I HAVE CEREBRAL PALSY

"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 should be given more 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 stand lift and I need assistance in the bathroom. Sometimes they need to be given background information. It is up to me to educate them about my CP.

Cerebral Palsy is a disability 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 helping me out of bed I tell them I do not have balance. They cannot let go of me. I ask them to pull me back on the bed. I do not like to feel that I  am sliding off the bed. Feeling like I am falling is just as scary as having it happen.  I once told a new aide not to let go of me when my aide was helping me to bed. She didn't believe me.  She let go. I fell over on the bed. Maybe she just wanted to see if I was really telling the truth.

 I am one of the 17 million Americans who have 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 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.  

For more information go to http://ucpsdfoundation.org/

A HUMBLING EXPERIENCE

Being on Medicare/Medicaid is a very humbling experience. It is difficult for my family because they are now responsible for whatever bills my insurance will not pay for.

 I loved to go out and have a drink and a good meal every weekend. I did whatever I wanted to do. I didn’t think about money. I was spoiled.

I have always been physically dependent on caregivers. I learned quickly, when I moved here, that my needs may not be as important as the needs of another resident. I am not the most important person anymore.

 I have become financially dependent as well. I worry that I have become a burden to my family because they have to pay for the things I am unable to pay for. I know it is not fair to them. I cannot earn much, but I am trying to get writing jobs. I make calls, people express interest, I follow up with another call. I am told someone will get back to me, but the call never comes.

I have stopped going out. I don't use my phone much. I am trying to do everything I can to save money.

My chair is very old. I worry it will stop working I know residents who have been waiting more than six months for parts and chairs. The government does not;t think residents of nursing homes need power chairs. It sucks if you have to be pushed around because your power chair is not working. Power chairs mean freedom to those of us who use them.

The dentist that comes here does not x-ray a patient’s teeth. This concerns me because I had issues years ago as a result of my teeth not being x-rayed every year. If I want good dental care my family will have to pay for me to see a dentist. Oral hygiene is not a priority here. There have been times I have had to fight to get assistance with brushing my teeth. I am not proud of it, but I do what I have to make sure my needs are met.

What happens when the proposed state block grants run out? If all the people with disabilities needs have not been met,? Will they just be out of luck?

I am sure the legislators who want to cut services have never been physically or financially dependent on anyone. They have no idea how degrading and demeaning it is. It makes you feel worthless because it lowers your self-esteem.

Click on the link for the latest information from  The Consortium For Citizens With Disabilities, an organization that seeks to ensure that the 56 million disabled Americans have what they need to be fully integrated into society. The CCD  is seeking to protect. Medicaid and the Affordable Care Act, http://c-c-d.org/rubriques.php?rubpage=42 from proposed budget cuts/

I have known many people who are on Medicaid. I thought it would never happen to me. Now, it has. It is a very humbling experience.

I'm still here. I will not give up. .Like all disabled, Americans, I will keep fighting for my rights. I will keep fighting for the kind of life I deserve.