Empathy comes with truly knowing what it feels like to walk in someone else’s shoes, and Michelle Keating’s roles as a multiple sclerosis-certified nurse and founder of the nonprofit MS Bright Spots of Hope are all the more effective because she was diagnosed herself with multiple sclerosis when she was just 25 years old.
A St. Louis native, Keating retired two years ago from Mercy St. Louis, where she had worked for decades, most recently as a nurse navigator in Mercy’s Cancer Information Center, located in the David C. Pratt Cancer Center.
She was recently honored with the 2020 Nightingale Award, presented in honor of the 200th anniversary of Florence Nightingale’s birth by EMD Serono, which is engaged in the discovery, research and development of medicines for patients with difficult to treat diseases, and the International Organization of Multiple Sclerosis Nurses, the only international organization focusing solely on the needs and goals of professional nurses who care for people with multiple sclerosis.
The two organizations are celebrating how nurses light the way to health and wellness even in the face of chronic illness, and presented the award to recognize special accomplishments in MS nursing, for which Keating, as one of 10 award recipients, is a shining example.
Keating had been working as a nurse for a few years when she was diagnosed with MS in 1981. At first, that didn’t change her career, but in 1991, she moved into patient education in the Cancer Information Center at Mercy.
With 2020 designated by the World Health Organization as the International Year of the Nurse and the Midwife, also in recognition of Nightingale’s birthday, it seemed like the perfect time to highlight the accomplishment’s and challenges faced by a nurse who has dedicated her life to helping others.
Inspired by her own love of exercising, Keating recently came up with the idea for the Bright Spots Cycling Experience, in collaboration with Angletech, a recumbent and adaptive bicycle outfitter in Colorado Springs that specializes in assisting riders with physical limitations. The cycling adventure is designed specifically for people with MS, enabling them to safely try a new outdoor fitness activity with their support partners.
Keating took the time to talk with Gazelle about her own MS diagnosis, her career, her mission to continue helping others, and the exciting biking experience she has planned for herself and others who are living with MS.
How has relapsing-remitting MS effected you? Gratefully, I have not had a relapse in 11 years, which is remarkable considering I was in the hospital for relapses in 2000, 2003, 2005, 2007 and 2009. Currently, my disability relates to damage from years ago. I walk with two crutches and have braces (ankle foot orthotic) on both legs, bowel and bladder issues, spasticity in my legs and mild fatigue.
How do you feel your own experience has helped you when speaking with and caring for patients who also have MS? Because I “get” it … from the fatigue and spasticity and bowel and bladder issues, which don’t show to others, to the mobility challenges (that do show to others), which can be very disabling, and the repeated rehab that is needed. But as a nurse, I have been able to learn about the disease, managing symptoms and treatments, the role of wellness and resources, and share that with others. In addition, my smiling face and positive attitude have been a source of inspiration to others and I feel humbled and grateful for that opportunity.
Have treatments improved since you were first diagnosed? Absolutely! I was not able to take a disease-modifying drug until 1993, when the first one was marketed. Now, there are 19 treatments to help slow the disease process, reduce disability and lessen brain damage as measured on an MRI. That means hope for the newly diagnosed and those who have been living with MS for some time.
When did you start MS Bright Spots of Hope? In 2016. I am a registered nurse with an oncology nurse certification and a multiple sclerosis nurse certification. My career highlights include health education and counseling for all types of patients, chemotherapy and oncology care, injection training for MS disease-modifying drugs, and provision of emotional and medical support by telephone for patients with MS for over 10 years. My nursing accomplishments include journal publication, faculty at professional meetings, development and review of professional and patient literature, training for health professionals, and speaker for nurse, physician and patient programs. In recent years, I have created novel programs for patients focusing on “hope in MS.” These include MS Evening of Hope, Many Steps Toward Hope, Hope for Better Bladder Control and Creative Art for MS Cruisers. In 2016, my professional and personal experience, and passionate efforts propelled me to establish MS Bright Spots of Hope as a nonprofit, whose mission is to educate, empower, spark creativity and enhance wellness for the MS community and broader community through engaging programs featuring positive MS role models.
When did you first discover recumbent bikes, and how has it helped you with exercise and mobility? A friend showed me his when I was walking at a park near my home. But in 2014, on our annual fall vacation to Colorado, my husband and I tried a tandem bike for the first time. I went to a local bike store the next year to check out a recumbent trike myself. In August, I was able to find a used trike, and I bought it. I fell in love with this form of exercise! My determination led to increased effort, and two years ago, I traded my used trike for my current “candy red mustang” that has power assist for the hills. I bike most days, even when it is down to about 32 degrees! I also do some strength training and walking. My most recent physical therapy evaluation demonstrated my walking speed and endurance was the best ever in the past 10 years!
How did the bicycling adventure evolve? When my husband and I were visiting Colorado Springs in October 2015, we looked to rent a tandem from a bike shop, and we found Angletech. The company not only let us use a novel tandem, but introduced us to adaptive cycles. When we visited Colorado Springs again, we visited Angletech, and I tried the power assist trike. In September 2019, I visited Angletech again to ride and discuss partnering with them to introduce adaptive cycling to others with MS. Earlier this year, I learned about EMD Serono’s partnership with IOMSN to celebrate how nurses light the way to health and wellness even in the face of chronic illness. I discussed the project with my board and applied for the Nightingale Grant to help fund the effort.
For the bicycling trip to Colorado Springs, each participant will visit Angletech’s showroom to be fitted for a recumbent or other adaptive bicycle, which they will then take on a free “test drive” on trails throughout the Colorado Springs area with a variety of scenic paths for every level of mobility and endurance. Keating’s hope is that the experience will inspire participants to begin exploring alternate modes of mobility, exercise and outdoor activities that they may be holding back from enjoying due to their MS challenges. The Nightingale Award will help fund the trip’s transportation, meals and lodging for 16 people, including seven MS patients, their travel partners, and Keating and her fellow organizers.
The adventure was initially scheduled to take place in September, but due to the coronavirus pandemic, it has been postponed to Sept. 23 to 26, 2021. Participants will be chosen through a random lottery that will be open to interested MS patients in the St. Louis area. For more information or to apply, visit msbrightspotsofhope.org.
Keating said for 10 years, she relied extensively on a scooter, and was not able to walk very well. In 2011, she began strength training and increasing her exercise habits. That effort, plus effective treatments and the use of medicines known to enhance mobility, helped her regain control of her health, mobility and social opportunities in a way that she hopes she can help others with MS achieve.
Photos courtesy of Michelle Keating
Michelle is an inspiring woman. Thank you for publishing this article and spreading the word about the opportunities for biking for those living with MS.