Patrick Wehner: Living With ALS

“You need to get a check up,” Patrick Wehner’s mom told him one day. “Sometimes you speak like you’re drunk.”

This was the prompting which finally propelled Patrick to make an appointment with the doctor. He had noticed some symptoms for months; something wasn’t quite right. An avid athlete who practiced judo and mountain biking, he often found himself feeling weak and tired.

It’s just stress, he told himself. His job was demanding and his personal life with the mother of his daughter was falling apart. But he couldn’t ignore the symptoms any longer after he began dropping things. His grip was no longer what it used to be.

And his grip was important to him as a competitive barefoot water skier.

Patrick started walking on water when he was eight, after watching his father and his uncle in the sport. By the time he was twelve, he was hooked on barefooting and entered his first competition. That same summer, he unexpectedly found himself placed on the German team in the 1988 Barefoot Worlds. Patrick and his father had traveled to Australia to watch the competition and he suddenly found himself lined up to compete.

“That tournament was a catastrophe,” Patrick laughed. “The German team wasn’t efficient at that time, so they just added me. I missed all my starts in tricks, fell while slaloming and I didn’t land a single jump.”

Soon, barefoot water skiing became Patrick’s life. It was a sport which challenged him to new heights. He wanted to become a World champion and he trained hard for it year after year.  In 1998, Patrick came in second Overall at the Worlds. The following year he set a World Record and won gold in tricks at the 2002 Worlds.

By 2006, Patrick put the sport on hold after winning bronze in the Worlds.  Life had stepped in and he found his priorities shifting to family, work, and a new house. “I didn’t have a ‘winner’ attitude anymore,” Patrick recalled.  “My daughter was born-- I became a dad. I had a different job. I also had some small injuries and it became difficult to find time to train.”  A torn ligament took him out of the running for the next Worlds.

In 2010, Patrick focused on sorting out his personal life. He broke up with the mother of his daughter-- they had been together for 13 years. Barefooting was the last thing on his mind, although he occasionally skied for fun.  That’s when Patrick noticed something alarming: he was losing his grip from time to time. “I experienced weakness in my hands,” he said. “I noticed I had lost a lot of power in my arms. I was involved in judo and mountain biking-- trying to keep in shape-- but I was becoming weaker and weaker.”  Patrick chalked it up to the changes in his personal life and the stress of a new job.

But once his mother brought up the changes in his speech, Patrick knew he couldn’t ignore the symptoms any longer.  In December, 2010, he made an appointment with his doctor, who referred him to a neuro specialist.  He went through a battery of tests at the hospital. In March, 2011, a doctor gave him the diagnosis: Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s Disease. “By the time they gave me the diagnosis, I already knew what was happening,” said Patrick.  “The whole time, I was hoping for anything but ALS.  Other diseases we can cure, but not ALS.”

The averages associated with ALS are grim; the life expectancy is often between two to five years. Little by little, the disease takes over muscles, slowly limiting movement and function.  More than half live over five years; ten percent live over ten years and five percent put the disease on hold for over 20 years.  Stephen Hawking has dealt with ALS for over 40 years.

The diagnosis was like a slap in the face, but Patrick was determined to do more than just cope with it. He had always prided himself on success with his job and career, and his focus used to be on more material things in life. After the diagnosis, his mission was simple: material things no longer mattered.  He wanted to spend his time with his family, with as much laughter as possible.  His doctor advised him to quit his job and remove that source of stress from his life.  Patrick resisted at first, and switched to part time work. He began to realize that his doctor was right, the job was not worth the one precious thing that he craved: time.  Fortunately, the French insurance system would cover his expenses and provide him with a living.

“I’m not afraid to die--I’ve never thought about death-- that’s far from my mind,” said Patrick.   “I’m afraid of being a burden for my family and for the people around me. To become only an observer of life, not a participant in life-- because you lose your ability to move and walk and to do things with your hands... and lose the ability to talk or enjoy food-- that’s what scares me.”

The hardest part of dealing with ALS is the constant questions from others inquiring about his health. “I have moments...the moments that are really hard are fortunately seldom,” said Patrick.    “Sometimes my hands don’t work-- those moments are difficult-- you feel you’re limited. Then it’s more annoying when someone comes along and does it or helps me...you feel handicapped.  I feel like I’m of no use when that happens.  When they ask ‘how are you,’  I always say 'I’m fine.'  What the hell you want me to tell you-- 'I feel like shit, I’m sick,  and in two months, I might be in a wheelchair?'   Sometimes when I’m tired, I will be a little bitter.”

