More than anything, my husband would love to be able to walk again. We pray every day for the miracle. And we live our life in the meantime. Below are things you may not have known about living life in a wheelchair or being a paraplegic.
1. It’s more than just not being able to walk. Kind people want to make themselves feel better about their loved one being a paraplegic. So they say things like, “Well, he can do everything else. He just can’t walk.”
It’s not true. There is so much more to being paralyzed than not walking.
When you have a spinal cord injury, you may not have control of your bladder and bowel movements. You may have to do bowel training and use a catheter every 2-3 hours, around the clock. Your sexual function may be gone or diminished. It’s learning to drive with your hands instead of your feet. The good news is it can be done and you can still live a life full of as much adventure as you would like!
2. Because of frequent catheing (putting a tube in to express urine), urinary tract infections are common. My husband, Arthur, has one every 6 weeks or so. They give him fevers, chills, night sweats. And each time a stronger medication is needed to knock it out. He’s sick in bed for several days when he has a UTI. This weakens him and he needs to build up his strength again. So he must have patience with himself and as his caregiver, I must also have patience with the process.
3. They fall periodically. Recently on the way to meet me at a function, my husband fell twice while navigating speed bumps in a parking lot that wasn’t set up for wheelchair use. Ideally, a paraplegic is strong enough to get him/herself back in the wheelchair. But not everyone is strong enough. And having metal rods in your spine limits range of motion.
He’s fallen while going up a ramp onto the sidewalk, he’s fallen because he leaned forward too far in his wheelchair and was top heavy, he’s fallen transferring from wheelchair to the commode. Sometimes a neighbor helps, sometimes a stranger, occasionally he calls the paramedics. It’s a jarring experience and can set him back a day or more.
It’s a good idea to have a backup plan like a device that will detect a fall or has a button that the paraplegic can push. My husband keeps his phone handy all the time.
4. The family may not support your independence. My goal was to help my husband be as independent as possible. That meant learning to go shopping by himself, learning to cook and learning to drive again using his hands instead of his feet.
Not everyone was supportive of my husband getting his driver’s license, and with good reason. Aside from the accidents he had before he became a paraplegic, at 70, his reflexes are not as sharp as they used to be. But that would be true whether or not he was a paraplegic. I think he is more careful now than he was before the motorcycle accident that left him a paraplegic.
5. Getting a license to drive a handicapped vehicle has its challenges and financial considerations, at least in the State of Maryland. The driving instruction course was almost $1,000. He had to buy a handicapped vehicle with hand controls. We were fortunate to find used one reasonably priced van on Craig’s List.
My husband had to practice using his hands and get used to not putting on the brake with his feet. Fortunately, he has used a stick shift and this helped his brain process a little easier.
A medical doctor needs to give the OK that he can operate a vehicle. An instructor inspects the vehicle to make sure it safe for the paraplegic. Among the changes to make our van ready: a piece of metal in front of the pedals to avoid his foot sliding forward onto one of them by accident, a strap installed to put around his chest so he doesn’t list forward or side to side. A turning knob attached to the steering wheel. Each needed to be put in by an authorized mechanic who specifically works on handicapped vehicles costing an additional $500.
It was a slow moving process that took almost a year. But independence was worth it!
6. Not all of your costs are covered by your health insurance. Things like gloves (necessary to keep sterile when catheing), adult diapers and wipes, chucks (bed pads), laxatives and suppositories are all out of pocket. A sliding shower chair and drop arm commode may also not be covered because they are specialty items. Or they may be partially covered like catheters. We are grateful that my husband has Medicare and AARP.
7. Everything takes 10-20 times longer to do and it’s exhausting! That’s just the truth of it. When we plan our day, itemizing all the little things that need to be done and time out his bathroom breaks, we can have a very pleasant outing!
Angela DiCicco 7/11/19
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