Community and peer support is important for our mental health
I believe it's important to address both the physical and mental aspects of FA
As part of the field work required for my master’s degree in social work, I worked with someone who had a traumatic brain injury, trying to help him move away from destructive behaviors. I always thought part of the problem was that he was in his late 30s and living in housing for people 65 and older. While it suited his physical needs as a person with a disability, he had no peers.
A couple of years later, some of my Friedreich’s ataxia (FA) friends and I visited a young woman with FA in her 20s who was living in a nursing home. Like the man I encountered during my field work, she was surrounded by elders. The facility took care of her physical needs, but I don’t think it met her emotional and social needs.
According to research from the University of Colorado School of Medicine, the mean age of people entering long-term care facilities is 84. Activities in the nursing home where the young woman we visited included arts and crafts, such as making butterflies out of clothespins. This might be a good activity for an adult with dementia, but not for the young woman we visited, who had a sharp mind.
A difficult transition
So, with these experiences in mind, I was eager to read a case study published by Psychiatrist.com of a 63-year-old man with FA (the same age as me) who was in a long-term care facility. It was a good read that focused on the need for interdisciplinary teams for FA patients. This means the medical team should consider both a patient’s mental and physical health. A big thanks to the authors for helping move this agenda forward.
The authors noted that the man had been living in regular housing and using a walker, and had recently transitioned to a wheelchair because of his progressive FA symptoms. He was struggling to get by in his apartment, which wasn’t wheelchair accessible. A hospitalization due to a bout of pneumonia convinced him that he needed comprehensive care in a setting that accommodated a wheelchair.
What the study didn’t discuss felt significant to me: Did he have a support network of friends and family? Did his care team explore other options before placing him in a nursing home? Was he receiving counseling to cope with the recent losses of walking and independent living? Does he have peers his age living in the home?
The authors described him as having a difficult transition to the nursing home. I think most 63-year-olds would find that transition hard. I know I would. Every bit of independence I lose because of FA is something I mourn.
Another study of nursing home residents under the age of 65 found that they suffer from many things, including social isolation and loss of identity.
The authors in the study of the man I mentioned above advocated for meeting both his mental and physical health needs. I wonder if an accessible apartment with personal care assistants might’ve been a better choice. I have no idea, because the article didn’t mention it.
While I’m curious about the well-being of this patient, I’m also grateful to be securely and safely in my own home. I have the good fortune of having friends and family members who support me here. I know others with FA don’t have the same resources I do, and I want you to know that I see you.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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