Cerebral Palsy awareness month 2016

[funnylegs4]

A little something I wrote on my film social media site here https://plus.google.com/u/1/b/103662...ts/cCu9fGAnexF about Cerebral Palsy awareness month 2016. See below.

March is Cerebral Palsy awareness month. Many of the characters in my films have Cerebral Palsy. Cerebral Palsy (often shortened to "CP") is a brain injury that happens before, during, or shortly after birth. It can be caused by lack of oxygen to the brain or conditions such as a fetal brain hemorrhage, which is similar to a stroke, but in most cases the reason for the brain damage is unknown. Cerebral Palsy affects the motor areas of the brain in a vast amount of ways depending on where the damage in the brain occurs. It usually causes the muscles to be too tight (spastic) or too loose because the brain signals are constantly being misfired throughout the person's entire life. The misfiring can lead to issues with balancing, coordination, speech, proprioception, body alignment, and even a life long retaining of certain infant reflexes such as the Moro Reflex. The Moro Reflex is the startle reflex in babies and usually disappears when the baby is under 6 months of age but people with CP can have this reflex as children and adults. It is essentially a built in pre programed fear of falling. CP can affect one side of the body (called hemiplegia) or both sides of the body. Every case of Cerebral Palsy is unique and can range from being so mild that it is almost unnoticeable to being so severe that the person uses a wheelchair full time. Most people with Cerebral Palsy in media are portrayed as having the more severe types so we at Crip Video Productions are interested in raising awareness of the experiences of those with more mild to moderate cases of CP. A lot of people still don’t seem to realize CP can be mild. I think the internet is a great place to show the reality i.e the good, the bad, and the ugly of living with disabilities and it is my hope that my films do just that. I was also surprised to learn that March is Traumatic Brain Injury awareness month. In October 2015 I gave a talk about Traumatic Brain Injury http://cripvideoproductions.tumblr.c...y-presentation where I showed the trailer for Crips Not Creeps http://www.cripvideoproductions.com/cripsnotcreeps.php I was surprised to discover the many similarities between Cerebral Palsy,Traumatic Brain Injury and Stroke. I met people with types of brain damage that I had never even heard of before, such as brain damage that effects sleep patterns and thalamus damage that effects sensory processing. These types of brain damage are almost completely invisible. The above information can be found on our website here as well http://www.cripvideoproductions.com/about.php

[Earth Mother 2 Angels]

((((((funnylegs4)))))) ~

Thank you so much for letting us know that this is Cerebral Palsy Awareness month.

I appreciate your discussion of the various ways CP manifests.

Just last week, Jon's primary care physician added two new diagnoses to Jon's already long list:

Cerebral Palsy
Paraplegia (undefined)

In my experience, physicians tend to use "Cerebral Palsy" as a generic label for an undiagnosed condition, such as my sons' conditions. It's like an umbrella or a catch-all diagnosis.

Both of my sons were delivered with forceps, which could have caused brain injury at birth. However, most physicians agreed in the early years that my sons had a genetic disorder. In later years, my niece gave birth to a son, with the same issues as my sons had/have, which further solidified that theory for me.

Of course, it's entirely possible that the cause could have been both genetic and birth trauma.

What are your thoughts about the use of CP as a generic label?

Thank you for all that you do to bring awareness of CP through your films, your example, and your advocacy.

Love & Light,

Rose

[funnylegs4]

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((((((funnylegs4)))))) ~

Thank you so much for letting us know that this is Cerebral Palsy Awareness month.

I appreciate your discussion of the various ways CP manifests.

Just last week, Jon's primary care physician added two new diagnoses to Jon's already long list:

Cerebral Palsy
Paraplegia (undefined)

In my experience, physicians tend to use "Cerebral Palsy" as a generic label for an undiagnosed condition, such as my sons' conditions. It's like an umbrella or a catch-all diagnosis.

Both of my sons were delivered with forceps, which could have caused brain injury at birth. However, most physicians agreed in the early years that my sons had a genetic disorder. In later years, my niece gave birth to a son, with the same issues as my sons had/have, which further solidified that theory for me.

Of course, it's entirely possible that the cause could have been both genetic and birth trauma.

