When every minute counts
John and Mike Madzin are identical twins who recently were diagnosed with genetic ALS. This deadly disease now has a strong hold on these triathletes and John Madzin was kind enough to give us a few minutes of his precious time. His brother Mike also opened up to us.
After college the twins went to California to work on getting jobs in the finance world. While there they met Dan Empfield and Emilio DeSoto.
"I remember like yesterday when John and I met Dan [Empfield] amd Emilio [DeSoto] in San Diego, and they got us started in triathlons. We picked their brains for training advice, bike setup etc. That is why I always wear DeSoto stuff for my IRONMAN events," said Mike Madzin. "When we first started we just had old road bikes because we could not afford a new bike. I think the first real tri-bike was a Litespeed Tachyon. Then QR Redstone and Litespeed Blade. Then QR Caliente and finally our last IRONMAN together was a QR CD01."
Mike Madzin shared that ALS is genetic in their family.
"Our dad and his brother (our uncle Paul) had it, and their mother also had it. We had a 50/50 chance of getting it. John's symptoms started last year, unfortunately his ALS has progressed very fast. I am in the very early stages with my symptoms and seem to be following John. I wish and pray every day I could take John's ALS and he could be spared," added Mike Madzin.
I called John Madzin in late September to simply check in with him. He was on a ventilator and told me about his daily battle with the genetic ALS and that he may not survive this October. I knew he was sick, but I had no idea how bad the situation was, and the news completely stunned me. I then reached out to him to see if he wanted to talk about this deadly disease while he still could, and he kindly agreed.
Slowtwitch: John thank you so much for your time.
John Madzin: Thank you Herbert for helping bring awareness to this terrible disease.
ST: People often talk about time being a precious commodity, and while that is true, it means different things to different people, as you can likely attest.
John: After being diagnosed with ALS, how much time you have left is all you think about. I think about how much time I have left to spend with my wife Jenny, my twin brother Mike who also has ALS, and my family and friends.
ST: When exactly did you get the diagnosis and what was predicted for you as the best case scenario at that time?
John: I was officially diagnosed in January 2017 and my twin brother Mike was diagnosed a few months later. ALS progresses differently for each person. In my case, it is very rapid and I will not make it to the end of the year. Mike seems to be progressing at a slower pace but nonetheless he is progressing.
ST: Why did you seek the medical evaluation at that time?
John: I knew something was not right in my leg and arm after being diagnosed with a pulled muscle. My injury never got better.
ST: You mentioned that your identical twin brother Michael has also been diagnosed. What is his outlook?
John: His ALS is progressing but not as fast as mine. He is probably 9 months behind me. It must be extremely difficult for him watching my progression and knowing he is going down the same road.
ST: What do you mostly occupy your time with now?
John: My time is spent with my wife Jenny, my brother Mike, and friends and family. I am trying to make sure everything goes smoothly for Jenny when I pass. This includes funeral planning and financial planning.
ALS takes everything from you. This time last year, I was rowing every morning and bike riding. My wife and I even went on a 70-mile mountain bike ride in mid-October. Now, the left side of my body is 100% paralyzed, and the right side is about 95% paralyzed.
I have realized long ago, that ALS will take everything from me physically but I will not let it take my mind. I’m staying positive.
ST: In 2014 you did IRONMAN Chattanooga. Was that the last full distance race for you?
John: Ironman Chatty was my last Ironman. Mike and I along with many friends in Chatty participated in the event.
ST: How did it find you when you learned back then that Chattanooga would get an IRONMAN?
John: I like Chatty, so it’s always fun to learn they were going to host the event. It’s a great outdoor city.
ST: When did you start triathlon and as far as you remember, how many events did you do?
John: Mike and I started triathlon in 1996 in San Diego. It was something to do to stay in shape. We rowed in college. Not sure how many events over the years. I’ve completed 5 IRONMAN events and I think Mike has finished 8 events.
ST: Looking back is there any event or occurrence in triathlon that you hold especially fond in your heart?
John: For me, the best part of triathlon is training with friends like yourself. Going on long bike rides followed by lunch was always a good time. The race itself is kind of lonely.
ST: Triathlon is a very selfish sport, but neither you nor your brother fit that description. If anything you were always willing to help other to get ready for their events, including but not limiting wrenching on bikes late at night.
