For nearly 10 years, Glenda Skene couldn't make sense of her balance issues, occasional falls and the feeling that her legs couldn't move as fast as usual.
"I wasn't sure if anything was really wrong," says Glenda. "I would think maybe my knee locked up or I fell because of an uneven sidewalk or a hole in the sand."
Glenda and her husband, Ross, recount the decade of frustration until they finally got an answer. On June 4, 2013, she was diagnosed with
primary-progressive multiple sclerosis (MS) at the age of 59.
By this point, Glenda's balance was off most days, making it hard to retain her independence and to participate in day-to-day household chores.
"There's nothing I can do to help her symptoms," says Ross, who shares tai chi and other wellness disciplines with people and hoped it would help with Glenda's balance, but it didn't.
"That's very frustrating."
Soon after her formal diagnosis, Glenda's neurologist referred her to
Toronto Rehab's Outpatient Multiple Sclerosis Rehabilitation Program located at the
Rumsey Centre. As part of the specialized program, Glenda was assessed and cared for by an interprofessional team including a physiatrist, social worker, physiotherapist and occupational therapist.
Glenda and Ross spoke to UHN News as part of Multiple Sclerosis Awareness Month in May.
When she arrived to Rumsey Centre, she primarily used Ross' arm for balance and if she was on her own, she'd use a cane.
Glenda's physiotherapist, Sabine Koszegi, recalls that during her assessment, "it became evident that Glenda experienced significant fatigue, was at high risk for falling due to her balance impairment and weakness, and that she spent most of her time walking holding onto Ross.
"Ross would worry about her any time she was on her own and didn't have him to hold onto. Both Glenda and Ross expressed that they wanted Glenda to be more independent."
Sabine introduced the idea of using a walker. After multiple discussions about the benefits of a walker, Glenda agreed to give it a try. They tested four or five different walkers before they found the right one.
Glenda said it felt like a defeat for her, but after accepting the idea it has since given her some independence.
"Admitting to yourself that you really have this problem is hard and takes time," says Glenda.
Glenda also experienced pain in different parts of her body, but primarily in her rotator cuff. Glenda's neuropsychiatrist, Dr. Tania Bruno, MS Service Clinical Lead, Toronto Rehab, helped address this pain, which allowed Glenda more physical function.
"My focus is on ensuring people living with MS can reach their maximum potential by optimizing the patient's symptom management and functional independence," says Dr. Bruno. "I am often charged with focusing on pain, energy, mood, bladder and bowel functions, spasticity, and other key areas that impact a person's daily life."
Glenda told the team she was feeling more and more limitations to her independence at home. Her occupational therapist, Stacey Marshall, helped problem solve some barriers by advising on specific modifications to their apartment and helped source necessary materials. For example, she recommended a raised toilet seat, bathroom bars and a reacher for Glenda to use to grasp items high and low in the home.
"One of the aspects that I enjoyed about Glenda's case was that her daily living goals included having her return to her art, though she was having some issues holding onto various tools," says Stacey. "I was able to find a gel wrap that could be used to create a custom secure grip on paint brushes and sculpture tools to allow her to reengage in her art."
"We would have been lost without coming here." Ross says of the Rumsey Centre.
The team also addressed Glenda's feelings around her MS diagnosis by providing cognitive behaviour therapy (CBT).
"You deny having MS at first," says Glenda. "This is a complete turnaround from how you lived before. You have to accept what you can no longer do. And, that can be hard."
Brigitt Degeus, social worker with the MS Program, provided Glenda with CBT. It was effective because it helped her understand the challenges she faced differently and how her thoughts were impacting her emotions and behaviours. For instance, how she thought negatively about walkers.
"For most patients with MS we see at Rumsey, there is a challenge to accept the possible implications of MS, an overall feeling of loss, internalized anger, anxiety and depression," says Brigitt. "It's a mind trap – people often focus on how they are unable to do tasks that they did with ease prior to MS.
"Some aspects of CBT are to shift negative thinking and to develop alternative balanced thoughts to help individuals move forward."
Brigitt recalls that, "Glenda would practice skills discussed in their sessions and report back that they worked. She became aware of her thoughts, which for example was 'I'm going to be tired even before I get where I'm going.'
"I coached her to see her walking from a different perspective. Glenda is a perfectionist so her thinking was if I can't do it this way, I'm not going to do it at all. She learned how to do something differently. For example, she incorporated rests in her walking."
Glenda wrapped up her one-on-one sessions with each care team member and enrolled in Toronto Rehab's Living Well with MS group, followed by the Keeping Fit with MS group. She continues to see Dr. Bruno for semi-annual appointment at Rumsey Centre.
Glenda is still getting around the house and her neighbourhood by walker and looks forward to spending time at the lake with friends this summer.
"The Rumsey staff teach you how to accept disease, handle the symptoms and they make you more comfortable with the day-to-day," says Glenda. "It's a wonderful place."
