Cerebral Palsy In The Future

This topic makes me a little nervous, although the title implies some level of boldness, so let’s hope that’s the direction in which this is going to go.

Cerebral Palsy in the future, what will it look like?

Selfishly I hope it’s still around in 20, 30, 40, 50, or more years from now.

Why?

Because I don’t see the need for a cure.

Living with Cerebral Palsy isn’t a walk in the park by any means but I rarely, as in almost never, wish I didn’t have Cerebral Palsy.

I’m not saying that some cases of CP shouldn’t be prevented if there’s a direct case and effect for it, like an infection that then results in injury that results in a diagnosis of CP.

What I’m saying is I don’t think all Cerebral Palsy should be eradicated.

Cerebral Palsy is a disability not a disease that needs to be treated, unlike something like polio, for example.

I don’t see CP in itself a problem, the comorbidities that can accompany it are a different story, the problem with living with CP is more about faults in the healthcare system rather than the diagnosis itself, from my point of view.

I wish more doctors knew about Cerebral Palsy and were willing to have people with CP as their patients. I want to get the same quality of medical care as my able-bodied peers. I don’t want to keep seeing the glazed over eyes and quizzical faces when I go over my medical history, just because I have the most common motor disability in children.

I would rather curing efforts go towards something like epilepsy, which can improve the lives of many people with and without CP.

I also wish there were more studies on CP past the point of the early teen years. I wish I knew more of how my life could look like 10 or 20 years from now. All this effort goes into the pre-adult years but not what happens after. I’ve said it before, and I’ll say it again. Children with CP grow up and become adults with CP so we need to know what we may be facing in the future.

The lack of treatments for adults is another issue that’s probably too complicated to go into here and now, especially with the way things are progressing in medicine at this point in time.

Plus, eradicating something like CP feels like taking a step towards designer babies in a sense. I’m not sure why I can’t put many words to why I feel that way, but it is something I have thought about.

I hope Cerebral Palsy is still around 20, 30, 40, 50, or more years from now. The one thing I do hope for CP in the future is that we have better education and care by the healthcare system that often leaves us looking for somewhere to go or feeling like there’s no place for us.

I don’t think we need to be fixed but we do need to be treated better than we are now.

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7 Questions: A Few Years Later

A few years ago, in my 20s, I did an interview on another blog. I thought it would be a good idea to update my answers. Plus, I’m running out of topics.

Tell everyone a little bit about yourself.

I’m in my 30s. I have a master’s degree in theology. I work full time as a speaker and writer. I also contribute to medical education and improvement of medical care for people with complex and chronic health conditions. I also have a few part time positions. I live on the East Coast and still prefer to keep things low key. I have fully embraced my introversion and often don’t get out of my PJs to get work done.

Can you share a little bit about your CP, and what kind of therapy was most helpful for you growing up?

I have Spastic Diplegia. I’m a GMFCS level 2 (last time I checked). I had PT at least twice a week from roughly 1-15 years old. I can’t say how helpful was or not because I didn’t have the opportunity to try anything else. These days I swim (on my own and with a coach) and go to the gym (with a trainer) 1-3 times a week, depending on my schedule.

How has having CP affected your life, do you think?

It’s still hard to say how CP affected my life growing up but I do think it affects my life more now than it did even a few years ago. Part of it is by choice, because I make a living by talking about the fact that I have Cerebral Palsy. The other reason is that although CP doesn’t get worse it does make aging more interesting. I have more difficult days with joint pain, spasms, etc than I used to have (I think). I’m doing more to manage my CP than I had been, just to keep myself in the best shape possible.

What’s been your greatest success?

I still think I’m waiting for my biggest success but getting a post grad degree was a big success. Also being able to use my live with CP to improve the lives of others with CP means a lot to me.

And what’s been your biggest challenge?

My biggest challenge depends on the day, if I’m in a lot of pain my biggest challenge can be getting out of bed, other days it’s trying to figure out the best way to get to a speaking engagement, sometimes it’s the metal challenge of getting through a swim practice or workout. Luckily my schedule is flexible enough that I can make adjustments when needed.

