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Support Stories — Gary & Joli: Parents of an Adult Child with MS

Gary and Joli’s daughter Reese was diagnosed in January of 2015, when she was 23 years old.

Reese had been experiencing numbness in her right leg and torso for a couple of months, and they decided to have their family doctor’s office check things out.

“The physician assistant immediately thought of MS,” said Gary, “so she referred Reese to a Neurologist who scheduled her for an MRI of her brain and brain stem.” About two hours later, the Neurologist called to say that Reese indeed had MS.

“We were devastated,” said Joli. “We had watched Gary’s Aunt deteriorate over the years with MS that was diagnosed in the 60s, before effective treatment existed. She was wheelchair-bound and could not do anything for herself, so we feared that this would be Reese’s future as well.”

Joli and Gary quickly began considering the many fears parents experience after a child’s diagnosis with a chronic illness, fears that were compounded by what they already knew of their experience with Gary’s aunt.

“Our biggest challenges were overcoming the fear that she would not be able to live a ‘normal’ life, and ensuring that we are there for her when and if she needs us,” said Joli.

“At the time of Reese’s diagnosis, my brother’s step-daughter was being treated for a very rare neurological disease at the University of Colorado Anschutz Medical Campus,” said Joli. “He suggested that Reese call them for an appointment. She did and was seen quickly. After that first visit, we knew that she was in good hands and on an effective treatment.”

Shortly after that initial visit, Reese became involved with the Rocky Mountain MS Center and found support and resources needed to navigate this disease.

Together, the family began exploring the current state of MS care and research, and educating themselves on exactly what an MS diagnosis means today. This led them, among other things, to the MS Center’s MS 101 program.

Ultimately, they learned together that an MS diagnosis is not what it used to be. “I’m confident that the treatments and medications will only continue to improve with time thanks to research and providers treating this disease,” says Gary, “and that she’ll always have the best options for care available to her as she goes through life living with MS.”

“We’ve had wonderful support from providers, family and friends,” says Gary. “Just asking how she is doing reminds us that they care.”

“The hardest conversations were the ones that occurred right after her diagnosis,” says Gary. “It was very painful, but Reese is very open to talking about the disease, her treatments, and how she’s doing. We are open to any conversation she wants to have regarding her MS.”

As parents of a young adult, Gary and Joli found themselves in a peculiar situation — wanting to do everything they can to help their daughter, but also understanding Reese is the one in charge of her own care. “Reese has taken control of her care by working closely with her providers along with pursuing as healthy a lifestyle as she can,” says Joli.

Because Reese is so dedicated to ensuring that she takes good care of herself to minimize symptoms and progression as much as she can, her life is fairly normal.

“Yes, she does live with symptoms,” says Gary, “but they don’t currently affect her activities significantly. She went through a period when she experienced severe symptoms like optic neuritis and vertigo, but fortunately those have all subsided.”

She exercises regularly and tries to eat very nutritious foods and over the years, this lifestyle seems to have helped tremendously — along with, of course, routine visits with her MS care team and strict adherence to the disease modifying therapy (DMT) infusions they’ve prescribed.

“That being said, we let her know that we are here for her, check on how she’s doing,” says Joli, “but really, due to the amazing treatment that she’s receiving at the MS Center, she is leading a very normal, active life.”

“Over the years, because we’ve seen that her lifestyle,” said Gary, “for the most part has been ‘normal,’ we’ve lost a lot of the fear that we had at first. We are still cautious, but are comforted tremendously that MS is much more treatable than before.”

“We see that now, but we’ve still had to work on changing our mindset about that,” explains Joli. “She is very blessed, as are we, to be in the hands of these experts.”

Because Reese is so independent and very active in her treatment and trying to do all she can personally to maintain a healthy lifestyle, Gary and Joli don’t find themselves needing to intervene or get involved in Reese’s care very much. “We take our cues from her as to how much help she may need,” says Joli.

In the end, for parents of an independent young adult with MS, the key to navigating their role is communication.

“The hardest conversations were the ones that occurred right after her diagnosis,” says Gary. “It was very painful, but Reese is very open to talking about the disease, her treatments, and how she’s doing. We are open to any conversation she wants to have regarding her MS.”

Gary and Joli also have some advice for parents or other loved ones facing a similar situation:

“Don’t be overwhelmed by the diagnosis,” says Gary. “There is so much that can be done for patients with MS thanks to the great work done by the providers at the University of Colorado, MS Center and researchers.”

“Keep open lines of communication with your child,” said Joli. “They are most likely afraid for the future, concerned about how much this disease may affect their ability to participate in everyday activities and pursue goals related to a career, family, traveling the world, or becoming an artist.”

“And finally,” says Gary, “encourage your child to live as healthy of a lifestyle as possible. Exercise and nutrition, along with her DMT, have been key to Reese managing her disease.”

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