Do you have difficulty walking or getting around? Have you considered using a wheelchair, walker or cane? Making the decision to use a walking or mobility aid can be difficult. You’re not alone. Here, PatientsLikeMe member Cathy living with multiple sclerosis shares about how she overcame the fear of losing her independence and how using a cane is helping her “live the kind of life we all deserve.”
When you’re first diagnosed with multiple sclerosis, it’s typical to have questions and concerns that are overwhelming and cause great anxiety. In the age of “fake news,” this anxiety increases when we’re bombarded with television programs that characterize disability as a downward slide. It doesn’t have to be this way. A positive attitude and a bit of determination can help us live the kind of life we all deserve.
One of the greatest fears for many after being diagnosed is if MS will progress to the point of losing our independence. After enjoying a life of self-reliance, the thought of depending on assistive walking devices such as canes, walkers, scooters or wheelchairs is frightening.
I was twenty-eight years old when I was diagnosed. My legs and hands were weak and numb, and my balance was so bad that an ignorant passerby accused me of being drunk. I refused to consider using a cane. I remember taking a walk with my father, his legs twice as long as mine, and trying to keep up with his pace. It was a losing battle. When we crossed the street he threw his long arm out in front of me like a crossing guard, silently knowing how slowly I walked and how long it’d take to cross the street. I’m sure his heart was heavy, and being with him at that moment, my heart was heavy, too.
On accepting a new normal
I was experiencing debilitating MS fatigue, so refusing to use a cane only increased the exhaustion. Later, I learned that favoring a strong leg over a weaker one is not only tiring but also increases the chance of falling and being injured. I had to end my stubbornness for safety’s sake.
I learned that lesson the day I walked through a crowded restaurant and my legs buckled under me. I fell hard on the wooden floor and my friends helped me to my feet. Patrons all around us glared and I was completely mortified. It was at that moment I admitted to needing help.
My friend Abi Budd has a similar story. It took her awhile to come to terms with using a mobility scooter. She struggled with walking and became terrified of her inability to go from one place to another without falling. Her denial was affecting her lifestyle, but her determination and positive attitude led to acceptance; a chair would help her regain the freedom she once knew. She has an infectious attitude.
The same is true for another friend, Debbie Petrina. She doesn’t allow her MS to stop her but embraces the use of assistive walking devices to give her the freedom she desires. “Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk.”
Learning to accept your new circumstances and relying on assistive devices is a surefire way to live the best life possible. I’m not saying it’s always easy, I’m just saying it’s worth it.
Cathy’s picks: Helpful resources
- Managing MS: Straight Talk from a Thirty-One Year Survivor by Debbie Petrina (Author, trained MS counselor, MS survivor)
- Budding Communications by Abigail Budd (Accepting the Need for Wheels! ) (a writer and active member of the MS community in the UK shares her experience)
- National Multiple Sclerosis Society (Staying Mobile) (Tips for staying mobile and active)
- What is it Like to Use a Wheelchair? (from slate.com, January 2014)
- Active MSer by Dave Bexfield (Cathy highly recommends Dave’s posts about traveling in a wheelchair)
- Wheelchair Kamikaze by Marc Stecker (The Rants, Ruminations, and Reflections of a Mad MStery Patient)
Do you use a cane or other type of mobility aid? How and when did you make the decision to start using one? Join PatientsLikeMe and share your experience with the community.
Share this post on Twitter and help spread the word.