What’s your biggest aspiration?

My biggest aspiration is to have a career where I can sustain myself with as little assistance as possible. I really like being involved in medical research and education from a patient prospective, so I’d like to stay involved in that in some aspect. I also may teach at some point in the future, what I’ll teach is still a work in progress, but it’ll happen.

What advice would you have for parents raising kids with CP?

They probably don’t realize they’re disabled as much as you do so treat them like a normal kid as much as possible. Don’t lower your expectations just because they have CP. Don’t take what other people, like doctors, as gospel truth. There’s a lot going on in terms of care and treatment for people with disabilities and chronic medical conditions so what you were told five years ago may not be true five years from now. Seek out multiple opinions and do what’s best for your child don’t be sold on the “in thing” to do.

So, there you go, some of my answers are different, some are mostly the same. I’ve learned a lot more about myself and about Cerebral Palsy in the last few years. Oh, to be in my 20s again, or not, sometimes being young and stupid can double edged sword.

Back To Basics

I’ve covered these next few questions before, some more than others, but I wanted to do it again because 1) I was asked and 2) it’s always good to go back to basics.

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What is Cerebral Palsy?
Cerebral Palsy is “a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.” (Hat tip to Wikipedia)

Is it something you’re born with?
Most cases of Cerebral Palsy are congenital, meaning it happens during pregnancy, labor or delivery but some can be acquired during the first few months of life.

Does it show up as you develop from a baby to toddler and so on?
There’s no one size fits all testing for it but signs of it often show up in a baby and more signs present themselves through toddlerhood. Typically, it’s diagnosed in the first two years of life, although a rare few get diagnosed as pre-teens.

Are their different forms of it/does it manifest differently person to person?
There are 4 main types of CP: Spastic (the most common), Dyskinetic, Hypotonic, and Ataxic or it can be mixed (meaning having more than one type. It can affect one limb, usually an arm (monoplegia), one side of the body (hemiplegia), one half of the body, legs or arms, (diplegia), three limbs (triplegia), or all four limbs (quadriplegia). It effects each person differently, meaning no two people with CP are affected in the same way.

Is it more prevalent in one demographic vs another?
It is more common in twins (triplets, etc.) than singletons. It is also more common in Blacks than Whites and Hispanics, according to the CDC. It is more common in lower income areas and poorer countries as well.

Does gender play a part?
CP is more common in boys than in girls, according to the CDC.

Have there been any major scientific advances in recent years regarding diagnosis or longevity (or anything in between)?
I’m going to say it depends on who you ask to answer this question. There were plenty of treatments that were common place, 10, 20, 30 years ago that aren’t used anymore, while some are making a comeback. There is a lot of research going on now about improving medical care for people with CP as they move through the lifespan.

Is there limited life expectancy?
From CP itself, no. However, it is fairly common that people with CP have other medical conditions that could shorten one’s lifespan.

If not now, was there ever?
It’s difficult to find a clear answer to this one but I’m going to say that there probably used to be a shorter lifespan given the history of medicine and healthcare systems. Lifespans are longer than they were 20, 30, 40, years ago thanks to medical advancement for people with and without chronic medical conditions (a good example is Cystic Fibrosis) so I’m going to assume it’s the same for people with CP.

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When did Cerebral Palsy first get a name and when was it discovered?
Cerebral Palsy was first referred to as Little’s Disease in the mid-1800s. It became known as Cerebral Palsy in the late 1800s. It is believed that the first evidence of Cerebral Palsy dates back to ancient civilizations, Greeks, Romans, Egyptians, etc.

How does it affect one’s everyday life?
It depends on the person and it depends on how they measure the effects on their everyday life.

Does everyone with CP suffer massive amounts of pain?
Chronic pain is a common symptom, but not necessarily massive amounts of pain.

How does one cope with it?
It depends on the person, it’s not uncommon to manage pain with medication and physical therapy/exercise.

