ICS’s Rachael Stacom Talks MS at Wellness Symposium
A nonprofit organization founded in 2007, MS Hope for a Cure’s mission is to raise money to find a cure for MS and to support those individuals and their families living with the disease until a cure is found. During the online event, “Thinking Outside the Box: A New Approach to Wellness in MS,” Rachael and fellow presenter and medical psychologist David Rintell, Ed.D., spoke about self-management and quality of life for people with MS, as well as shared practical strategies for wellness.
Rachael, a multiple sclerosis-certified nurse practitioner with more than 20 years of experience working with people with MS, created ICS’ MS program, which has been designated an MS Society Partner in Care. Most recently, Rachael was recognized as a Hope Honoree by the National Multiple Sclerosis Society at the organization’s Dinner of Champions.
David, a medical psychologist, has more than 25 years of experience working with individuals, couples, and families living with MS. At Massachusetts General Hospital and Brigham and Womens’ Hospital in Boston, Dr. Rintell provided mental health care to children and adults with MS, while conducting research on the psychosocial impact of MS, mental health services for people with MS, and children with MS and their families.
MS and the impact of thinking
Both Rachael and David discussed how thinking can impact one’s life, and spoke about how an individual’s perspective on having MS can be integral to managing their condition on a daily basis and maintaining joy in life.
“We can experience a tree blossom and see it as a positive; we can see that tree blossom and see something negative,” said David. “There’s a lot of research that demonstrates how we think about our life experience has an impact on our physical health and mood.”
Living with MS
As part of their presentation, Rachael and David presented an image of a tree, bending due to strong wind gusts, but remaining in place. This, they said, illustrates how people with MS must be flexible in life.
“The tree is bending, as opposed to going against the wind,” Rachael said. “Flexibility in doing and thinking is important. Those with MS didn’t choose it, but we choose how to live with MS. This could also be true for the coronavirus pandemic. We didn’t choose for this to happen, but we can choose to live while it’s happening.”
MS and handling what can be controlled
Rachael and David further illustrated the importance of flexibility and impactful thinking for people living with MS by highlighting an exercise involving a box, where what can be controlled is placed inside the box, and what cannot remains outside of it.
They focused on two separate worksheets of “Pat,” a person diagnosed with MS. The first worksheet displayed items in and outside of the box before applying impactful thinking.
Several images, including a toilet, a person sitting on a couch, and a couple, were outside the box, due to Pat’s bladder and urination issues, social isolation as well as intimacy and sexuality complications.
“Once MS took his/her body over, it took over her life as well,” Rachael noted.
In the second worksheet, which highlights the result of Pat becoming more flexible and modifying his/her way of thinking, more images are inside the box or on the cusp, including the toilet and couple images.
Pat changed his/her thinking, and found a nurse practitioner with experience in sexual issues to address intimacy issues. Pat also decided that to avoid urination urges, he/she would use the bathroom earlier. In addition, the image of a person sitting in isolation on a couch from the first worksheet was replaced with a phone image on the second worksheet, all because Pat started calling family members, felt closer to people and eliminated isolation.
“Things were more in his/her control based on changes in thinking,” Rachael said.
“Pay attention to what your thoughts say to you,” David said. “If you change the doing, you can change the viewing.”
Questions surrounding MS
Asked about how people with MS can address personal challenges, especially during the COVID-19 crisis, David encouraged people to reflect on previous challenges and the solutions they discovered.
“People who have lived with MS know what it’s like to live with adversity and to overcome adversity,” David said. “Go back and say, what is in my toolbox?”
Another participant asked how one can engage family who are not supportive because they are overwhelmed themselves during the COVID-19 crisis.
Rachael noted that compassion and acknowledgement can go a long way. “Acknowledging that people are going through a lot, and saying, ‘I’m really sorry. It seems you have a lot going on and this is hard,’ I think that can go a long way. Depending on what you have on your plate, maybe you can also support them.”
To learn more about MS Hope for a Cure and to view the presentation, click here.
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The Independent is ICS’ official newsletter, featuring the latest stories around ICS, its members and staff, as well as news on what’s happening in the disability community at large.