Prior to the diagnosis, Patrick reunited with his first love, a girl he dated for six years as a teen. The two of them had kept in touch for over twenty years and began to see each other again.  When he told her the news, he was blunt with her. “You have a decision to make,” he said.  For Helene, the decision was a simple one. She had waited over 20 years for Patrick, and there was no way she was going to lose him again.  Ten days after the diagnosis, Patrick proposed, and they were married in September, 2011.

"With ALS you are sentenced. That's a fact. But isn't that the case of any human being?" said Patrick.  "A stupid car accident and bang, you're gone. No warning!

"Of course you can take the ALS statistics--two to five years--for granted and just give yourself up," he continued. "Or you can tell yourself that nothing is predictable, that statistics are meaningless figures on the paper. You can consider ALS as the warning that some people will never get and start making the right decisions, making the best of your time. You can see the positive: you actually don’t know when and you don’t know how fast ALS will take its toll. That’s the good part...  you can look at it as a half full glass. I try to tell myself, it’s not over until it’s over.  I can find the inner strength to slow it down.”

That strong, mental inner strength seems to be working. Patrick learned to re-work his priorities and to use his time wisely. He learned to reduce the stress in his life and surround himself with positive energy. “I’ve learned to say 'No, I don’t want to,'” said Patrick.  “My time is precious and I don’t want to waste it. I do what I want and what I feel like doing.  I spend time with people I want to spend time with.”

A few months before the diagnosis, a woman near him was also diagnosed. Her attitude was markedly different from Patrick’s. She quickly became depressed and within four weeks, she was using a wheelchair.  Patrick also connected with another woman who was diagnosed nine years ago. From her, he learned the difference between positive and negative stress, and how to manage that in his life. He also decided that he had done enough research on ALS, and rather than focus on the disease, he wanted to focus on life. Every day, he surrounds himself with the fullness of life. “If everyone could give themselves as much positive input as possible, it would have good outcomes in every kind of way.  It’s good for them, and it’s good for others,” he said.

As for barefooting, the passion he still loves, Patrick faces a tough dilemma. On one hand, doctors have cautioned him that the extreme sport could hasten the onset of muscle degeneration. Patrick also doesn’t have the strength and stamina that the sport requires. But not long ago, he donned his wetsuit and went for a couple of runs on the water, choosing to enjoy it to the fullest.

“I can either sit and say 'I’m doomed, goodbye nice world,' or I can find another way and keep the faith--and keep saying ‘this isn’t over until it's over.’”

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  • I started reading this post because my grandfather battled ALS and I am always interested in news or stories about it. However, the message about stress and being happy can be applied to anyone. Thanks for changing my perspective a bit.

  • I agree, Anne. I learned a lot from Patrick just from getting to know him and writing this.

  • From Swampy Bouchard, coach at the World Barefoot Center: You can not find a nicer person in this world then Patrick. Always respectful and polite and what a great footer he turned out to be. I was one of his biggest fans and I still am to this day. Keep fighting my friend keep fighting, remember winners never quit and your a winner.

  • From Fred Groen, New Zealand: Hi Patrick. Just learnt of your battle. You are just the man to beat the statistics and get the best out of your situation. Barefooters never give up.

  • From Philippe Poyet, France... Patrick, big big BIG BIG wishes for you to be back on the water one of these days. I have a thought for you each and every week since I was aware of this struggle you're in. You've brought so much to the sport of barefooting and now the sport MUST refuel you this positive energy you need. Like all the championships you've won over the years, you will won this new challenge ! Keep fighting and be teh best.

  • From Enrico "Chico" Cohen, Dear Patrick, Helen, Dominique and rest of the family Wehner. We know each other so long I still remember one of the first competitions we met it was in Lago Pusiano nearby Como Italy. Patrick was a little nice boy what was competing the big and older guys. In those years we could beat him but that was just for a short time! Later he was the top and I always loved to see him skiing so clean and under control. Last year when he visit me in the Netherlands we spoke about his ALS and I was pleased to see he is so full of energy and he has the support and love of Helen. I see every week a few patients with ALS on the OR but very rarely they have the strenght like Patrick! Keep on fighting and positive Patrick, that's how you are and that's what keep you strong.

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