Amyotrophic lateral sclerosis (ALS) is often referred to as "Lou Gehrig's Disease," and it is a progressive neurodegenerative disease that affects the nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. This disorder is characterized by rapidly progressing weakness, muscle atrophy and fasciculations (twitches), muscle spasticity, difficulty speaking (dysarthria), difficulty swallowing (dysphagia) and a decline in breathing ability.
While in my second year of OT school I was in the process of learning about neurological disorders when I was shocked to hear a friend of my family was exhibiting some of the early symptoms of ALS. She was only 49 years old when friends and family started noticing how often she dropped things, tripped over carpets and entryways and often sounded like she was drunk. After driving 5 1/2 hours to the closest city, Edmonton (as in Alberta, Canada) and undergoing a few days of tests she received a definite diagnosis of ALS. A hard-working foster mother her whole working life, her and her husband were still raising two children and her ability to continue this hung in the balance. Fortunately her husband and some friends of the family were able to help with caring for the children but even at the end of her life she hadn't given up on them; she wasn't afraid to scold her children using her augmented alternative communication (AAC) device and some fierce facial expressions. I wasn't able to be a part of the Occupational Therapy she received after her diagnosis but I imagine her team focused on maximizing her speech, her safety in her mobility with equipment in the bathroom and shower and tried to optimize her ability to complete basic ADL as independently as possible.
It wasn't until a few years later that I encountered ALS as a practicing OT. I was working in a skilled nursing facility when I met a couple who had come in with separate but similar conditions (she had fallen and sustained a pelvic fracture, he was having falls as a result of a new diagnosis of ALS). They ended up moving into the long-term wing of the SNF to save money and to be together as much as possible. During his course of therapy I modified resting hand splints to prevent contractures from developing, the speech language pathologist (SLP) worked on an alphabet board and later a symbol board so he could communicate with staff and family and PT fit him for the right pair of ankle foot orthotics to prevent falls and Unna boots to prevent skin ulcers and pressure sores. We collaborated with the nurses and family members to help him maintain his quality of life but even after a feeding tube was placed he was still gone by the end of the year. And I have to admit that it was a relief when he passed on; he choked and coughed so often and so hard anyone could see it was a miserable way to live. But I will always be thankful that it was from him that I learned first hand how captivating and informative the human eyes can be; he had a hard time using his communication devices as his physical abilities deteriorated but he could still say a lot with his eyes if you took the time to see.
A few years later I saw my 2nd ALS patient. Now working in Home Health, I met the patient and her husband in their cosily decorated living room. Just weeks ago my patient had been diagnosed with ALS and her speech and swallowing abilities were already deteriorating. Fortunately she could still walk and transfer without any device or help and she held onto this ability for most of the time I worked with her. Having been diagnosed with early-onset dementia, she wasn't able to communicate with our team what her end of life wishes were. It fell to her husband to share with our team that their religious beliefs prevented them from using life prolonging medical procedures. That didn't make it any easier when I was visiting with the patient and her 20 year old daughter (the caregiver for the day) when she asked me what other patients do when they can't swallow. I described that a feeding tube is usually surgically placed and the patient receives their nutrition through a type of pump machine. She enthusiastically said "Well, that's what we'll do then!" and that's when I had to gently tell her that her parents had decided to let the disease run its course.
During my initial follow up visit I brought out a theraband, theraputty and instructed my patient's husband how the patient could use these tools to maintain her muscle strength but that once the neurons died there wasn't much we could do to bring those muscles back. I also brought out a raised toilet seat, and instructed her husband how their step-in shower with glass doors could be modified once she was no longer safe and independent with her mobility. I got to know her family quite well and during our sessions tried to teach her husband how to stretch out her left shoulder (previously injured by a damaged rotator cuff) so she could get dressed without pain. Her husband admitted that he never did the stretches on his own but was very appreciative of this work and often told me how much the patient enjoyed my visits. I believed him, even though while I was there after about 20 minutes she would always get up and leave the room to watch TV shows on her iPad. As I read note after note in the chart marveling at how many times my patient's husband had had to call the Emergency line for help because my patient just couldn't stop coughing I knew my treatment was coming to an end. And so, after only three months my patient was transferred from Home Health and Palliative Care Nursing (which helps people adjust to their new diagnosis) to Hospice (the patient has a prognosis of 6 months or less to live).
I don't know if my Home Health patient is still alive or if ALS has claimed her life but I am so thankful I was able to provide some support and comfort during such a challenging time in their lives. I don't usually forget my patients as a rule, but I know my ALS patients will continue to stay with me and that I continue to learn, usually with the patient and their family members, about how to best treat this destructive and complicated disorder.
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