Friday, March 24, 2017


Image Courtesy of the March is Cerebral Palsy Awareness Month Facebook Page
:"So, what do you have, MS?" This is the question I am asked the most by a new aide. New aides often assume I have Multiple Sclerosis because that is why many of the younger residents are here. 

New aides are given very little information about the residents they care for. The only thing they may have been told about me is that I  use the sit and stand lift and that I need assistance in the bathroom. Sometimes they are not given any background information at all. When that happens it is up to me to educate them about my CP.

Cerebral Palsy is a disability that's caused by the brain being damaged or not properly developed.  Damage can occur before, during or shortly after birth.  Cerebral Palsy impacts a person's movement, coordination, and balance.  In some cases, a person's speech is affected.  

New aides tell me to relax when they are dressing me.  I have Spastic Cerebral Palsy in all four of my extremities.  The spasticity makes my limbs tight.  It is difficult to move. A new aide makes me nervous. That makes the situation worse.

When a new aide is getting me out of bed I tell them I do not have balance.They cannot let go of me. I also tell them to pull me back on the bed. I do not like to feel as though I am going to slide off of the bed. Feeling like I am falling is just-as-scary as actually having it happen.  I once told a new aide not to let go of me when she was putting me in bed. I guess she didn't believe me because she let go. I feel over on the bed. Maybe she just wanted to see if I was really telling the truth.

No, I do not have MS. I am one of the 17 million Americans who has Cerebral  Palsy. It's not a disease. You cannot catch it. It is a disability. It would be helpful if this facility gave new aides more information about the people that they care for.. I will continue to try and educate the aides who care for me. Some will listen, Some won't. I will keep trying.

I look forward to the day when we won't need to raise awareness. The day when no one will care what someone's disability is. 

March is Cerebral Palsy Awareness Month.  March 25th is Cerebral Palsy Awareness Day. Wear green to show you support Children and adults with CP.  

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