As a marketer, I love goals and a good campaign; especially one for such an important Quest. So, I was honored to share why I feel it’s important to continue moving your body after diagnosis to inspire participation in Augie’s Quest “Move In May For ALS” as part of ALS awareness next month.
A little over a year ago, I was perfectly healthy and in great physical shape…until I noticed progressive weakness in my right leg during my runs. Three months later, I was diagnosed with sporadic, limb onset, mostly upper motor neuron ALS.
As a lifetime athlete…prior to diagnosis, movement and exercise always made me feel happy, healthy and in good spirits! I was a pre-elite gymnast in my youth, NCAA collegiate springboard diver, and as an adult among other things an avid snowboarder, surfer girl and endurance athlete – having run the Chicago Marathon competitively for 21 straight years since 2000. I ran my last Chicago Marathon virtually during the pandemic in 2020.
So, regardless of the surreal, shocking and sudden life changing news l received last April, right from the start I knew my ALS journey was going to include modified forms of exercise for as long as possible. Because my body always responded well to movement. Despite all of the chatter and debate about exactly how much exercise is advised for ALS patients, I knew that no one’s ALS journey or baseline is the same. So, why should exercise and movement recommendation be so generic? I decided it was really important to continue to listen to my body moving forward and apply my athletic discipline and training experience to develop a new wellness plan to stay strong both mentally and physically.
I quickly put together an A-Team of amazing of friends, doctors, physical therapists, a flexologist, and massage therapist. I also expanded my prayer circle as well. Even though some days it is a huge victory just to get out of bed in the morning, I go to Stretch Lab twice a week, physical therapy, occupational therapy, massage, mani pedis and weekly visits to the Drybar as a treat. All of these activates keep me motivated and moving. On the weekends, I really love to train on my Catrike (recumbent bike) with friends.
Post diagnosis, just like in good health, continuing to have goals is so important to stay in a positive mindset and to have some fun when things get tough. It also helps me focus on what I can still do instead of dwelling on all of the things this disease has taken from me. Last October, the Chicago Marathon race director worked with me to complete most of the 2021 race virtually on a push rim bike. Then, I was able to complete a 5k on race day with my walker to earn my medal and keep my 22 year marathon legacy runner tradition alive. I also just did my first Catrike 10k in March which was a blast! Believe me, the sense of accomplishment from these two events is right up there with qualifying for NCAA Nationals or the Boston Marathon.
At this point, I feel so Blessed to still have the ability to balance my wellness plan while continuing to run my Newport Beach based Marketing & PR Firm, California Marketing Concepts. I love working with all of my longtime, supportive clients – just like I love riding my Catrike on the boardwalk in Newport watching the sunset. I feel more like myself when I’m working and when I’m active. It gives me a much needed sense of accomplishment and puts me in a calm, meditative state like I used to feel during my long runs.
Some days are harder than others, and I realize I’m still relatively early in my ALS journey. But I’m trying every day to stay strong through movement. It’s never easy…ALS is the marathon challenge of my life. But, now more than ever it’s worth it to dig deep, still have Hope, positive goals and keep moving.
So, if you too need a positive goal to get moving – sign up today to participate in Augie’s Quest “Move In May For ALS”. As part of the campaign I’ll be doing the Prince Of Whales Marathon in Alaska on May 28th on my Catrike with my amazing new friend, Andrea Peet. Her story inspired me the night I was diagnosed last April when I needed to be brave. I can’t wait…!