Bored and frustrated with the continued COVID-19 lockdown restrictions? Pat Quinn, the Co-Founder of the ALS Ice Bucket Challenge who was diagnosed with the deadly ALS in 2013, feels your pain, but only for a moment.
After the moment has passed, the only way to deal with adversity, Quinn tells the Irish Voice, is to face it head-on with determination.
“This isn't the first time and it won't be the last time life challenges us all. We must prepare our minds to be mentally strong enough to deal with anything thrown our way,” Quinn, 37, said during a Monday afternoon interview conducted via Facebook Messenger, which he uses thanks to eye gaze technology and a large computer screen.
Simply put, there is no one better equipped to offer advice on coping with a life-changing pandemic than Quinn, whose world was upended when he was diagnosed with ALS in February of 2013. There’s no cure for ALS and hardly any treatments, but that doesn’t phase the first-generation Irish American who continues to push for medical advancements while educating and inspiring a countless number of people through his public speaking and fundraising efforts like the Ice Bucket Challenge, which he organized in 2014 with his friend and fellow ALS campaigner Pete Frates, who passed away from the disease last December.
Quinn, confined to a wheelchair and nourished via feeding tube, lives in an apartment in Yonkers – his father Patrick, a native of Newry, Co. Down is his primary caregiver. He fully understands limits on movement and social contact thanks to the disease and says that the current pause on the most activity should be used for personal growth.
“Social isolation is difficult. Not seeing family and friends, it can be hard for us. This is the time to work on yourself. Read more, write something, make plans for the future, create goals, and if you really want -- watch Tiger King on Netflix. It's nuts!” Quinn says.
“But this will pass. Let's be the best version of ourselves possible when we all come together again.”
Given his weakened immune system, Quinn must be especially vigilant to ensure he doesn’t become infected with the coronavirus.
“In a weird way, ALS has prepared me quite well for this time of social isolation. I always have to be careful with who I come in contact with or avoid anyone who might be sick. My immune system is so compromised that I can't risk catching anything, but the coronavirus has brought extreme caution to the situation. I haven't had any visitors, which is very difficult,” he says.
“I love seeing people and I'm not just talking about having beers with the boys on Fridays. The hardest part has not been seeing my nieces and nephews. My cousin Debbie and her twins, Ashley and Taylor, drop a weekly bag of goodies, so I know there is a light at the end of this thing. It's the little things that keep me going. Those little gifts from those two little beauties, it's everything during a time like this.”
The race for a vaccine to combat COVID-19 has been an eye-opener for Quinn, who for years has been advocating for new therapies and a hoped-for cure for ALS. Many COVID vaccine trials are ongoing with the goal of securing one as soon as possible. Quinn is all on board for that, but wonders why similar urgency doesn’t exist for ALS research.
“I understand the need to figure out COVID. It’s taken the world by storm and deserves the attention. However, the response from the government with this ‘whatever it takes’ support to find a vaccine is a slap in the face to someone like myself fighting a disease every day that still has no cure or significant treatment options,” Quinn says.
“Both COVID and ALS are killing people every day and that is unacceptable. What I am saying is this -- the response to COVID proves our system is severely flawed! The long, drawn-out ways of the FDA and clinical trials in this country can, in fact, be sped up with the right amount of public outcry and political pressure. After this crazy time in the history of our world, we should not look to go back to being ‘normal,’ we should be learning from this and growing from it.”
Treatments for ALS are extremely limited, and progress comes ever so slowly. Quinn says there are a few things in the pipeline and a stem cell treatment in the last phase of a clinical trial process.
“But who knows in what type of patient it will work. I shouldn't downplay it because if it were to become available in my lifetime, I would be all over it!” he says.
“I just can't put all my eggs in one basket like some other patients do that haven't been in this battle as long as I have. It's weird because I am still a young man, but when it comes to ALS, I'm a seasoned veteran at this point.”
Quinn’s courage and steadfastness is a true inspiration in these tough times. And you won’t catch him complaining, ever.
“I'm very lucky to still be here, not just hanging on. I love my life!” he says.
Once the coronavirus crisis passes, Quinn is looking forward to some live Irish music for starters.
“I need the madness of a Narrowbacks show in the back of Rory Dolan’s. That is when I'll know we are back!” he says.