What are your thoughts about the use of CP as a generic label?

Thank you for all that you do to bring awareness of CP through your films, your example, and your advocacy.

Love & Light,

Rose

You're very welcome! I'm always thrilled to help!! Wow! They think Jon has Cerebral Palsy? Really? As far I know Cerebral Palsy is NOT genetic. However people can have genetic risk factors that can lead to Cerebral Palsy. I heard once that Cerebral Palsy is caused by genetic risk factors about 2% of the time. These genetic risk factors have to do with the Corpus Collusm part of the brain being underdeveloped, or often involve blood vessels so the cause of the CP in these cases is usually a brain bleed or blood clot like a stroke. I have also heard of 2 people in the same family having CP if they are twins and the blood flow to the twins' brains in the womb is not good. Yes Cerebral Palsy can be a bit of a catch all, but its usually only a catch all for brain injury during a particular period like described above. Can they do an MRI to check for CP in Jon? Usually the brain damage does show up on an MRI but not always. Dystonia can also look the same as spastic Cerebral Palsy and the conditions can be mistaken for each other in rare instances. My best guess is if Jon does have Cerebral Palsy he has both CP AND a genetic condition. I say this because you said Jon's condition has been progressive whereas Cerebral Palsy is not progressive. Cerebral Palsy can be present in people who have other conditions. I have seen people who are albino and have other rare conditions and Cerebral Palsy together. If Jon does have CP I would guess that would explain the source of his seizures as Cerebral Palsy and seizures very often occur together. I'm one of the lucky ones who does not have seizures but one of the actors in my films has CP and seizures. My guess is Jon has a mixed form of CP if they say undefined in the diagnosis. I would suggest doing physical therapy with Jon if he has Cerebral Palsy as the brain has an amazing ability to rewire itself and this could make Jon more comfortable as he gets older. Is there any particular info on CP you would like me to find for you?? Can I help you??? I have a deep fascination with my own condition so I always internet search it LOL. Glad that business with the nurse was sorted out!! So glad the nurse didn't forget you guys!

[Earth Mother 2 Angels]

((((((funnylegs4)))))) ~

Thank you for your thoughts.

Jon's doctor is a family physician, not a neuro, and I think he just decided to throw another label on the list of Jon's diagnoses. He's using CP as a generic term for Jon's condition. He didn't ask me or consult me about adding CP to the list, which annoys me a tad.

I think the jury is in (for me anyway) that my boys' condition is genetic, given that my niece's son was also born with the same anomalies. My paternal grandfather was adopted, and we have some suspicions about his lineage. Conveniently, his birth records were lost in a courthouse fire. He was also gassed in WWI, so there could be something there which altered DNA. It's all supposition, of course.

I think that the doctor added "paraplegia" as an explanation for Jon being non-ambulatory and/or non-weight bearing. The "undefined" part is probably linked to the fact that we don't know the underlying cause of Jon's condition.

Thank you for offering your research assistance, but I'm not convinced that Jon has CP. I think his doctor, like others before him, just wanted to attach a label to Jon's diagnosis. Maybe it makes them feel better. ???

Love & Light,

Rose

[funnylegs4]

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((((((funnylegs4)))))) ~

Thank you for your thoughts.

Jon's doctor is a family physician, not a neuro, and I think he just decided to throw another label on the list of Jon's diagnoses. He's using CP as a generic term for Jon's condition. He didn't ask me or consult me about adding CP to the list, which annoys me a tad.

I think the jury is in (for me anyway) that my boys' condition is genetic, given that my niece's son was also born with the same anomalies. My paternal grandfather was adopted, and we have some suspicions about his lineage. Conveniently, his birth records were lost in a courthouse fire. He was also gassed in WWI, so there could be something there which altered DNA. It's all supposition, of course.

I think that the doctor added "paraplegia" as an explanation for Jon being non-ambulatory and/or non-weight bearing. The "undefined" part is probably linked to the fact that we don't know the underlying cause of Jon's condition.

Thank you for offering your research assistance, but I'm not convinced that Jon has CP. I think his doctor, like others before him, just wanted to attach a label to Jon's diagnosis. Maybe it makes them feel better. ???

