Maintaining muscle strength is critical when living with spinal muscular dystrophy (SMA). In order to prevent the muscles, tendons, and ligaments from weakening to the point of no return, professional and routine therapy is essential. 

Currently, I’m struggling to receive the required physical and occupational therapy I need to stay limber. Unfortunately, adults with SMA aren’t provided the same amount and quality of therapy compared to what was offered in childhood. As a child, I received physical, and occupational therapy 3 days a week. The sessions were an hour at a time with trained therapists.

It’s difficult for me to comprehend why this would change, especially during adulthood. As we age, it’s only natural that our bodies become stiffer and not as easy to manipulate. The average person walks every day maintaining their flexibility. However, those of us who are compromised physically, lack the ability to maintain a walking routine each day. 

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Meanwhile, being informed that my therapy was being dramatically cut, shocked me. Where is the justification? In my specific situation, in-home therapy is most suitable. The provision is offered, but only twice a week for 30 minutes, and only 8 weeks at a time. After the 8 weeks are fulfilled, you’re expected to appeal for another 8 weeks, which can take months for approval. Having a gap of time without therapy can easily allow the body to atrophy, and retract everything we worked so hard to achieve.  

The expected responsibility rolls over to my family and personal care assistants (PCAs) to continue the therapy. And, although they do their best to help maintain what I achieved, professional skill is lacking. In which case, this leaves me subject to injury and other compromising issues. 

Individuals with SMA have delicate bodies. Our muscles and ligaments can sprain or be injured very easily. Nevertheless, that’s why I stress the importance of having an educated, professional therapist work with me. It will prevent anxiety and uneasy situations for both me and those providing care. 

Physical and occupational therapists have many years of training and schooling. They understand the way the human anatomy functions and operates. They’re skilled at knowing how to manipulate the muscles without causing impairment, or pain. I’ve been injured on several occasions, which could have been easily avoided if I didn’t have to rely on, or expect my PCAs to perform the same expertise therapists obtain. Not only does this make my caregivers feel hesitant to stretch my body in a foreign way that’s not familiar to them, but they fear liability, too. If I’m sensing my PCA is feeling uncomfortable to perform a task, I’m going to feel just as uncomfortable. PT and OT therapy is nowhere in their job title, therefore, they shouldn’t be held responsible to assist with it regularly. 

The only other option is to receive therapy through outpatient care. And although this may sound plausible, it’s not as feasible for someone living with a disability. I do, however, try to take advantage of it when I get the opportunity. But, living in a cold climate as I do, makes it challenging to get out in winter and it also leaves me vulnerable to sickness during cold and flu season (along with Covid). 

Transportation isn’t always easily accessible as well, which can make regular appointments difficult to sustain. 

To many, this may sound like a list of excuses. I can understand that when viewing the situation from a surface level. However, these are legitimate reasonings, that require a deeper evaluation. I emphasize in a few of my other articles the fact that not everyone with SMA, or any other rare disease, requires identical solutions. We all have unique, and specific needs that if left ignored, will leave us surviving rather than thriving.