If you have multiple sclerosis (MS) and have recently begun using a wheelchair or anticipate needing one regularly, you might be concerned about how it will impact your life. The reality, however, is that a wheelchair often grants more independence rather than less, as Dave Bexfield, founder of the nonprofit ActiveMSers.com, explains after his own diagnosis in 2006 and subsequent need for a wheelchair in 2009.
This transition, while significant, does not have to mean a reduction in activity or life experiences. Viewing the wheelchair as a tool for maintaining mobility—a key to unlocking continued engagement with the world—is crucial for a positive adjustment. It is a means to preserve energy, manage symptoms like fatigue and weakness, and actively participate in life, rather than a sign of giving up.
Selecting the Right Wheelchair for Your Body and Lifestyle
The first step toward sustained activity is choosing a wheelchair that is the right fit for you. This does not necessarily mean buying the most expensive model, but rather one that is tailored to your specific needs. An ideal wheelchair should fit your body correctly, be lightweight enough for you or a loved one to lift and transport easily, and be comfortable for long periods of sitting.
Consulting a seating clinic or a specialized wheelchair vendor is highly recommended to ensure an optimal match. Once you have the right model, personalizing it with decorations or practical additions like a cup holder can make it feel uniquely yours. Also, consider practical modifications for different climates or activities, ensuring the chair adapts to your life.
Proactive Planning for an Active and Engaged Life
Staying active with a wheelchair requires proactive planning and problem-solving. Start by defining what you want your life to look like and what activities you wish to continue or begin. Discuss these goals with your doctor, and if possible, work with an occupational therapist (OT), whose services are often covered by insurance.
Occupational therapy is fundamentally about solving practical problems, from the sequence of getting ready for work to navigating public transportation or grocery shopping. An OT can help you break down any task into manageable steps, fostering greater independence. For daily outings, a little strategic thinking can make a big difference, such as calling ahead to new locations to check accessibility and always being prepared for weather changes with extra layers or medications.
Navigating Social Interactions and Building a Support System
A challenging aspect of transitioning to a wheelchair can be managing social interactions and the reactions of others. While most people are well-intentioned, their comments can sometimes be unintentionally discouraging or express misplaced sympathy. It can be helpful to prepare polite but assertive responses that redirect the conversation toward your capabilities and the positive role the wheelchair plays in your life.
Connecting with others who have gone through a similar experience is invaluable. Online forums like ActiveMSers.com or local support groups through the National Multiple Sclerosis Society can provide a space to share strategies and successes. Learning how others have adapted and thrived can be a powerful source of inspiration and practical advice for your own journey.
Maintaining Physical Health and Preventing Complications
Using a wheelchair introduces new considerations for your physical well-being. It is essential to focus on maintaining good posture and performing regular pressure relief maneuvers, such as wheelchair push-ups or using a tilt function, to prevent pressure injuries or skin breakdowns.
Continuing with a tailored exercise program, developed with a physical therapist, is also vital to maintain upper body strength, cardiovascular health, and overall flexibility, which can help with transfers and daily mobility. Furthermore, be mindful of managing common MS symptoms like spasticity in the context of seated mobility, as this may require adjustments to your medication or stretching routines.
Conclusion: Redefining Possibilities with Confidence and Support
In conclusion, adopting a wheelchair when living with MS is not an endpoint, but a transition to a different mode of living that prioritizes independence and activity. The key lies in selecting the right equipment, embracing proactive planning and problem-solving, developing resilience in social situations, and building a strong support network.
By shifting the perspective from limitation to liberation, individuals can continue to lead fulfilling, active lives, exploring new opportunities and maintaining cherished activities with confidence and grace.
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