Meet MS Warrior Rosemarie Collopy

Like most Americans, Rosemarie (Roe) Collopy spent December 26, 1991 shopping after-Christmas sales and returning some gifts. When the day started, she had numbness in her left hand. As the day wore on, her left foot also became numb and crept all the way up her leg by the end of the day. She chalked it up to holiday stress and being a new mother to her daughter, Krista. But when she woke up the next morning, the entire left side of her body was numb.

Thinking she had pinched a nerve, Roe called a chiropractor. When she explained the symptoms, he was concerned with the numbness being in three regions of her body and recommended immediately going to the ER or see a neurologist.

Roe and her husband, Tom, thumbed through the Yellow Pages looking for a neurologist. It was difficult because of holiday closures, but they did manage to find a general neurologist who could see her that day. Based on clinical evidence and office examination, the neurologist knew what the problem was right away. Roe was not prepared for what she was about to hear. Her signature curly red hair stood straight on end when the doctor said the words, “You have Multiple Sclerosis.” How can this be, she thought? She was an avid exerciser. She rode her bike to work every day, which was a strenuous 30-mile round trip journey. One year prior, she and Tom rode the RAGBRAI 550-mile cycling event across Iowa. She was also an avid downhill skier. She was a picture of perfect health.

The general neurologist referred her to the local MS Center where Roe had a spinal tap. The MS Center claimed there was nothing wrong with her test. There was no indication of MS. Additionally, her numbness seemed to get better. By summer of 1992, however, she started falling because her balance was off. And fatigue forced her to take naps during lunch breaks at her job where she worked as a dental assistant.

Roe went to see a different general neurologist who reviewed her spinal tap. He did not agree with the MS Center’s spinal tap analysis and said she most certainly did have MS. In the early 90’s only one oligoclonal band was necessary to diagnose MS. The neurologist identified ten bands on her spinal tap assay and grimly defined those results as being really bad.

Rosemarie and Krista

Roe was distraught and became a couch potato. Her fatigue became so debilitating that sometimes coworkers would cover her patients so she could rest. Tom took control of running the household, although Roe jokes she did not object to Tom doing all the cleaning. But what seriously frustrated and saddened her the most was that she could not be the mother she needed or wanted to be to baby Krista.

Tom and Roe at Bike MS 1998

Her balance got worse and Lhermitte’s Sign made her body shake badly. Roe started using crutches attached to her forearms to prevent falling. She also used a scooter for days that required covering long distance. The once highly active athlete decided to pack up all of her sporting memories into a “Virtual Fond Memory Box.” These memories were filed away as things she can happily look back on but can no longer do.

Roe and Tom rode Bike MS together in 1989, two years before diagnosis. But now that the disease actually lived in their household, they became staunch advocates and worked hard at raising funds for a cure. Tom rode every year while Roe and Krista took the sidelines as the cheering squad. Roe took out her frustration at not being able to ride so she became an UBER volunteer at Bike MS. She eventually took over the finish line with her own orange tent, a bullhorn, noisemakers and handmade signs to encourage the riders. She knew every perennial rider and every team. And at just 5 years old, Krista started riding parts of the route on a special bike attached to her father’s bike.

“Once an athlete, always an athlete.” Roe loved being a cheerleader at Bike MS but it was time to challenge her disease. She took careful stock of her Virtual Fond Memory Box and looked at things she could do but with adaptations. Roe used to swim and decided to give it a go because she figured water sports would be good for a person with heat intolerance.

Her first day at the local pool was a shocking moment when she realized she could not even swim a full lap. Roe was embarrassed in her swim cap and bathing suit acting like an athlete while everyone else passed her by swimming multiple laps. Roe has a great deal of stick-to-itiveness. She decided to build her muscles and endurance through pool walking. She eventually graduated to swimming laps, but was worried about doing too much. Through trial and error, she eventually found the sweet spot and now knows 20 minutes is the perfect duration for swimming. It is long enough to get a great aerobic workout but not too strenuous to wipe her out for the whole day or cause terrible spasticity in her feet and legs.

Another exercise Roe added was yoga. She is tall and has lean arms and legs but spasticity shortens her muscles into tight knots. Yoga helps to stretch out the tight spots and has improved her balance. Fluid movements coupled with breathing has helped tremendously with body acceptance. There are no judgments or comparisons in yoga.

Rosemarie at Kessler Yoga

Just when things seemed to be getting better, Tom and Roe’s life together was dealt another terrible blow: Tom was diagnosed with a brain tumor in March 2000. It was very aggressive and he passed away just seven months later. Roe and 9-year old Krista were absolutely devastated.

Rosemarie taking a break at racquetball

How does a little girl cope with the death of her daddy? She does what she can. She seemingly matured overnight and began to take care of Roe by making sure her mom was doing well before she left for school each morning. And Krista continued the family tradition of Bike MS. In 2001, at the age of 10, she created her own team, “Krista’s Crew.” She has been Team Captain for 19 years! It is very much as important a connection to Roe as it is to Tom. [Aside: Krista holds the record for youngest Team Captain, a record that will never be broken because the new rules state you must be at least 16-years old to participate.]

Through swimming and yoga, Roe has built strength and improved her balance such that she no longer needs crutches for walking or a scooter for getting around. An added bonus…. She was also able to take racquetball out of her Virtual Fond Memory Box. She says racquetball is an equally important sport for her because of the social aspect. She takes pride in having stamina to keep up with friends.

Perhaps Roe’s proudest sporting comeback was to cycle again. Last 2019 was her 30th anniversary of being involved with Bike MS. She borrowed a bike from a friend and trained in secret. At the starting line of Bike MS, she surprised Krista by showing up wearing full cycling attire including a jersey that said, “I ride with MS.” It was very emotional with lots of tears. The plan was to ride 15 miles together to the Qrst rest stop, and then Roe would take the support vehicle back to the start. The whole ride Krista took care of her mom like when she was a kid. She Qxed a gear that was not shifting properly and kept Roe’s spirits high with loving words of encouragement. When they pulled into the rest stop, there was another outburst of raw emotion and tears. It was an inspiring story that all riders used to motivate themselves when the going got tough that day.

Rosemarie and Krista at Bike MS 2019

Roe is a legacy member of Run A Myelin My Shoes. In 2018, she was a virtual teammate and swam for her event. She joined the team in Richmond the following year and walked the 8K with her sister and other MS Warriors. She continues to walk (especially important now that pools are closed because of the pandemic) and has been very involved with the RAMMS 5 for 5. She uses RAMMS as motivation for her rigorous walking program. Not only has her distance and speed increased this summer but she also feels strong! As a result, Roe has added a new sport to her repertoire and perhaps her Virtual Fond Memory Box can be revamped to simply be a Box of Can Do’s!