John: We both like to help others. I was never a serious triathlete, so I would rather help others in need so they can have a good race.
ST: I actually always predicted that a friend could come to your hotel room the night before a big IRONMAN race of yours who needed to put his bike together from scratch, and another friend needed to be picked up from an airport 5 hours away and you would work hard making sure both things happened, even if you got no sleep. Would you agree?
John: Let’s just say, given that scenario, we would make it happen.
ST: Now that you are in need of assistance, do you get all the support you need?
John: We both have the mindset of helping others in need but ask for little help ourselves. In my case, my wife Jenny takes care of me on a daily basis. Without her, I would already be dead. I have all the support I need right now and besides nothing is covered by insurance. There really is nothing you can do to slow this disease. My lung capacity has decreased by 10 points each month since February so the math is easy. I know where I’m at and I know what to expect. It’s just a matter of time when I stop breathing.
As I said earlier, nothing has been covered by insurance. It’s like they don’t even know what is ALS. Everything from blood test, genetic testing, wheelchair, leg braces, ventilator and every other medical procedure has been denied. I’m not even going to ask for hospice care because I’m sure that will be denied too. As an ALS patient I’m entitled to Medicare, a system I have paid into since I was 13 years old, and was also denied. I gave up on appealing their decision after receiving a 25-page appeal form. I guess the self-inflicted diseases like Type II diabetes from eating and drinking junk food, lung diseases from smoking, liver and kidney disease from excessive drinking, opioid addictions, and every other preventable disease takes precedent over ALS.
ST: Does that make you mad or sad?
John: I’m not sad or angry about not receiving Medicare or insurance coverage. Life is too short to be angry or sad. I’ve realized a long time ago to not rely on insurance companies. It’s standard practice for them to deny coverage. What is disappointing is being denied Medicare coverage, when I needed it the most, after paying into the system for such a long time. The rules state that I’m eligible for Medicare at diagnosis in January 2017 yet I was denied coverage until December 2017. I was also told by a friend, who knows someone that works at the Social Security office, that they are told to deny or delay coverage. I also know I’m not the only ALS patient this has happened to when I read the ALS forums.
In the end, I know I cannot rely on insurance or Medicare coverage for help. They don’t care at all about helping patients. My disease is progressing extremely fast and I cannot wait months for appeals. We ended up purchasing a wheelchair (not the correct size but it will do) on Craigslist and buying braces and canes on Amazon for my care. I cannot sleep in my bed upstairs so I sleep in a chair in the living room. I even sometimes sleep in my wheelchair. We make due the best we can given the circumstances. The last thing I want to do right now is file appeals for coverage. I literally don’t have any time. I just want to spend what little time I have left with my wife, brother, and family and friends.
ALS is a slow painful way to die. Every muscle and joint in my body hurts. In my current state, my breathing resembles a fish out of water and eating is a challenge while trying not to choke. ALS is a disease that deserves awareness and a cure. As identical twins, Mike and I will continue to do every thing we can for ALS research. Our hope is that someday our contributions will help solve a piece or two of the ALS puzzle for others. That is way more important than being mad or sad at Medicare or the insurance companies.
ST: What can folks do in their respective communities to fight ALS?
John: ALS is a terrible disease with no cure whatsoever at this time. There is some medicine to help slow the progression but again nobody has ever survived from this disease. ALS is an orphan disease that receives little attention. I do believe it can be cured, it just needs awareness.
Since our diagnoses, we realize that being identical twins, we are in the unique position to help ALS researchers find a cure. While a cure is not in our future, we have done everything possible to help future ALS individuals. We have participated in numerous studies. We have donated countless units of blood for genetic, epigenetic, and human genome studies, and we have donated countless units of Cerebral Spinal Fluid, taken by lumbar puncture, for research. We also have given core muscle and nerve samples for research, plus we have endured a whole host of uncomfortable tests to help ALS research. Even though our time on this earth is short, we will continue to do everything we can to help find a cure for others.
ST: Anything else we should know?
John: We started an ALS awareness campaign at madzin.com When you purchase a shirt, after the cost of the shirt, a donation is made to the Emory ALS research center.
You may also donate to the Emory ALS research center in the name of John and Mike Madzin at neurology.emory.edu/ALS/
EDIT: We added that 5th picture of him that shows him today, contrasted against the 2nd picture with his wife Jenny that was taken Thanksgiving 2016.
