Hello, my name is Christina Marie Parissi. I am 35 years old and I was born with spastic cerebral palsy. My medical diagnosis is called: spastic quadriplegia. I am NOT a paralyzed quadriplegic. Quadriplegia in this case means that the condition affects all four of my limbs. For more information about CP, please visit United Cerebral Palsy
Why am I Here:
There are many so called “treatments” for cerebral palsy. It’s a bit hit or miss. Like a lot of medical treatments you have to meet certain conditions to “qualify” for treatment. Unfortunately, I do not qualify for any of the more aggressive treatments. I currently take baclofen 3x daily at 20 mg. I have been taking baclofen (my dosage was recently increased) for 3 years now. It doesn’t really help much.
I believe that it is time to stop treating the symptoms of CP and start attacking the condition at its source. The brain.
Why is there not much interest in attacking CP at its source?
I am so glad you asked that question! I’m not a doctor or medical researcher. For about 10 years now, I have spent my free time searching for anyone who believes neurotechnology is the key to attacking CP… Except, I can’t really find anyone. Every website I have ever found basically claims that since every single case of CP is different, it is much too complex to figure out.
Also, despite being one of the most prevalent conditions on the entire planet, CP doesn’t get much exposure, except for inspiration porn. I know it shouldn’t make me angry but we don’t exactly have tons of celebs or prominent advocates advocating for money for research. Usually, people advocate for educating the public about CP and common sense things like, “What to say and what not to say to a person with CP,” or “Don’t stare at people with CP when they have instances of spasms or drooling” This is all well and good but doesn’t do anything to help combat the condition.
What about FDA clinical trials?
Doctors and common people alike have always claimed that younger people heal better and faster than older people. I check the FDA clinical trial website monthly. There are a limited number of trials investigating CP and all of those trials have cut off ages of 12 or younger. Many trials deal with spastic diplegia or hemiplegia which is just different words for the number of and which limbs are affected. Many of the studies are focused on children with CP that can still walk. I have never walked independently. I had a power wheelchair when I was three years old. It is almost as if doctors have forgotten that children grow up and still have CP. You’re not just born with it and are cured when you become a teenager.
What challenges are you facing that impede your quest for answers to CP?
The biggest challenge is financial. Currently, the US government only allows a person on social security income to make $1,057 a month. If you make more than that in a month, they decrease your benefits by more than half. I hold a BA in Communication from Worcester State University. I have a well-paying job that I can only work at two days a week because I cannot go over the $1,057 monthly cap. I get government health insurance. If I were to go over the cap to even try and purchase the OpenCBI hardware, I would lose it. If I lose my health insurance, I also lose access to my Personal Care Attendants (PCA’s) who help me with my activities of daily living. (ADL’s) Keep in mind that my income must pay rent, buy food, medication, bills and other necessities for my husband and I.
Are you begging for money to buy OpenBCI hardware?
Not at all. I am looking for someone or a group of people who believes in the following:
- Cerebral Palsy must be investigated and researched at the source of the cause: The Brain.
- That there is the possibility that neurological implants can act as a bypass for damaged and/or dead pathways and brain cells.
- That data must be gathered from those with all types of CP as well as the able-bodied for comparison.
- While the above routes are being investigated, affordable neurofeedback and other alternatively controlled devices can, will, and must be used to improve the lives of those of all ages living with CP.
- That there will be a day when no one on the face of the earth has to live with CP, no matter how complex and incurable others say it is!
Who can help me in my quest?
Unfortunately, even though I love technology and am hell-bent on eradicating CP, I am great at ideas but not necessarily all the stuff needed to accomplish them. I need programmers, engineers, medical researchers and other super smart individuals to join me on my quest.
If you are interested in supporting or participating in my efforts, please contact me at: [email protected] with the subject line, “Hack CP”
I’m with you Christina !!!!