Ten years ago Margo retired up near Georgian Bay with her partner, Per. They moved there mainly because of their love for sailing. Eventually, though, their sailboat proved too much work and they now have a powerboat. Getting out on the water is very important to them and they go out as often as they can.
Margo enjoys working at her stained-glass business, and also volunteers a couple of times a week with her golden retriever, Miranda, in a pet therapy program. Together they visit patients in nursing homes, hospitals and long-term care facilities.
Considering how active she was it became something of a shock to Margo when in March of 2015 she found herself bedridden. Unable to move her legs, she needed a lot of help with bathing and dressing — it had become difficult just to hold a spoon. Her independence was completely compromised.
Margo told me that it started around January of this year. She noticed that it was becoming increasingly difficult to climb stairs. She was not able to bear weight on her right leg. When she tried, she experienced pain. Over time, that pain became more intense and progressive, something she felt all over her body. She realized that if this continued she wouldn’t be able to live her life as she had been used to doing. She might also have to abandon a planned vacation.
She made an appointment with her family doctor, who prescribed prednisone and referred her to a rheumatologist. After taking the prednisone, Margo felt much better — good enough to go on her vacation.
In early March, though, after returning from her trip, Margo began to experience a shortness of breath. After a CT scan and chest x-rays, she was diagnosed with a pulmonary embolism, and put on oxygen and blood thinners.
When Margo saw the rheumatologist, he referred her to a neurologist in Barrie. During this time, her prescription for prednisone ran out. Without it, she became weaker and weaker, and gradually became bedridden.
On May 11, she went to see the neurologist. “I was determined to make that appointment,” said Margo. “It took three people to carry me out to the car,” she continued, “but we rented a wheelchair so Per and a neighbour could help me when we got to the doctor’s office.”
“The neurologist,” said Margo, “knew exactly what I had.” She was diagnosed with polymyositis, an uncommon inflammatory disease that causes muscle weakness and affects both sides of the body. The disease makes it difficult to climb stairs, rise from a seated position, lift objects or reach overhead. “The neurologist gave me some options. We decided to go to St. Michael’s Hospital (SMH),” said Margo, “and we immediately left for Toronto.”
When Margo arrived at SMH, the health care team did a thorough and complete work up. They confirmed that she had polymyositis, and after another CT scan and chest X-ray, as well as a lung biopsy, she was additionally diagnosed with lung cancer. In June, Margo had a lobectomy (partial removal of a lung). After her operation she required rehabilitation and radiation treatment.
Margo was admitted to the Complex Continuing Care (CCC) unit at The Salvation Army Toronto Grace Health Centre (TGHC) in July 2015. On a daily basis, Monday to Friday, for the next six weeks, Margo went to Princess Margaret Hospital for her radiation treatments. She also began her rehabilitation at TGHC, working with Josh, her occupational therapist (OT), and Sarah, her physiotherapist (PT).
Most of Margo’s muscular and strength problems are due to the polymyositis. This disease, Sarah tells me, affects the patient’s trunk, making everything from the shoulders to the hips really weak — essentially the core becomes very weak. Fortunately, polymyositis, I’m told by Sarah, responds well to exercise.
At the very beginning, Margo required help dressing and walking, and because her hips were weak she had a hard time standing up from low surfaces. Josh worked with her, assisting her so that she could rise from progressively lower and lower surfaces. This helped strengthen Margo’s hips.
At the same time as Josh was working with Margo, Sarah began working with her on bed exercises. She gave her a leg lifter, which quickly helped Margo regain some of her independence, assisting her in getting out of bed.
In the beginning, Margo needed a lot of endurance training. At the start of her therapy, Margo, moving with a two-wheeled walker, could only travel about ten metres at a time. Eventually, though, she was able to progress to a rollator walker (four wheels and a seat).
In the first two weeks, Sarah told me, Margo did very well. Sarah and the interprofessional health care team saw Margo’s potential for more rehabilitation, and she was moved from CCC to the TGHC’s Post Acute Care Rehabilitation (PACR) program. In order to accommodate Margo’s radiation schedule, Sarah rearranged her schedule to work with her early in the morning, before she left for her appointment.
Margo’s rehabilitation has progressed very well; she now is able to walk with a cane and climb a whole flight of stairs. Sarah continues to work with her on outdoor walking. This challenges Margo’s balance, strength and endurance.
Margo tells me she loves the PACR program. She is thankful that the TGHC admitted her and was able to provide a rehabilitation schedule that supported her radiation treatment. “The nurses are fabulous, as is the whole interprofessional health care team,” says Margo. “Sarah is marvellous and so dedicated. She helped me a lot in regaining my independence.”
Of course Margo misses Miranda and looks forward to returning home. For now, Per has been travelling down every Saturday from Georgian Bay to visit. Margo tells me they often go out to Swiss Chalet. Laughing, she says, “Per has offered to take me to other places, but I can’t get enough of Swiss Chalet. It’s the most ridiculous thing.”
Margo wants me to know she has the best room in the hospital. I quickly realize she is talking about her roommates when she calls it the “happy room.”
“I think even the nurses like to come to our room. We laugh and joke, and support each other,” says Margo. “They’re wonderful gals — generally we’re a pretty happy group. We often have pizza parties,” says Margo, “we just don’t tell the kitchen.”
Margo is now waiting for an appointment with the oncologist to determine if she needs chemotherapy before she is discharged.
I wish her well and told her I would drop by for one of their pizza parties.
By Gerry Condotta