Love & Light,

Rose

You’re welcome Rose! Oh I see! You definitely need a neurologist to confirm Cerebral Palsy! My family had me see a neuro. When I did the TBI presentation the person in charge said primary doctors should not be diagnosing neurologic conditions because they often misdiagnose it. People end up thinking they have neurologic conditions by mistake and end up taking meds etc that they don’t actually need. The only things that seem Cerebral Palsy like in Jon are the seizures because the brain damage in CP can cause seizures, and maybe the way he speaks in my humble opinion. If you want to confirm CP tell Jon’s neuro. As for paraplegia is Jon technically paralyzed? If not the doc just basically means “does not walk” when he says that like you said. The doctor wants to give you some sort of answer because when doctors don’t have answers they usually feel like failures, especially with the disabled because they cannot “fix” the disability.

[Earth Mother 2 Angels]

((((((funnylegs4)))))) ~

Jon (and his brother, Michael) has been seen by a multitude of neurologists in his lifetime. When we were at Ohio State, they were enrolled in a state of the art program, where neurologists and specialists worldwide often visited for conferences. They were of great interest, since they are brothers, with the same underlying condition. I would think that at least a hundred neuros, if not more, have seen my sons in the last 46 years. None of those neuros solidified a CP diagnosis for them.

We've been through all of the neuros, who serve our hospital, and none of them is willing to take Jon as a patient outside of the hospital setting. They don't like me. They always offer trying a different seizure med, and I say "no." He doesn't need to be weaned off of meds he's been on for the majority of his life to try something different. His seizures are essentially controlled, except when antibiotics interfere with them. So, they don't want to deal with me, because I'm "difficult," and "I know everything." Yes, I've been told that to my face by a few of them.

Jon's family doc just wanted to categorize Jon's condition, and he used CP as a generic category. And this is common in my experience with general practitioners and even other specialists.

Any kind of brain damage can initiate seizures, so my boys' seizures correlate to their overall neuromuscular disease, whatever it is. I don't associate seizures specifically with CP, as I know that there are many causes for them, often those causes are unknown.

Jon's legs are not paralyzed; he has feeling/sensation in his legs and feet. He was ambulatory until 2000, with an awkward gait, but he managed to walk fairly good distances in his youth. He used a walker in his young adult years, then a wheelchair. Then he lost his ability to bear weight and walk. This is the progressive nature of his condition.

Yes, doctors just want to fix things, and sometimes attaching a label just ties it up in a nice package to be tucked away. They need an explanation, so they take the generic one, when no specific one exists.

On Michael's death certificate, one of the causes of his death was listed as: "mental retardation." He died of septic pneumonia associated with intractable seizures for 22 years. People, who have developmental disabilities, don't die from being developmentally disabled.

Of course, this was the grossest and most painful generic label ever attached to my children. It still stings.

But that isn't something that doctors think about typically. Sad to say, but true.

Love & Light,

Rose

[funnylegs4]

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((((((funnylegs4)))))) ~

Jon (and his brother, Michael) has been seen by a multitude of neurologists in his lifetime. When we were at Ohio State, they were enrolled in a state of the art program, where neurologists and specialists worldwide often visited for conferences. They were of great interest, since they are brothers, with the same underlying condition. I would think that at least a hundred neuros, if not more, have seen my sons in the last 46 years. None of those neuros solidified a CP diagnosis for them.

We've been through all of the neuros, who serve our hospital, and none of them is willing to take Jon as a patient outside of the hospital setting. They don't like me. They always offer trying a different seizure med, and I say "no." He doesn't need to be weaned off of meds he's been on for the majority of his life to try something different. His seizures are essentially controlled, except when antibiotics interfere with them. So, they don't want to deal with me, because I'm "difficult," and "I know everything." Yes, I've been told that to my face by a few of them.

Jon's family doc just wanted to categorize Jon's condition, and he used CP as a generic category. And this is common in my experience with general practitioners and even other specialists.

Any kind of brain damage can initiate seizures, so my boys' seizures correlate to their overall neuromuscular disease, whatever it is. I don't associate seizures specifically with CP, as I know that there are many causes for them, often those causes are unknown.

