Teri, thank you so much for your involvement. My husband is one of those afflicted with this disease and although we would rather not be in this “club” we have repeatedly said how llucky we are to have the Les Turner Foundation and Dr. Sadeeque at Northwestern to help us through this journey. Loved the music video! We have made mixed CD’s to thank our Walk for Life team members with music we enjoy and we definately will include Learning to Fall this year. Gratefully, Carol Weiler. carolweiler@comcast.net

Thanks Terri, WXRT, Les Turner Foundation & everyone working for ALS awareness!

My dad Russ had ALS & was part of early research 1963-66. Sadly, ALS took his body at age 46 in 1966, but it couldn’t take away his spirit or our hope. He was a warrior who never gave up and inspired the rest of us to keep going. In 1964 he offered himself for a pilot U.S. ALS research program as a living volunteer with hope that others might be spared or helped. I was and am so proud of what he did. Indeed, while there is not yet a cure, treatment, longevity, quality of life and support systems for those living with ALS today have improved considerably than what my dad then had available. But it remains a cruel, devastating & deadly disease. Muscles & nerves betray the body while the mind remains fully aware. The disease is still not yet fully understood, the cure elusive. However, there IS hope. We understand how it works and how to work with it a little more each year. Research, raising public awareness & funding DOES make a huge difference.

Thank you for all that each of you can do, whether you give your treasures, time or talent, or simply post information on social media. Someday we will win this battle…together.

— Katie A. Jones, Aurora, IL (BackbeatChicago@gmail.com)

Terri, in your original 05/09 blog, you issued an invitation to share our ALS stories:”…If you have an experience with ALS and would like to share, please do. I’d like to know and you might inspire some other folks. Our own profiles in courage…” So…

After I posted the short comment above on 05/11, I reviewed my longer original story and fretted over whether I should post it out of respect and protectiveness toward others affected by ALS. It’s not cheery fluff. ALS is not cheery. But my dad, who endured ALS for five years, from 1961-66, was indeed a Profile In Courage, a warrior who never gave up and inspired those around him to keep going in the face of all challenges. It is a sometimes distressing tale that I refuse to sugarcoat with polite “valiant battle” language. ALS is not polite or valiant. There is currently no cure for ALS, but that doesn’t mean that there is no hope. Things can get better through research, new treatments, ALS awareness and increasingly comprehensive support systems. In the 1960’s, ALS was still shrouded in mystery, little understood in medical circles, less so in general society. My dad was supported by our extended family, friends and coworkers who did everything they could to help, but all of us were making it up as we went along. If we had more resources, enlightened care-givers, more empathetic social structures and the direct support of such organizations as the Les Turner ALS Foundation, it would have made a big difference. Such things are now in place, for which I am deeply thankful.

May I share our journey with you?

Please meet my dad, Russ Jones. He struggled with this cruel, brutal and deadly disease for five excruciating years starting in 1961 – but it did not define him. It could never eradicate all he was through his life. I was eight years old when he first got sick at age 41. Before his ALS emerged, my dad was a strong, sturdy, active outdoorsman, and I was sure that he was secretly Superman. A totally devoted husband and father, he endlessly doted on me as the only child. He originally wanted a little boy but welcomed me with a perpetual delight that even stunned my mother. He never once told me I couldn’t do something because I was a girl, as parents often did in the 1950’s. He encouraged me to explore the diversity of life and follow my dreams. He was also a brilliant electronics/radio engineer and technological visionary who entranced me with “science fiction” tales in the 50’s, saying that we’d go to other planets and have computers we could hold in our hands when I grew up. (Since computers filled ROOMS at that time, some people thought his ideas were a bit far out there, along with his planets!) He often tucked a chocolate bar in his pocket protector next to his slide rule for me to find as he came in from work. One night in 1957, he hauled me (quite willingly) outside in my pajamas and cowboy boots to comb the starry sky hoping to see history’s first manmade satellite from Russia in orbit – Sputnik, a basketball-sized silver orb. We couldn’t see it, but we listened to its “beep-beep” telemetry on shortwave radio – pure magic (even if it was scary USSR magic in the middle of the Cold War). He later worked on the guidance systems for rockets and the U.S. Mercury manned space program. I was so proud of him. When I got a bit older, he told me more of his service in World War II as a U.S. Army sergeant vital to D-Day logistics. He also was among the first U.S. troops to witness the horrific remains and skeletal survivors of the Nazi Dachau concentration camp in Germany in 1945. The only time I saw my father cry before ALS was when he spoke of Dachau.

Dad’s ALS emerged quietly, innocuously. One day in church he suddenly was unable to get up from kneeling (that made me angry with God for a long time – not logical now, but true then). Then his legs suddenly gave out climbing stairs. Essentially, his muscles became unresponsive to directives from his brain. Thinking it was something relatively minor, he went to our family doctor, who had to deliver devastating news to my young mother. It was a dizzying series of specialists and hospitals after that, plus family care at home.

