I recently read an article in the Virginia Journal of Education that made me think about my feelings toward my mobility aids. The author, Kelly Hickok, is a wheelchair user, and she described how mobility aids give her a sense of freedom. She wrote, “We don’t view our wheelchairs or other mobility aids as ‘confining.’ Such assistance, in fact, is quite liberating because it gives us greater independence.”
I have Charcot-Marie-Tooth type 1A and wear ankle-foot orthoses (AFOs) to help with drop foot, ankle instability, and balance. I have a love-hate relationship with my AFOs. They help to improve my walking and allow me to accomplish more than I could without them. However, I still have issues with their appearance and how other people view them. I am working on my awkwardness about wearing them and have become more comfortable with wearing clothing that exposes my AFOs.
I often use a cane when walking long distances and on uneven ground, and to help with my balance. I’ve become more comfortable using my cane in public places where I expect to see people I know. However, I still feel a little embarrassed that I need to use it.
It makes it easier for me to walk and keep up when I’m out with a group and reduces my fatigue levels after a day out. So, why do I feel self-conscious about my cane? I am not sure. Do my mobility aids allow me to participate in more activities? The answer is yes, the aids allow me to get out and about more often.
Research has found that elderly patients with reduced mobility have poorer health-related quality of life. On the other hand, studies suggest that increased social interaction  improved quality of life scores. That makes sense to me; if you can get out and about, you tend to feel more positive. If I am having a stressful day, going out to be among people helps to lift my mood. It seems that both social interaction and mobility can have a beneficial impact on mental health.
I can understand why people believe that their mobility aids give them more freedom. The aids allow them to go places and do things they couldn’t do otherwise. My AFOs and cane enable me to engage in more activities than I could before I had them.
Do I need to love my aids to see the benefits? No, but I should accept them for the advantages they give me. Perhaps I need to recognize that by using them, I am improving my quality of life. One day, I hope to be able to say without hesitation that my mobility aids are “liberating.” Meanwhile, I am working hard to overcome my hang-ups about living with a disability.
|Jill Price is a fourth grade teacher and a mom to a teenage son. She was diagnosed with CMT 1a at the age of 2. Jill loves to travel and enjoys spending time with her family and friends.|
Source Charcot-Marie-Tooth News
- Mobility predicts change in older adults’ health-related quality of life: evidence from a Vancouver falls prevention prospective cohort study, Davis JC, Bryan S, Best JR, Li LC, Hsu CL, Gomez C, Vertes KA, Liu-Ambrose T. Health Qual Life Outcomes. 2015 Jul 15;13:101. doi: 10.1186/s12955-015-0299-0. Full text
- Role of social interaction on quality of life, Debalina Datta, Pratyay Pratim Datta, Kunal Kanti Majumdar. Natl J Med Res. 2015; 5(4): 290-292. PDF
|Charcot-Marie-Tooth 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 other 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 Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.|
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