When I first met Michael he give me a nice wide and warm smile, but I noticed that he was having difficulty attempting to rise from his bed. He extended his hand and our moment of greeting became slightly awkward. Michael has Multiple Sclerosis (MS); he is legally blind and his spasticity issues make it hard for him to control his movements. Encouraged by his determination, I reached out to him and gripped his hand. I held on for a moment and acknowledged his attempt.
MS is an unpredictable and disabling disease in which the immune system attacks the protective sheath (myelin) that covers the nerves. As a result, the usual flow of nerve impulses along nerve fibres (axons) is interrupted or distorted. The damage to the myelin disrupts communication between the brain and the rest of the body. A wide variety of MS symptoms may occur, depending upon what part or parts of the central nervous system are affected.
Michael is now a patient at The Salvation Army Toronto Grace Health Centre (TGHC). He is thirty-nine years old and was diagnosed with MS when he was nineteen. His MS progressed continuously, resulting in his becoming significantly disabled. He is dependent on his mother, Joanne, who has become his primary caregiver.
A few years ago, Edward, his father, passed away from a heart attack. Up until Edward’s passing, Joanne shared caregiver duties with her husband. Joanne recalls that Edward did the cleaning, grocery shopping, and attended to Michael until she arrived home from work. “He was a wonderful husband and father,” says Joanne. “We both tried to do everything we could to help Michael, and I continue to do so.”
Several medical procedures have been done to help mitigate Michael’s MS symptoms. He has had deep brain stimulation — a procedure done for Parkinson patients to block the impulses that cause tremors. He has also travelled to the United States for Dr. Zamboni’s liberation treatment. This procedure, which is not approved by Health Canada, involves the stenting of certain veins that compromise the blood flow draining the central nervous system (the brain and spinal cord). Dr. Zamboni believes this is what contributes to the symptoms of MS. Joanne says that Michael showed some progress for the first two to three weeks after the procedure, but then he returned to previous state.
Joanne admits that even after he underwent these procedures Michael grew progressively weaker. She was able for a time to help Michael transfer from his bed to his wheelchair, but it became increasingly difficult for her. In one instance, Michael fell, and she needed to call 911 to help get him back into bed.
Michael’s continuing muscle weakness has caused other problems, too. On one occasion, he was unable to properly void his bladder and developed an infection. He was admitted to St. Michael’s Hospital (SMH) because the infection had reached his kidneys and into his blood stream. He developed a high fever and was then put into the isolation unit for two weeks. Before he was discharged the health care team at SMH determined that he had become too weak to return home to be cared for by Joanne. He was going to need rehabilitation to help him regain his strength. As a result Michael was admitted to the TGHC on November 3, 2014.
When I sat down to talk about Michael with Joanne, she was already prepared, with a written letter expressing Michael’s gratitude regarding the excellent care provided by the nurses and the interprofessional health team at TGHC. She began to read the letter and then stopped “I’d like to tell you,” she said, “that the health care team at SMH called it a miracle that we were quickly able to get a bed here at the TGHC.”
Joanne believes Michael is getting excellent care and is very impressed with the efficiency of the nurses and the interprofessional health team. “I’ve had problems in the past getting Michael fitted for a proper wheelchair,” Joanne said. “Suddenly, though, I’m here at the Grace and there isn’t a problem or a fuss. We have a chair that fits him and fits him well.”
Michelle, Michael’s occupational therapist (OT), was quick in determining the right wheelchair for Michael. Since he is unable to shift his weight because of his MS, she gave him a new wheelchair, one that enables him to tilt back. This allows him to remain in it for longer periods of time because it relieves the pressure on his bottom and back. Michelle has helped Michael improve his bed mobility, where he is now able to roll to one side. This helps his caregivers assist Michael with activities of daily living (ADL) like washing and dressing.
Michelle also works with Michael on his upper extremities. He works with free weights and wrist weights so he can maintain his strength and aid the staff when he transfers from his bed to the mechanical lift.
Being legally blind, Michael was unable to access his bed controls. Because he was unable to see them, Michelle fastened beads to the control buttons so that he could feel them. Michelle also attempted to increase the range of Michael’s ADL to include the use of feeding utensils; however, because of his tremor he found it hard to target his mouth and Joanne continues to feed him.
Barbara, Michael’s physiotherapist (PT), is working with him on strengthening his lower and upper extremities. Michael is also working really hard on his core postural muscles and his control to help him with his balance. He does bed exercises to maintain a range of motion and functional mobility; as a result, he is now able to roll to one side and push himself so he can get his legs to the edge of the bed. He works on an exercise bike to improve his mobility and to strengthen upper and lower extremities. He also utilizes a standing table, a mechanical apparatus that assists him with postural and trunk control. For safety he must continue to use a mechanical lift to transfer from his bed to his wheelchair. Whatever strength he has, whatever range of motion he has, Barbara and Michelle are working to try and improve, or at least maintain, a satisfactory level. Although Michael is stronger than when he arrived at TGHC, the staff agree that he needs further improvement if he’s to return home.
When I asked Joanne if Michael would be returning home, she answered by telling me this is the question that has been constantly tugging at her heart. “Michael has asked me,” she said, “Mom, don’t you want me home anymore?” She tells Michael, “It’s not that I don’t want you to come home, but I’m getting older and I really don’t know when the Lord will have me?”
Joanne is not only concerned that she is getting older and that it will be harder to manage Michael, but she worries, too, that in the future she may need medical attention. A year ago, she was hospitalized because of her lungs; as a result, she may require surgery. “This is a very hard decision for me to make,” she confesses: My immediate family, who has given me such wonderful support and are all close to Michael, have asked me if I’m going to bring him home. My daughter’s concern is similar to mine, and she has asked me what will happen to Michael when I’m gone. I want them to understand that if Michael needs to be in a long-term care facility, the decision will be because I’m thinking of my health and what is best for Michael.
Joanne also recognizes that the environment at the TGHC is good for her son: Michael is responding well to the program; he’s more social when he’s here working with his PT and OT, and he interacts well with the nurses. Every morning at 10:00 a.m. he starts his day, working hard to improve and maintain his strength. In recreational therapy he is learning to bake, and they teach him things like measuring the ingredients. When he plays bingo, he will call out the numbers — these are all things that help him think and make him part of a community.
We’re very devoted to our faith, and Spiritual Care Services at the TGHC are excellent. This is very important for me and for Michael, who has been to Sunday School since he was a little boy.
Joanne understands very well the benefits of a rehabilitation environment like that offered by the TGHC, but that hasn’t made her decision any easier. “Would I like my son home with me?” she asks, and then answers, “Of course, he’s my son, and he wants to come home, but Michael needs to get stronger.”
For now, Joanne feels at peace, knowing that at night when she goes home Michael is well cared for by a dedicated and hard-working team at the TGHC.
By Gerry Condotta