Are there alternative/ not traditional therapies like acupuncture, herbs, etc?
Yes. There are plenty of alternatives (most if not all) not covered by insurance. However, I cannot personally speak to their effectiveness, or lack of.

Have persons with CP used medical marijuana to aid with symptoms?
I do not know anyone personally, but I have heard of people who have CP who use it, although I’m not sure if it’s to treat effects of CP or other comorbidities (like epilepsy) that they may have.

Cerebral Palsy Awareness Month: 2019

If you follow me on social media you can probably guess what I’m going to say because I’ve been posting annoying Inst@gram Stories and tweets on Tw!tter for the past month.

Today is the start of Cerebral Palsy Awareness month.

I’ve done this before, and I want to do it again.

I’m going to write a series of posts pertaining to Cerebral Palsy, but I need your help.

What do you want to know?

What questions do you have?

What have you heard, that could be fact or fiction?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

What do you wish other people knew about Cerebral Palsy?

What would you like to share about living (and/or working) with Cerebral Palsy?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.

I’m open to feedback for the entire month, so if you can’t think of anything right now never fear there’s still 20-ish days that need material (just contact me).

The Return Of The Envelope

I was standing at the admissions desk as NRH filling out paperwork before my first ever PT session as an adult. I wasn’t freaked out about the PT. I’ve done that enough to have an odd comfort level. The paperwork was annoying, but typical, until I got to the “emergency contact” portion. That’s when I freaked out.

Who should be my emergency contact?

Typically it’s my mom, but I had second thoughts. She was 6 hours away if the traffic cooperated. If there was going to be a real emergency that required the informing of someone they should be closer than 6 hours away. I thought a pizza delivery “30 minutes of less” window would be ideal. So I put down my roommate. We barely knew each other at that point & couldn’t think of a single person who I knew would be O.K. with it, without asking first.

“When I was at NRH today I had to give an emergency contact. I listed you. If you’re not O.K. with it I can change it.”

“I’m fine with it. Just let me know where you keep your stuff. I keep an envelope of all my information right here.”

Well that was easy.

Now I just had to put together an envelope:
* Medical history
* Surgical History
* Important Phone Numbers
* Copy Of Insurance Card

I left it in my desk until I graduated. When I moved across the country I told my housemates where they could find my info, if needed, because I put down the house number as my contact (meaning there were at least 3 potential contacts).

Almost 2 months ago I went to urgent care in the worst pain of my life; because I needed another reason to put off having children, if at all. I sat in the waiting room while my mom filled out my forms trying not to gag & praying I’d blackout, since that seemed to be the only potential relief.

I was sent to the ER where I sat for the equivalent of forever, before I had to answer all their dumb questions AGAIN. I wish I had my envelope back, more than one actually.

“Can we hurry this up please?!?!?! I’m in a lot of pain here & I’m gonna barf.”

(Painfully unhelpful response I won’t repeat)

Twelve hours later I was being admitted to a medical unit because my test results were “inconclusive.” Guess what happens when you get admitted on a unit? You have to answer the same questions all over again, and this is after 24+ hours of no food, no sleep, a full day of tests, and lots of M0rphine & Z0fran. I was literally falling asleep when the attending came to do her new admission rounds, because at that point you really care what a hospitalist is/does.

The conclusion of all the “in-conclusion” was that I probably passed a kidney stone & it wasn’t my appendix. The evidence being one swollen kidney since no one was able to find the kidney stone or appendix.

My conclusion? Time to bring back the envelope.

I had a follow up with an urologist in order to attempt to put this whole thing to rest since my goal is to never repeat this experience. The first was to tell me that it does in fact look like I passed the stone & to give them more details about my time in the Big House. The second was to go through everything again with the urologist after an ultrasound.

I’m “back to normal.” No restrictions, since no one seems to be able to even guess how this all happened. It could happen again, or not. My appendix is still missing however.

