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The Wheelchair in the Room: Autonomy and Dependence, Celebration and Mourning

Question: 

 I’ve been using a walker for some time but I’m falling more and more frequently.   I used to enjoy walking my dog and browsing at flea markets, but as the months go by the distance I can walk is becoming shorter and shorter.   My Doctor, husband, and I all agree that it’s time to start thinking about some kind of wheelchair or scooter.   My doctor ordered a physical therapy evaluation, but it is more than two months away.  In the meantime, I’ve been doing my own research online.  There is an incredible amount of info online, but none of it seems to fit my unique needs.  Sometimes I need someone to push me, other times I can propel myself by wheeling or “walking” my feet as I remain seated.  I’m worried that even the physical therapist won’t be able to determine what kind of equipment is right for me!  I’m too old for the “young adult” programs, but I’m nowhere near “elderly.” Sometimes I can walk short distances, and other times I can barely hold my head up.   Where do I start?

Answer: 

:  The decision to use a wheelchair for mobility can be one of the most difficult milestones faced by adults with Mito and other progressive neuromuscular diseases.   In many cases, the individual has been experiencing difficulty getting around for quite some time.  Mobility devices, such as canes, walkers  and wheelchairs frequently mark the transformation from “invisible” to “visible” illness or disability.   Many people with Mito or other neuromuscular diseases experience fluctuations in strength, endurance and balance. Many young adults with Mito use a cane at the beginning of the week and rely on a wheelchair by Friday.  They rest and rebuild strength over the weekend, and be able to go back to using a cane at the start of the next week.  For more information about the spectrum of mobility devices available, please refer to the MitoAction article found here.

Emotional adjustment

As you can imagine, trying to maintain as much mobility as possible when living with a disease that has no predictable course and wide fluctuations in functional status can be extremely stressful.  The article “Will I End Up in a Wheelchair?” by the National MS Society discusses some of these emotional adjustments that people may experience.   The article emphasizes the importance of taking time for grieving, conserving energy, striving to gain and continue independence, and finding ways of turning embarrassment into feelings of empowerment. 

Reactions from friends and family members  

Expect that the adjustment to “yet another change” will take time.  If you’ve been quietly managing an “invisible” illness for years, acquaintances and extended family members may react quite strongly the first time they see you sitting in a wheelchair or riding on a mobility scooter.

“Really…a wheelchair?  Maybe if you exercised more to build up endurance…”  Adjustment and emotional reactions may be a combination of positive and negative.  I felt a bit relieved that no one would be able to see the outline of my incontinence brief if I was seated in a wheelchair, and I felt a bit embarrassed and ashamed thinking, even for a moment, that sitting in a wheelchair could affect my life in a positive way.  “Oh no, I’m happy about using a wheelchair…is there something wrong with me?”  Absolutely not!  If you’ve been watching your world gradually becoming smaller and smaller because of limited mobility, using a wheelchair might be the best experience you’ve had in quite some time.  That’s a reason to celebrate!  When was the last time you were able to go out to a movie or shopping mall, stroll through a park with a friend, or enjoy a vacation?    

Anticipate Negative Experiences…

Eight years ago, I rode a grocery store scooter for the first time.  It was late in the evening.  I was exhausted, but I didn’t have a choice.  Walking from the car to the store was painful and frightening, as I was experiencing myoclonus and balance issues.  As I walked to the service desk to request the scooter key, I could feel my face glowing beet-red with embarrassment.  Once I started shopping, I came face to face with “real” disabled people in every aisle.  I did my best to ignore the eye-rolling, staring, throat-clearing and mumbling I encountered dozens of times.  Then, I encountered my biggest fear…I needed an item on the top shelf, and needed to stand up to reach it. I heard a lady say “You should be ashamed of yourself. There are people here who really need that!”  I had reached my limit; I was done.  I drove right over to the checkout line, paid for my groceries, staggered to my car and drove home, crying the entire way.

And Positive Experiences, too,

My power wheelchair arrived on a Friday afternoon.   While I was shakily practicing my maneuvering in the driveway, my children arrived home from school.  With my son in my lap and my daughter skipping alongside, we took a stroll around the block.  When we arrived back home after our excursion, I checked the mailbox and removed its contents.  Suddenly, it hit me:  I had not been able to retrieve the mail for well over a year.   At that moment, I realized that my condition had limited my activities far more than I had acknowledged, and that the power chair was far more liberating than I had ever imagined.

More Information 

WheelchairNet.org is an online community for people with disabilities and their families and friends.  As the name suggests, there is a great deal of information for people who use wheelchairs or other mobility devices.  A wealth of information about every aspect of wheelchair use, education and research, function, development, history, international accessibility and applications, and more can be found in Wheelchair University

Another great article about emotional adjustment can be found here.