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I am an undergraduate student studying Medical Sciences at the University of Western Ontario. This summer, I was given the opportunity to perform clinical research on familial ALS at the Sunnybrook Health Science Center’s ALS Clinic. This experience has shown me that even in the face of its debilitating nature, medical professionals, caregivers and patients alike continue to avidly search for a cure. With no effective treatment available, other services are provided to patients in the hopes of improving their quality of life and independence. For a disease as dreadful and inexplicable as ALS, care in the form of social support and comfort optimization is especially valuable.
I recently had the privilege to accompany the clinic coordinator, Myrna Moore, on a home visit. A peek into how people cope with their situation at home from day-to-day sheds light on a type of life that is difficult to imagine during a patient’s visit to the clinic. Beyond that, what truly breaks through from behind the damaged nerves and sometimes broken spirits is the real person inside.
It was through this visit that I learned about a lovely 59-year-old female who was diagnosed with ALS three years ago. Having suffered from a duodenal ulcer at age 21 and having been previously diagnosed with cervical cancer in her late 30s, she seemed preoccupied by her apparent “stream of bad luck”. What she described as a slight weakness in her left foot in September 2003 after having trouble completing the Terry Fox Run has now taken the form of significant weakness and near absence of mobility in her lower limbs.
In addition to her frustration with the irreversibility and progression of her disease, there are other obstacles with which she must cope. Her beautiful home is in need of many renovations that will be both cumbersome and costly. A number of steps and ledges at entrances into the home and its bathrooms will need to be remodeled to be more wheelchair-friendly. Moreover, her well-appointed home may ultimately face the addition of a customized stair glide and a main-floor bathroom with a roll-in shower, two costly endeavors for the patient and her husband to manage.
What appears to combat the frustration and helplessness she feels is a passionate determination to live. Dissatisfied with the one agent currently approved for treatment, the patient has pursued a variety of expensive alternative therapies and drug trials. Her initiative and persistence are coupled with what may be the best medicine currently available for ALS: a strong support network. As her husband’s career requires him to be away from home frequently, she is lucky to have many friends in her neighborhood who are happy to check up on her and to lend a helping hand whenever needed.
Myrna’s home visit provided the patient with further information regarding social and medical resources, including hospice, CCAC and ALS Society contacts and support networks. By discussing her situation in length, she shared with us the state of her disease, her current lifestyle and her outlook on her future. Unlike many others, she is fortunate to have strong social support and the courageous spirit of a fighter. It appears that her “stream of bad luck” is countered by one powerful source: hope.