*A similar version of this post was written on August 21, 2012

Revisiting: The Roll Call

Since I’ve been musing about the possible death of blogging and the importance of not overstepping boundaries when it comes to storytelling I thought it would be a good idea to revisit (and then repost) the database of Cerebral Palsy related blogs, with a few vlogs thrown in.

It’s worth noting that many of these blogs haven’t been updated in years and are written by people who have family members who have CP, both facts that bring to light my previous points. However, they all have content worth looking at if you’re interested in getting to know a few individuals that make up the CP community.

This same list will be updated and expanded on an as needed basis here.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Brielle and Me

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Dealing With My Life With CP

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Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)

Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

Not Rare, Nor Diseased

Rare Disease Day is the last day of February. Around that day a few people sent me messages wishing me a “Happy Rare Disease Day,” I appreciate the sentiment, but it’s uncalled for.

Although the media, even credible news outlets can mess it up.

Cerebral Palsy is not a disease.

It is a neuromuscular disability that effects movement, like motor skills.

It can also affect senses, like hearing and/or vision.

It is permanent, but symptoms can change.

It effects each individual that has it differently.

There are 4 main types of CP.

It can affect anywhere from 1-4 limbs.

There are treatments, but no known cure.

It is not rare.

The prevalence of CP is 1 in 323 U.S. children, and over 17,000,000 people worldwide.

It is the most common childhood disability.

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It Takes A Village

I’m pretty sure almost everyone’s heard the saying “It takes a village to raise a child,” at least once in their lifetime.

Earlier this month I had to make a phone call. This wasn’t any typical call and it was meant to be anything but social.

Ever since Botox hit it big as a medical treatment (non cosmetic) it’s been circling my head like a bird. For the past two years the Botox discussion has becoming more frequent topic of my appointments. I’ll admit I was the first one to bring up the subject when it became an option, or I thought, now that someone else has been bringing it up I’ve been doing my homework on the subject and I’m more skeptical about it than ever before. I wanted to attempt to put the Botox question to rest once and for all so I made a phone call.

I don’t usually bring up my surgical history on a simple phone call but this was one of the exceptions. I knew I wouldn’t talk to my doctor personally without it and I wanted, and needed to speak to him personally. Of course the day I call he’s in surgery all day. Why do I always call offices on surgery days? You’d think by now I’d know to make some kind of chart to keep these things straight. I hate calling on surgery days because there’s a lesser chance of getting a call back without some kind of hassle. Most of you may not find this to be true and I’m happy that you have not had to encounter this; however I have found this to be true. Just my luck I guess. So I was pretty close to shocked when I got a call back that night.

Now I have to take a minute to explain my relationship with this particular doctor and what this has to do with anything else in my life, particularly the title of this post.
I’ve known Dr. L for over 20 years, basically my entire life for those of you keeping track. I don’t see him often, but when the shit hits the fan I often consider his opinion, whether he’s called or not. He’s basically like “The Godfather” of my medical life, although I’m pretty sure he’d be uncomfortable being called that. He’s basically the person who’s had the biggest impact on my life as I know it, parents not included. So his opinion on things that everyone has varying opinions on really matter to me. Not to mention I don’t want to do something that would do more harm than good.

Once I have him on the phone I forget my entire bit and ramble a little too much. He probably didn’t mind, or even notice, but I was mentally kicking myself. So I explain the situation to the best of my ability, which at the moment wasn’t anything close to my typical level of articulation.

He didn’t tell me what I wanted to hear but he told me what I needed to hear, which is just as good. The Botox decision is purely mine. He did remind me that it is a temporary treatment. When I said I am always looking for something permanent, O.K. so I pretty much blurted it out in an effort to get a more definite answer, he said I should look for a surgeon.

So I kind of got the answer I wanted to hear….
It’s kind of nice that he considers me to be “adult enough” to make my own decisions.
(That may not be how he intended things to go but that’s how I’m choosing to take it)

With business out of the way we moved on to other things. It was mostly me, but he went along with it. I’ll spare you of all of the conversation because most of you reading this don’t know my medical history, so this could be somewhat shocking. Also, I don’t want to violate some kind of privacy boundary between him and me. If you want to know more of the story, leave me a comment and I’ll write about it at a later date.

