I have really been shirking my blog writing duties lately due to the “I can’t take my eyes off the train wreck” also known as the 2016 Presidential Election.
Anywho, I have returned to writing about my favorite subject; medical cannabis success stories. Today, I am featuring a southern Illinois resident, Barry Coughlin, who has had ALS for 15 years. Remember the “Ice Bucket Challenge” craze of summer, 2014? It raised money for ALS research. He should not be alive, since the life-expectancy, once diagnosed, is 3-5 years. Barry has defied the odds and he credits his medical cannabis use for keeping him alive.
Here’s Barry wishing everyone a Happy Halloween
I did a video chat with Barry and his caretaker, Becky, whom I needed to help me understand Barry. He is in a wheelchair, almost completely paralyzed. He can move his head and his hands AND he can still speak, albeit rather slurred. Becky can understand every word. Me, not so much. We let Barry do all the talking but every now and then I couldn’t understand and asked Becky for help.
We started the interview with Barry showing me his very expensive robotic arm; 1 of 12 in the country. Barry was able to purchase one through his GoFundMe account. He wanted to show me that he could scratch an itch with it…something we able bodied people take for granted and something he was previously unable to do. Here’s a video of Barry and his arm. It works via a joystick on his wheelchair or a head control.
Barry was diagnosed with ALS in 2001. Within 2 years, he lost 50% of his ability to function and after 5 years it was up to 80%. But, he does NOT require any breathing apparati or feeding tubes which is pretty remarkable. He isn’t getting any worse. His medical cannabis usage is preserving what neuron connections he still has. Here’s a link to information about ALS or amyotrophic lateral sclerosis. It is also known as Lou Gehrig’s Disease as he was the first celebrity to be diagnosed with it. Stephen Hawking also has it.
Barry had been a cannabis user in his early teens and 20s but stopped using it. However, he met Cathy Jordan in 2001, another long time ALS survivor, when he lived in Florida. She famously credits being alive today to her cannabis usage. She was diagnosed with the disease in 1986. She tours all over the country, talking about medical cannabis. Also confined to a wheelchair, she is still alive today. Meeting her was enough to convince Barry to resume his cannabis usage.
Barry returned to Illinois in 2002 and began using cannabis to manage the symptoms of his disease. When the Illinois Medical Cannabis Pilot Program (MCPP) was up and running, he applied in December, 2015. He had some technical problems with the fingerprinting. Since his fingers are curled up due to his disease, they were not able to get acceptable fingerprints. After 2 failed attempts, he had to go through an FBI background check. Let’s hope that none of this will be necessary in the near future for others applying to the MCPP. As a result, Barry didn’t get his card until March, 2016. Since there were not many dispensaries open in southern Illinois, Barry was very limited to a choice of dispensary. He started at Harbory in Marion, IL, which was a 3 hour drive round trip. Then, he transferred to HCI Alternatives in Collinsville which was a 2 hour drive round trip. Just recently, The Clinic Effingham opened. It takes less than an hour round trip and Barry loves the staff there, so he has found his “medical cannabis home.”
Fellow cannabis activist and friend, David Kurfman, just started working at The Clinic Effingham. I wrote 2 posts about his success with medical cannabis. Here are the first and second link to his success story!
Barry uses a vaporizer which is modified to include a straw for easy access. Becky showed it to me during our video chat. I have been told many times that a vaporizer is much, much better than smoking. One day I will try it! Barry’s preferred strain is G6. He uses flower as well as wax and shatter. He does have some muscle spasticity which is somewhat alleviated by medical cannabis. Thankfully, he is in no pain. What the medical cannabis does more than any other medicine is maintain the integrity of his motor neurons. The death of the motor neurons leads to muscular atrophy which eventually leads to death.
Barry Coughlin is quite the celebrity. As one of the longest living ALS survivors, he has been featured in many publications. He is a “medical miracle.” He is a writer as well. He has already written one book and is currently working on his second. He writes an inspirational column for his local newspaper, Devonian. Now, when I tell you that Barry is a writer, there is something you need to know. Barry types every single word he writes. It takes him an hour to type 250 words…yup…you read that right!!! He was very proud to tell me that he has written 54,000 words! He also wanted me to know that he has been using a computer since 1984.
So, the next time you start complaining about your life, just think about the struggles that Barry Coughlin overcomes every single day of his life. He is truly an inspiration to us all!
Here is a letter that Barry wrote 7 years ago:
The Luckiest Man on the Face of the Earth
Those are the words of Hall of Fame baseball player Lou Gehrig in his farewell speech at Yankee Stadium on July 4, 1939. After 17 years of record setting baseball, he was forced into retirement by the one opponent he could not defeat, ALS. If someone would have told me when I was playing for the Yankees in Little League that I would be just like Lou Gehrig some day, I would have been thrilled. Now at age 45, I would have to describe our commonality as more rewarding than thrilling.
For the past few years I have taken the opportunity to somehow put a positive spin on the nasty curveball that is ALS on the anniversary of my diagnosis, June 11, 2001. Gehrig was nicknamed “The Iron Horse” for his durability and playing in over 2000 consecutive games, but he lasted only two years after his farewell speech. This year marks my eighth anniversary making me an Iron Horse of a different sort.
Although eight years of ALS has left me more like a quadriplegic than a world-class athlete, it has turned me into a humble man just like Lou Gehrig, and that is not so bad. While I will never experience the fame and fortune of being a professional baseball player, ALS has opened the door to opportunities previously unknown and has uncovered the meaning of family and friendship. With every year, my body continues to deteriorate, but my mind grows in understanding the meaning of life, love, and happiness, making me “the luckiest man on the face of the earth”.
As always, I LOVE to read your thoughts and comments on my post.
I’ve written a series of posts about medical marijuana. If you want to read more you can click on the “Medical Marijuana” tag at the top of my page.
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