When, let’s call her Becky, was diagnosed with Multiple Sclerosis about 18 years ago no one knew what course it would take. That is one of the frightening things about this disease. The doctors can’t tell you what particular symptom to be ready for because to our understanding there is no road map to follow.
Becky first noticed numbness in her fingers which lasted several days and stopped. Next was the jaw drawing up on one side and the doctor diagnosed Bell’s palsy. The jaw returned to normal and then the knees went weak, first one and then the other. At first a therapist said Becky had a mobile knee cap but when the problem left one knee and went to the other and she lost bladder control while on a picnic one day he sent her on to the ER. Even then the diagnosis wasn’t clear. The medical team gathered round and discussed the problems and pretty much decided she had a tumor on her spine causing the problems. With that they decided to do an MRI. Becky was terrified with that ordeal but came through like a trooper. Waiting to know is always the hardest. By early the next morning the answer came and the brain scan showed she was dealing with Multiple Sclerosis.
She quickly went from unbalanced gait to walking with a cane. Then she would lose her balance while trying to stand with a walker. There were times when she couldn’t get up out of bed and that was treated with steroids. The magic steroids would surge through her body and up out of the bed she would come and even be able to walk pretty normal for a few days. Of course the steroids could not be continued because over all they would end up doing her more harm than good. After about a year of struggling to stay on her feet it was decided a wheelchair would be the safer equipment for her to use. So, Becky began her years of life in a wheelchair. She was but 26 when first diagnosed and now she is 42. The disease seemed to find its most prominent route for her and left Becky immobile from the waist down and has remained that way for several years.
She has experienced life in a wheelchair day in and day out for many years. At first she used a manual chair, then progressed to electric and did pretty well getting around except when shopping. The shopping experience is not easy when you are maneuvering in a wheelchair.
Trying to get into many stores is only the beginning of the problems. First comes trying to find a wheelchair space to park the van. It is a fact that many unthinking people park in these places for a quick shot at the store and leave those who really need the space making trips around the parking lot in search of a roomy place to park. You see the van spaces marked for those with disabilities are for vans. There is a reason for particular spaces marked for vans. Some of them have side doors that need to be opened and a lift pulled out to allow the wheelchair user to be lowered down while setting in the chair.
So many times Becky has found a wheelchair space only to come back out of the store and find a vehicle parked on the striped lines right beside her van. No way to get in the van then until the person who decided to block access to the side door and lift comes back and moves their vehicle. By the way, one of the worst things for a person with MS is heat. So many times Becky has come out of the store into summer heat to find no way into her van and then rather than wait she would have her driver back the van out into the lane of the parking lot so she could get into the cool air in the van.
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