February 23, 2022 – West Bend, WI – Despite all that ALS has taken from me, I still try to maintain a positive attitude and try to enjoy each day. I have much to be thankful for. Instead of dwelling on things I can no longer do, I try to focus my time and energy on things I can still do.
Mark Kandel on recumbent bike; photo courtesy Mark Kandel
I am still breathing on my own, swallowing, talking (however, my voice is hoarse & raspy) and walking with the assistance of a walker.
I enjoy biking and, although I can no longer ride a road bike, I purchased a three-wheel recumbent bike five years ago that I use several times a week in the summer to maintain muscle strength in my legs. In winter, I use a stationary bike. I feel very blessed that I can still do as much as I am, given that this is my tenth year since symptom onset.
I can still practice the trumpet for 30 minutes every other day and taught myself how to play the piano three years ago. Since I am unable to play the flugelhorn/trumpet in the band as in the past (pre-ALS), I now direct the River City Blaskapelle, West Bend’s own German community band.
I thank the Lord for every day that he has given me to experience.
I am very blessed to have a very supportive family, especially my wife, Karen and my brother, Curt. In addition to being my caregiver, my wife works full time and keeps a meticulous house and yard. I wouldn’t be able to make this journey without all of her love, patience, support and care. My brother, Curt, is also the team captain of Mark’s Marchers, our team for the annual Walk to Defeat ALS in Milwaukee. He has devoted an abundance of time and raised thousands of dollars for our local ALS Chapter. His love and support are very precious. I am truly blessed to have both of them in my life.
Every day, I do stretching exercises to maintain mobility. I also perform daily breathing exercises (inspiratory and expiratory) to maintain respiratory muscle strength. I have various breathing devices that I use. They include: EMST 150, Respironics Inspiratory Muscle Trainer, Accapella Choice Flutter Valve, Power Lung device and a Spirometer. I rotate the use all of these devices with the exception of the EMST 150 which I use on a daily basis.
I feel you have to be your own advocate and do what you think is in your best interest to fight this devastating disease. Yes, it is a tough diagnosis to swallow and yes, my regimen is a lot of work, however, life is precious, and I feel I owe it to myself and my family and friends to fight this disease with everything I’ve got.
The most important thing is to keep a positive attitude and enjoy each day that the Lord has given you and keep fighting.
The Lord doesn’t want us to give up. Life is too precious to throw in the towel. He gives us challenges in life, but He is with us every step of the way. You can still lead a productive life even with an ALS diagnosis.
I am living proof.
Mark Kandel began experiencing indicator symptoms of ALS in 2011, falling, difficulty walking, loss of balance, spasticity in his right leg, and foot drop. In October of 2014, at age 59, he received his ALS Diagnosis at Mayo Clinic in Rochester, MN.
Mark is now “66 years young” and attends the Froedtert Clinic working with Dr. Dominic Fee.
Despite the abilities he’s lost, Mark’s focus is on the present and what he is still able to do to “keep fighting.”