Crudele aims to bring MS out of the shadows
When Kathy Crudele of Cranston was diagnosed with multiple sclerosis (MS) in 2009, she thought that was the beginning of the end. But thanks to the physical therapists at RI Rehab and the support of the Rhode Island chapter of the National MS Society, Crudele is standing tall and working hard to raise awareness about this disease.
If you recently attended an event hosted by the MS Society, it was likely Crudele was there. Although she is unable to work because of her condition, she volunteers with the MS Society, helping with all fundraising events, including the annual Jet Pull, walk, bike race, and an upcoming craft fair.
She was also instrumental in helping RI Rehab become an MS Certified center.
“Having MS changes your life,” said Crudele.
According to the website for the Rhode Island MS Society, nearly 2,000 Rhode Islanders have MS.
Looking back, Crudele can see the signs that something was wrong. As far back as 30 years ago, when her oldest daughter was only a baby, Crudele remembers one incident where she was physically unable to get out of bed. She also remembers her legs hurting while touring colleges with her daughters.
“I would walk for five miles every day, rain, sleet, snow,” said Crudele.
Then she started to notice she was not able to walk as much, would be incredibly tired afterward or be out of breath when returning to her home off of Broad Street in Cranston after walking in Pawtuxet Village.
Crudele knew something was not right, but her doctors would always tell her it was arthritis, she needed to lose weight or she needed to go to the gym.
“Something’s wrong with that picture,” said Crudele.
As chance would have it, in early 2009, Crudele received a temporary job as a medical secretary in the neurology area of Memorial Hospital in Pawtucket. Being around the science and patients made Crudele do what she often does, research on the Internet. She said she believed she had MS, but it had never been discovered because she never had an MRI.
Finally, Crudele had her doctors perform one to try and figure out why she was extremely exhausted all of the time. In June 2009, she was officially diagnosed.
“I turned white,” said Crudele, explaining that even though she suspected that was the case, she was still surprised. “I said, ‘Not me. I took care of everyone. I did everything.’”
When she was diagnosed, she remembers seeing MS patients unable to move, confined to wheelchairs.
“I thought that would be my life. I thought ‘this is the end,’” said Crudele.
And her condition worsened quickly. Over the summer of 2009, Crudele’s legs swelled up due to fluid and she was already in need of a knee replacement due to arthritis.
“My legs felt like they were 100 pounds each,” she said.
By the time she started going to RI Rehab in early 2010, Crudele could not even walk from the car to the door of the facility. She had been to countless doctors for everything you could think of. “I didn’t know what was wrong; everything was wrong,” she said.
Following her initial diagnosis in June 2009, Crudele took the advice of her doctors, taking a laundry list of medications, including oxycontin and oxycodone. Crudele says she considered herself a prescribed junkie.
It was only after beginning to work with RI Rehab that she figured out all of those medications were only hurting her.
“It was the medication,” said Crudele. “I was overmedicated.”
RI Rehab changed that.
“I can attribute a lot of good therapy to RI Rehab,” said Crudele. “I can vouch for them.”
Crudele explained that one of the advantages of RI Rehab is that they have therapists to help with every area she needed, including legs, bladder and pelvis.
“When I started coming here, I didn’t have to go to all different doctors,” said Crudele, joking that she has worked with every employee in the facility.
Crudele started going to RI Rehab five days a week for physical therapy and to redistribute fluid in her. That eventually went to three days.
One month ago, Crudele officially graduated from her physical therapy program with RI Rehab. In just under four years, she went from not being able to walk and requiring a wheelchair to walking with a cane and even being able to drive her husband’s Toyota Tundra pickup truck.
“It takes a long time,” admits Crudele. “There are days I overdo it.”
Now that she has left the program, she must perform her exercises on her own, using a bike, elliptical and treadmill in her home or take water therapy at Health Tracks.
She also wraps her legs every night to compress the veins. The large amount of fluid in her legs back in 2009 left her with lymphedema, and the wraps help her legs feel better.
