Family walks to fight ALS in dad's memory
A few years ago, people everywhere were posting videos of themselves dumping freezing water over their heads and calling out their social media followers to take the Ice Bucket Challenge.
The movement in the summer of 2014 put amyotrophic lateral sclerosis at the top of our newsfeeds and into the headlines, helping to raise awareness and about $115 million for research into the degenerative condition more commonly known as Lou Gehrig's disease.
The videos and attention, though, have faded and still amyotrophic lateral sclerosis continues, uncurable and imprisoning its victims in their own bodies.
The disease creeps in so softly that sufferers might not even notice the early symptoms: a little weakness or a few unexplained falls, a loss of dexterity that makes holding a pen or picking up a phone an unexpected challenge.
Doctors will rule out other potential causes for the symptoms, leaving a diagnosis of ALS and a limited time before the disease kills motor neurons that control voluntary muscle movement such as the ability to walk, talk, eat and breathe. Paralysis is inevitable, even as a patient's senses and cognitive abilities remain unharmed.
John Clemens had just 13 months from his diagnosis in 2015 until ALS shut down his body - 13 months to spend with family and friends. Thirteen months that would inspire his loved ones to continue fighting even when he couldn't, to try to help give the next family facing an ALS diagnosis a little more time and a little more hope.
On Saturday, June 2, his daughter, Allison Clemens of Lincolnshire, will walk with those who knew and loved John in the Walk to Defeat ALS, organized by the ALS Association and its Greater Chicago Chapter.
The walk starts at 10 a.m. at Cantigny Park, 1S151 Winfield Road, Wheaton. But first, she shares some insight into her family's battle with the disease.
Q. Who inspires you to walk?
A. My dad inspires me. The first year we participated, 2015, it was in his honor; since his passing in 2016, we now walk in his memory.
Q. How have you been affected by ALS?
A. It was a disease I had heard about through the Ice Bucket Challenge, but one I did not know too much about until my father's diagnosis in February 2015.
He had been having mobility issues for several months and underwent a whole host of tests, all which came back negative.
Ultimately, my dad was referred to a specialist and was given the diagnosis of ALS, as a diagnosis of exclusion in that they excluded everything else it could have been.
He continued to decline over the next months, with increasing assistance provided through the ALS Association and my mother and family members. My father passed away in March, 2016, 13 months after his official diagnosis.
Q. What was the most difficult thing about seeing a family member with ALS?
A. To be blunt, it is a horrible and devastating disease, especially for those suffering from it, but also for their caregivers and loved ones. It was so difficult to see my father slowly lose his independence and functioning, all the while fully understanding what was happening to him.
The difficult aspect of this disease is that while there is a plethora of research to find a way to slow or cure this disease, a diagnosis made today is a terminal diagnosis.
Q. What might surprise people about the experience?
A. While it is much more known today, it was a very isolating experience. I found not many people understood the gravity of it.
While the progression of disease varies person to person, the changes are very evident and drastic.
Q. What have you learned through your experience?
A. It feels very humbling to continue contributing to the ALS Association, as it was so helpful and caring throughout my dad's disease. And, of course, I love feeling that I am honoring my dad and continuing to raise awareness. It feels special that he was with us for our first walk in 2015, and was able to see all of the participants and individuals who are fundraising and working to find a cure.
Q. What support have you received?
A. The ALS Association provided an exemplary amount of support once my dad was diagnosed. It provided equipment at home, such as a wheelchair, walker, breathing machine, tube feeds, and a special reclining chair.
Members led a support group that my parents attended to meet other couples and families who were fighting this disease together. All the amazing staff who work with the ALS Association were so compassionate throughout my dad's battle, as well as after his passing.
Q. How can readers donate to your fundraising efforts?
A. On the ALS website, alsa.org, there is a link for the Greater Chicago Area walk on Saturday, June 2, at Cantigny Park. Readers are able to donate to the walk in general, or to a specific team. It all goes to the same place.
If you go
What: Walk to Defeat ALS
Why: Proceeds help fund the ALS Association's support of research and services for ALS sufferers
When: Check-in begins at 8 a.m. Saturday, June 2; walk begins at 10 a.m.
Where: Cantigny Park, 1S151 Winfield Road, Wheaton
Cost: Fundraising encouraged
Info: webchicago.alsa.org