The thing about knowing someone for most of your life, without them being considered part of your family is they still have memories of you with their own special twist. You wouldn’t think an “outsider” would have one such memory never mind a few.

As he was telling me a story about myself as a toddler, one that I’d never heard before I might add, I have a funny thought. “It takes a village.”

Anyone who’s ever spent any significant time around children; parents, teachers, nannies, etc, will tell you that it does take a village to raise a child, or some sort of communication and cooperation with everyone involved in the child’s development, at least. I hard to learn this first hand, I’ve sometimes called it “the hard way,” working in childcare. Whenever someone asks me what the hardest part of the job was I will, almost always, say the parents. The families I served were pretty amazing, but it wasn’t always easy building a relationship with them. It’s like friendships; some are easier to build than others.

I’ve always known that Dr. L played an important role in my life. I just didn’t realize how much until I talked to him again and he just happened to share something more personal, it really was a cute story and it would be just as cute even if it wasn’t about me. He’s part of the “village” that helped raise me and become who I am today. It’s sort of unreal to be able to admit that. A few times I’ve had the thought of what would have happened to me without him. It’s true we could’ve found someone else. But then would things turn out as well? How many people can point to one person and say they’ve probably had the biggest impact on their life? I don’t think the number is really that high, although some might disagree. I think I’m one of the true people that can point to one person and say that without them things would not be the same.

Realizing this connection gives me hope that I’ve had some kind of impact on the “My Kids.” I know I did, but it’s mostly due to the feedback I got from coworkers and parents. I wonder if they’ll remember me when they get to be my age, and I doubt I’m alone in this situation.

It’s really true what they say, you never know what kind of impact you’re going to leave on someone, especially a kid. It really is an amazing thing.

I’m so proud to be part of hundreds of “villages.” I hope I served them well.

*A similar version of this post was written on October 31, 2008

If It’s Broke, Fix It

Of all the things that people get wrong about CP the one that bothers me the most is that it’s a kids condition. When CP kids grow up they become CP adults. There is no magic pill. We don’t fall into a pit, so people can forget about us.

We just grow up, one of the many things we have in common with our non-special counterparts.

The thing is medicine has not exactly grown with us. Things are moving along. Change should be coming, but I wish it was here now. I wonder what it would look like. I know what I’d want it to look like, so I’d like to think some of my thoughts will make it to the future of medical care.

For the most part I still see specialists with “pediatric” in their specialty. Some are for convenience. Others, because no one else will see me, or I can tell they don’t know what they’re doing. Who wants to see someone who doesn’t know what they’re doing? So my medical needs are met by what I can find & who is willing to help.

Luckily, I have a pretty great team around me. If things come up short, which they often do, we can make something work out. It helps that almost everyone is always up for a challenge, because there have been more than a few in the last few years.

Make no mistake there is more in common between individuals with CP and those without than one would think. But when you get down to the details it would be nice to be treated more individually, yet as a group, than we are now.

Part of the problem does lie with the patients themselves. By the age of 14 or so medical professions begin to back off & having been under their care of so long it’s only natural to want to rebel a little, or a lot. I’ve wondered that if we were better at caring for ourselves would we already have the needed changes.

Doctors are as much at fault as their patients. Most don’t know what to do. I can out on one hand the number of medical professions who even know of an adult with CP (outside of orthopedic & neurology specialties). There were times in the past when I did honestly wonder if I’d ever know of another adult with CP, never mind meet them.

Even the doctors who focus on CP adults admit the system has failed, at least the good ones do. They’re trying to do the best they can, but they can’t do it alone.

The system has its issues but it’s not too late to fix them.

*A similar version of this post first appeared on an old blog, as part of the Cerebral Palsy Connection, on March 1, 2012