She has also stopped all medication except a daily injection designed to prevent more lesions on her brain from MS. She also has a medication to help with spasms if needed. An MRI completed three weeks ago showed no new lesions.
“If I don’t take [the injection] and I have a relapse, there’s no going back,” said Crudele. “I came so far; I don’t ever want to go back there.”
Crudele is also working with a nutritionist to get off of processed foods and tries to take part in more homeopathic treatments as opposed to prescription medication.
“It’s a lifelong process,” she said.
Now she aims to help others be open about their condition and support each other. Not only does she volunteer with the MS Society constantly, joking that she sneaks out to their office every chance she gets, she also speaks with people about RI Rehab, MS Society and other projects constantly.
“I came so far, it is selfish of me not to help other people,” she said.
She joined an MS support group that meets once a month; she attends meetings with her husband and they always take notice of how everyone else in the group is very young, most in their 20s.
“I look at them and wonder if I would have lived my life the same way if I had been diagnosed at their age,” said Crudele, who is 62. However, she adds that working as an advocate with so many young people makes her feel years younger.
When she was first diagnosed, Crudele remembers wanting to hide.
“I didn’t want to go anywhere. I didn’t want anyone to see me,” said Crudele.
She even admits that she continued to hide her condition from people, attributing the pain in her legs and her inability to walk to arthritis or her knee.
That changed at the 2012 Jet Pull. A TV reporter approached her (she was volunteering at the time; she cannot participate in the event), and asked if she had MS. Crudele decided it was time to “come out,” said yes and was interviewed on camera.
“I was just so tired of holding it in,” she said.
Looking for a way to help others and spread the word about RI Rehab, Crudele convinced Courtney Macksoud, her physical therapist, to become MS certified and make RI Rehab the first and only RI certified rehabilitation partner in MS care. Crudele said she knew that Macksoud had the right stuff to complete the training and make a difference.
“If they did what they did with me, what else can they do?” said Crudele.
“She was a little discouraged with the services and practices in the area,” said Macksoud about Crudele’s suggestion to get RI Rehab certified. “She was very supportive, a great marketer and a great advertiser.”
Macksoud explained that she went through an exam from the Consortium of Multiple Sclerosis Centers to become a Multiple Sclerosis Certified Specialist. To be a candidate for that certification, one must have at least one year of experience in MS care and have spent 20 percent of professional time with MS patients. As a candidate, Macksoud took an exam covering the fundamentals of MS, multidisciplinary MS care and patient empowerment to earn her individual certification.
Although Macksoud is the only RI Rehab employee to receive this form of individual specialization, 21 staff members, including physical therapists, occupational therapists and physical therapy assistants, went through specialized training so RI Rehab could become a certified Partner in MS Care through the MS Society. Macksoud explained that all seven RI Rehab locations in the state have that certification; the next closest center certified through the MS Society is in Long Island, N.Y.
“It’s nice for us. It’s an expansion for the services we provide,” said Macksoud, who works out of RI Rehab’s Cranston location. She added that having seven locations with this certification helps to fill a gap in the area. “It’s rewarding.”
Crudele remembers needing to go to Boston for this kind of treatment from specialists in MS.
“That occupies a lot of time. It’s exhausting [for an MS patient],” she said. “It makes it easier.”
Crudele also said having a facility be MS-certified will help give area doctors a place to refer their patients. She pointed out that when she was diagnosed, her doctors did not recommend her anywhere, but she wanted to go to a place where they knew how to treat MS. Now doctors will be able to introduce patients to RI Rehab, who can introduce patients to the support system in the MS Society.
“Years ago, they would tell you if you had MS, sit and minimize activity,” said Crudele. “But that is the opposite.”
Crudele says her biggest supporters are her husband Ron and her daughters, Lindsey and Bethany.
“They were always there for my support,” said Crudele. She adds that her daughters are also making sure to take care of their own health. Doctors tell her that MS is not hereditary, but they are being cautious.