Jon's legs are not paralyzed; he has feeling/sensation in his legs and feet. He was ambulatory until 2000, with an awkward gait, but he managed to walk fairly good distances in his youth. He used a walker in his young adult years, then a wheelchair. Then he lost his ability to bear weight and walk. This is the progressive nature of his condition.

Yes, doctors just want to fix things, and sometimes attaching a label just ties it up in a nice package to be tucked away. They need an explanation, so they take the generic one, when no specific one exists.

On Michael's death certificate, one of the causes of his death was listed as: "mental retardation." He died of septic pneumonia associated with intractable seizures for 22 years. People, who have developmental disabilities, don't die from being developmentally disabled.

Of course, this was the grossest and most painful generic label ever attached to my children. It still stings.

But that isn't something that doctors think about typically. Sad to say, but true.

Love & Light,

Rose

They said WHAT??? People do NOT die from mental retardation! I want to give them a shift kick in the (BLEEPS) for that. I also think whoever did that should be sued! I’m so very sorry! That’s terrible!

I have also been less than thrilled with doctors and physical therapists. Doctors and PTs only see my Cerebral Palsy. Not just me as me. I kind of separated the CP from myself as a way to explain movements to others that I believed to be completely beyond my control or involuntary. I think the therapists need to stop seeing Cerebral Palsy as a “problem” to some extent and instead see CP and its movements and symptoms as a difference. Our bodies are beautiful either way. I realize they don’t mean any harm by seeing it as a problem. That is how physical therapists are trained so I don’t blame them. Doctors in general are taught to see any disability as a “flaw” that they are supposed to “fix”. Diagnosis and treatment. Science itself is a system of labeling. Hence why I added the line "I'm sick of all the labels!" to my second film. Anything that is “abnormal” is not good because it is not optimal, ideal health. There is a downside to this kind of mentality. I took on this view of my walking where I would refer to the movements as bad. I didn’t truly see them as quote on quote “bad” but that was the only way I knew how to describe Cerebral Palsy to others because,other than my family, everyone described it that way.

I think in regards to disability and disease there's this weird thought that once the person becomes disabled or has a disease it somehow changes the core of who they are. This is fear. I have had conflicting thoughts on this all my life as a person with Cerebral Palsy because when I was young I didn't think about my disability hardly at all but now I think about it a lot because my writing work is usually centered around it. Is this bad? Probably not but perhaps it is a little hypocritical. One of my friends with a very obvious disability always tells me to communicate my story in relation to disability yet out of fear they will attempt to hide their own disability. After seeing how I can help people by revealing my condition and how my teacher helped me by revealing the extent of his stroke I see there is something much, much better than fear. Truth and honesty. We need to see each person no matter what for their true heart, spirit and soul. Things that can not be measured or changed by circumstance. All life and it's purpose goes way beyond my ability or anybody's ability to truly understand. All life must be respected instead of written off.

Yes, I realize seizures can be caused by many things from Cerebral Palsy to even low blood sugar. It’s why my classmate was terrified my teacher with the stroke would start having seizures in the class afterwords. She was like “What if he has a seizure? What do we do?!!!” and I thought to myself sarcastically “Great. Nice image. Now I’m going to be constantly worried he will have seizures”. Remember you even told me to turn him over on his side if he did? When he had a really bad dizzy spell right in front of me when we were alone one day in December where he looked up at the celing with his mouth half open and then his eyes shifted back and forth super fast. It looked like a sezuire or the beginning of one. I honestly didn’t know anything about what a seziure looked like so I was very afraid because I was completely alone with him and feared I might have to move him to protect him from injury. I have lifted someone of his size with Cerebral Palsy but wasn’t sure if I’d be able to help my teacher if it got worse. I was ready to call 911. Luckily he assured me it was NOT a seizure.

If your sons saw that many neurologists and they did not mention CP then they don’t have it. Cerebral Palsy is supposed to be easy for a neurologist to diagnose. My physical therapist once said something like “Some neuros are so good they can just do a few motor tests and look at the patient’s eyes to be able to tell if they have CP” I think he meant this in a playful way with this quote but I think you get my point. I agree changing his meds would be pointless. They should not be treating you this way. Sorry for ranting again! Thanks!

[funnylegs4]

Cerebral Palsy Awareness Day is March 25.