administered the Botox procedure and cheerily asked "what's up"? I knew damn well he knew what was up, and I relayed my experience with the speech pathologist. I saw his face twist into an expression of anger, but he didn't say anything. Minutes later the G.I. Doctor who had performed the original outpatient procedure came in. Again I relayed my experience with the speech pathologist, then confessed to cheating with food the day before and suggested we take a more reasonable approach. I proposed that I go home and heal, that my body was not ready for another surgery right now. I was weakened from not having eaten for a week, I still had fluid in my lungs and my legs were on the verge of skin breakdown due to nurses putting on compression boots, which we had asked them not to do. I lied to the doctor and told him I would eat normally and sensibly, and we would see how things went. He agreed to that approach, and literally within minutes they were ready to process my discharge.

Protocol called for me to start off with a liquid diet, then gradually proceed over the course of the next week to a normal diet if all went well. I cannot say that I followed protocol. I can say however that eating is now normal, like I never had a problem. It felt both strange and exhilarating to eat a normal meal several days after discharge, one that would've definitely been difficult before the Botox procedure. It was the first day of the NFL season, we met with friends and I had bratewurst with sauerkraut, hors d'oeuvres and a German beer. Next month I have a follow appointment with my G.I. doctor, I'm tempted to bring donuts so he can watch me eat them. (They had become severely difficult to swallow previously) I think while I'm at it, I'll bring some extras for the speech pathologist!