In the early 60s, ALS was little understood and treatment very basic, sometimes experimental. The healthcare system in general and even direct caregivers were sometimes clueless in how to deal with a still rare and confusing affliction. There was no family or social support system. For our family, that meant losing my dad’s income that had been our sole support, with my mom essentially becoming a single mom forced back into the workforce with a young child and a constant struggle to provide both a roof over our heads and adequate care for my dad, plus endless insurance battles. One hospital actually tossed him out over an insurance dispute, sending him home where we were not equipped to fully care for him.

Dad’s physical deterioration was incremental but steady, with motor functions shutting down first in one area of his body, then another. The nerves that are affected when one has ALS are the motor neurons that provide voluntary movements and muscle power. It conversely can trigger involuntary muscle movement like twitching. There are different types of muscles. With ALS, motor nerves that control mostly motion muscles like those in arms and legs are usually affected first, while involuntary muscles like those critical to the heart, lungs, digestive system and other organs are not affected. The senses of sight, hearing, taste and smell are not usually affected, and ALS normally does not diminish brain function. The body is slowly betrayed by atrophying nerves and muscles, while the person with ALS is fully aware of everything that is happening. ALS attacked Dad’s legs initially, which eventually confined him mostly to a wheelchair or bed. He increasingly could not get to the bathroom, or later predictably control his bladder or bowels, then not at all. He couldn’t dress, drink or feed himself and eventually just swallowing became extremely difficult, making it necessary to provide nourishment through baby foods, then tubes. He lost ability to speak. In 1964, much to my dad and mom’s credit under dire circumstances and substantial risk and pain, my dad volunteered to go to Walter Reed Army Hospital in D.C. to be a living research subject so that others might be spared or helped. (Through him and other volunteers, we do now understand ALS better.) He passed away from respiratory failure in 1966, my forever hero.

As mentioned, ALS’ physical devastation is the most obvious, but likely the most painful cruelty of ALS and some other progressive neurodegenerative diseases is that the patient’s brain commonly remains fully conscious and aware of a failing body and is not able to do anything about it. It is brutal not only to one’s body, but may destroy sense of self/self esteem, hope and faith. The person has vivid awareness and often intense anger over their pain and that of their loved ones, the stripping away of basic human dignities, an impersonal healthcare system, insurance or financial struggles, and even sometimes rude comments by strangers who just don’t understand. I remember pushing my dad in a wheelchair through the Hines Veterans’ Hospital grounds in suburban Chicago when a stranger stopped us and blurted out “What’s WRONG with him?” – like he wasn’t even there. I suppose it was well-intentioned curiosity, but I wanted to cry and scream back, “He’s my daddy and there’s nothing “WRONG” with him!” I stayed silent, but I looked at my dad and there were tears rolling uncontrollably down his cheeks, tears he could not wipe away, tears left for a 10 year-old lost little girl who didn’t understand why her daddy got sick. I didn’t understand it when he died two years later in 1966 either. My mother was a saint for negotiating our remaining family safely through a very difficult and unpredictable maze of surreal experience while upholding my dad’s dignity and hope, and providing me with a great childhood despite her pain and our superficial limitations. I love you, Mom, with eternal gratitude.

Even now, almost 50 years later, there is no traceable reason my dad contracted ALS, and there is no conclusive cause known. I recently learned that ALS may now be considered in some cases as possibly military related due to a higher number of service members in certain combat zones contracting it compared to the general population, but I have yet to extensively research this. Environmental and chemical factors are also being examined. I confess that I worried through my early and mid-life that I might also get ALS, even though it is rarely heredity. I’m still at risk even in later age, however highly remote. There’s a genetic test available, but I don’t want to know. I don’t have kids, and frankly am grateful that I won’t pass any risk to anyone else. ALS scares me very deeply, then and now.

This is a rough story to read, for which I apologize. I did say that I would not sugarcoat things. It’s not cheery fluff. If you’re not familiar with ALS, I wanted you to know – to feel – how very difficult and devastating ALS can be. If you or a loved one is living with ALS, I wanted you to know that you’re not alone. My dad was a warrior. While ALS compromised his body, his mind remained determined and his spirit strong. He never gave up. I’m so proud of him, still and always. There are many others out there like him, with whom I will always feel kinship. I wanted you to know that things can get better. While there is not yet a cure, treatment, longevity, quality of life and support systems for those living with ALS today have improved considerably than what my dad then had available. That’s due to dedicated scientific research backed by support organizations focused not just on a disease but on supporting the very human beings it affects and educating the public. Back when my family struggled with ALS, research was sparse, treatment protocol was fuzzy, education was negligible, and there really were no family support systems. It IS better now!! And yes, continued research and support needs funding. But that doesn’t only mean dollars. There are lots of other ways to help, too – by volunteering through support organizations, attending special events or just posting information on social media. Thank you for whatever you do.

Thanks to all of you who work with ALS daily as researchers, caregivers, volunteers and educators. I’d like to recognize and thank WXRT for its long and active commitment to ALS awareness, with a special hug for tireless XRT DJs Terri Hemmert and Lin Brehmer, and a salute to the late Bandstand guru Dick Clark for his support through the years. Your work matters.

Someday we shall win this fight…together.

— Katie A. Jones, Aurora, IL (BackbeatChicago@gmail.com)