Intro... How CP Affects Me

I haven’t had an active blog in years but I really did enjoy having one and so here I am again.  I’m not sure if anyone will read this but I’m going to share some of my daily adventures with you and hopefully we can have some deeper conversations about what it means to be a person navigating the world with a disability.  I have always believed that the way to approach things I don’t understand is to learn about them.  So. I am hoping we can do that together.  I am 45 years old and I live with spastic quadriplegic cerebral palsy.  Which is just a fancy way of saying that I have a brain injury that affects the way all four of my limbs move. People have cp from birth or very early in life (before the age of three). Or it wouldn’t be considered cp anymore.    This doesn’t mean you are diagnosed by then it only means the injury occurred by then. There are other types of cerebral palsy and other affects depending of which part or parts of the brain are injured.  What is important to remember is that cerebral palsy is a kind of umbrella term that incompasses many different types of affects.    Some people are affected on one side of their body, some people only in one arm or leg. Some people use a wheelchair or a other device to get around because they cannot walk at all.  Some people have difficulity  with speech.  Some people have difficulty learning things For me, I struggle most with balance when standing or walking.  My body moves very differently than is typical.  Cerebral palsy affects my stamina which is another fancy word that means how far I can go before I need to take a break. I’ve read in many different places that people who have cp use three to five times more energy when the do physical things than a person without cerebral palsy.  So it takes me longer to do certain things perhaps but with very few exceptions I do just about everything most other people do although   I may do differently than people would expect.  I use a walker a scooter and sometimes a wheelchair to allow me to live my best fullest and most independent life.  Here are some other other things I have been asked often. Cerebral palsy does not get worse  but it’s affects on a person can change as they age, the same way all of our abililities change as we get older.  It doesn’t affect life expectancy but some of the health issues a person may have because they have  cp can, for example some  people may have difficulty with swallowing or breathing or moving or communicating or other things may affect how long they live.  These are just the examples I can think of and what someone’s journey through life may look very similar or very different than mine and yet we can have the same diagnosis on paper.  I am here to share my experiences because that’s all I know. My goal is to continue a conversation about daily life with disability.  I hope to expand on some of the challenges I face with humor,passion love, and coffee because everything is better with coffee.