Embracing The Journey

Navigating a Spinal Muscular Atrophy DiagnosisThe following is a guest blog written by Taylor Danielson, a member of the SMA community from British Columbia, Canada.

Reflecting on my own journey with Spinal Muscular Atrophy (SMA) and being part of the broader community, it's evident that we've come a long way, living through the evolution of SMA management and witnessing first-hand the tremendous strides that have been made. Although living with SMA involves facing the reality of losing motor functions, it's the broader picture that offers a sense of hope and resilience. 

The past several decades have seen tremendous progress in the SMA community, from the development of new treatments to an array of resources and tools that significantly aid in navigating life with the condition. The resources, community networks, and tools available today were once unimaginable, and now these resources are not just about managing the condition; they're about enhancing our quality of life.

We’ve come so far as a community since my diagnosis in 1996. We now have incredible patient groups like Cure SMA Canada, since 2000 or Muscular Dystrophy Canada, established in the 50’s who, are cornerstones in the lives of Canadians and their families living with SMA.

Living with SMA means leaning on the community and utilizing available resources, which are fundamental to achieving your goals and living a life with the quality you deserve. Even better, the tools, resources, and community support available to the SMA and neuromuscular disease community at large grow year-over-year.

It’s important for both newly diagnosed individuals and families, as well as those who have lived with the condition for many years, to understand not only which supports are available to them, but also how and when to utilize them. I have greatly benefited from the resources I'm sharing with you here, which I find personally helpful. 

My journey through the full spectrum of SMA has uniquely positioned me to understand these challenges and the resources needed to help support me along my journey. I've experienced the ability to walk during my early elementary school days, and now, as my 30th birthday approaches, I am confronting the loss of functional use of my hands. This progression has been challenging, but it's also highlighted the incredible support systems available. These systems have been a lifeline, enabling me to live my best life even as my needs evolve. Their role in my journey is a testament to the strength and resilience that can be found in adversity, and I hope they can offer the same support and empowerment to others living with this condition.

The following resources are valuable whether you’re a caregiver, newly diagnosed, or looking to support a family member or friend with SMA.

General Resources

In the world of SMA management, there's more to explore beyond medical advancements. A wide range of resources are available to assist individuals and families living with SMA. These include practical tools for daily living, support for caregivers, recreational activities tailored for accessibility, and educational resources. They are designed to make day-to-day life more manageable and enriching for those with SMA. From finding the right daycare and accessing specialized equipment to seeking financial aid and exploring employment options, this information is crucial in helping individuals with SMA navigate their condition and lead more independent lives. For detailed information on these resources, see the SMA My Way Resource Guide.

Service Dogs

Service Dogs (i.e. assistance dogs or mobility dogs) can help with a myriad of everyday tasks, such as picking up objects, opening and closing doors, and helping you to reposition your body to achieve more comfort. They assist with physical tasks and support mental health through actions like grounding techniques and pressure therapy, as well as providing general companionship and peace of mind. The relationship between yourself and a service dog is truly unique to each individual and can last between 10 to 12 years, depending on a variety of factors. Several different organizations exist across Canada, the United States, and worldwide that train service dogs as well as their handlers (i.e., owner, you!). For a more comprehensive understanding of service dogs, refer to the SMA My Way Resource Guide on Service Dogs.

Multidisciplinary Care

Multidisciplinary care simply means that there are many different types of medical professionals who can help you support and manage SMA. As SMA is a neuromuscular disorder, we all have our neurologists, but what about a dietitian, respiratory therapist, or general physician? Each of these specialized areas of healthcare and medicine, among over a dozen others, is important for managing the all-encompassing and complex condition of SMA. A multidisciplinary team of healthcare professionals is necessary for managing all aspects of your condition and getting a complete picture of your journey with SMA and how best to manage it. You can find more in the SMA My Way Multidisciplinary Team Guide.

Assistive Technology

I think it would take all of 10 minutes of discussion with me for even the most unobservant individual to pick up on the fact that I have heavily leaned on assistive technology (AT) as my “resource of choice” for managing my SMA. Technology is advancing at a breakneck pace, with AT following closely behind. Our power chairs get more advanced every year, with new features like motorized sit-to-stand, which not only afford us the ability to have a conversation eye-to-eye with non-disabled individuals but also give us a way to give our legs a much-needed stretch. Perhaps even more important than the features our power chairs have is giving us new ways to interact with and operate them. These amazing advancements in power wheelchairs are wonderful for restoring independence through mobility. For a more in-depth look at assistive technology, see the Interactive Guide for SMA Assistive Technology.

The patient groups I mentioned earlier in this article are ready to support you on your journey and connect you with others. If you’re looking for more connections and authentic stories from people living with SMA, I invite you to check out SMA My Way. This is a place where the community discusses topics like relationships, careers, and advocacy. If you want to join the conversations, you can also find SMA My Way on Instagram and Facebook.

Looking ahead, there's a sense of optimism and hope in the space of SMA. The ongoing advancements in treatment and support systems paint a hopeful future for people and families dealing with SMA. Our journey is far from over, but the path is illuminated with the progress we've made and the possibilities that lie ahead. It's this progress that fuels our hope and propels us forward, united as one community.

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