by Joe Feidt
I was having trouble swallowing. That’s how it started. It’s now been 11 years since I heard my neurologist say, “Joe, I’ve got good news and bad news. The good news is you don’t have ALS; the bad news is you have IBM.” I said, “I have WHAT?!”
My reality today is it takes me about five minutes to pull on my socks and ten minutes to get dressed. I have to use all of my leg strength to simply stand up. Low chairs and benches? I’m not sitting there! And it takes me, oh, about a half hour to eat a hamburger. And yet …
Despite the IBM, I’ve been able to lead a relatively normal life and maybe you can too. This is due to good fortune and staying active. I play disc golf and pickleball, lift weights, take short hikes, and work. And I eat well. So far so good; knock on wood.
I admit I’m a slacker occasionally, but I try to do something active every day: Sometimes I play disc golf on a pitch-and-putt course overlooking the Mississippi River. It’s getting harder to throw but I can still do it. I enjoy getting outside and walking through a beautiful course, breathing fresh air, and most importantly (for me) having fun with my longtime golfing buddies. I feel a sense of accomplishment just playing nine short holes. (FYI, disc golf is like traditional golf, but instead of using a ball and clubs, you throw a disc (aka Frisbee) into a disc-catching contraption. More info here.
My life’s passion: Disc golf
My father told me: “Life passes quickly. Find something you really like to do and stay with it.” I followed his advice. When I was 26, I discovered disc golf and have been playing and promoting it for about 50 years. Today, disc golf is one of the fastest-growing sports in the world. This year’s world championships will take place in Finland, and the sport will be an event in the 2025 World Games — a stepping stone to the Olympics. Thousands of disc golf courses are located in some 90 countries and most are free to play. No matter where you live, there’s probably a course not too far away.
During the winter I go to the Midway YMCA in St. Paul and play a couple of games of pickleball. It’s getting harder to “pickle,” but I can still grip the paddle and hit a ball. Like disc golf, I’m mindful of my footing; I’m in full Fall Avoidance Mode (FAM) every step I take. After pickleball I do strength training which is so important. On nice days, I and my partner, Susanna, go for nature walks using hiking poles for stability.
To keep my mind sharp, I edit DiscGolfer magazine, a 64-page, full color quarterly published by the Professional Disc Golf Association, the governing body of the sport. I collaborate with eight writers and one very talented art director. I’m also writing my memoire. DiscGolfer is available in paper and digital formats.
Hope: A drug called ABC008
We IBMers need hope. Here is some: a drug called ulviprubart (aka ABC008). I’m honored (and fortunate) to be taking part in a clinical trial to try to find the miracle drug that we long for. I’m one of just a few hundred people in the whole world taking part in this trial. It started over a year ago and is happening now in the US, UK, Europe, and Australia. [Ed: This trial is not currently recruiting new patients.]
Every two months I drive 75 miles south to the Mayo Clinic and receive two injections in my abdomen. No one yet knows if it’s our miracle drug, but they tell me there are no adverse side effects. Yay! Is ulviprubart our IBM silver bullet? Fingers and toes crossed.
Thanks to good fortune and staying active, life is good 11 years after hearing: “You have IBM.” I’m so fortunate this disorder has been progressing slowly and that I have a loving, supportive partner who is totally with me on our IBM journey.
Joe Feidt lives in Saint Paul, MN where he is known as the Father of Disc Golf. He was inducted into the World Disc Golf Hall of Fame in 2011.
Wow!! Your story gives me hope. I started with a rash that enveloped my whole body. It itched and hurt at the same time. Finally after almost a whole year, I was finally diagnosed with Dermatomyositis. Countless doctors and even dermatologists told me I had eczema. When I questioned it, I was told very sternly, “You have eczema!!” Wow!! Dump her!! I am looking forward to the many doctors I have to see. Ya, right!! I will ask about the drug you are taking. I really feel good so far. Knowing that this could change scares me.
Thank you for sharing your story!! I wish you all the best!!