What Is Cerebral Palsy Anyway: A Review

Cerebral Palsy Awareness Month is drawing to a close. Tomorrow focus will shift to other topics, diseases, and getting taxes done (among other things). To be honest I can’t wait, every year I think blogging for so long on one topic I know so well will be easier than the year before. It doesn’t get easier; it just gets different.

This month didn’t go how I thought it would. But when does my life go exactly how I planned? So there wasn’t as much new content as I had planned on nor did I cover all the topics I wanted to but I had plenty of content to repost, and I have a few ideas to develop for later on.

The month may be over but that doesn’t mean Cerebral Palsy goes away until next March. It still effects people every day so the need for greater awareness should happen every day. So I’ll still be here doing my part and hoping you’ll do the same.

If you have any questions or topic suggestions, please be in touch. I try to cover a variety of topics as efficiently as possible but sometimes I don’t cover something as much as someone would like, or I miss it totally.

This Month’s Posts:

What Is Cerebral Palsy Anyway?
End The Word
Put A Label On It
What The GMFCS?
SDR: Thoughts Almost 30 Years Later
Why I: Use A Wheelchair
Wheels Of Their Own
Being Special
The Letters
From Here To There
Standing Is Stupid
Let’s Get Spiritual
It’s Not Easy Being Green
Of Malpractice & Men
Practice Makes Almost Perfect
Things That Go Jump In The Night
No Hope For A Cure
The Difference Between Want & Can
Cerebral Palsy Awareness Day
Suffering, Cerebral Palsy & The Media
Illness & Cerebral Palsy
Thoughts On Doctors

Relevant Posts From Last Year:
Cerebral Palsy Awareness Month posts for 2015
HAWMC posts for 2015

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Thoughts On Doctors

I was sitting at my computer last night fully intending to write a post when I was informed that today is National Doctor Day in recognition of the service of physicians. At first I thought, “we officially have a day for everything,” little did I know that Doctor’s Day has been around since the early 1930s.

Then I remembered a post I wrote last year called “The Doctors I Won’t Forget” and thought it would be fitting to repost and update today for two reasons, (1) doctors can actually be helpful and (2) to bring light to the fact that there’s inadequate healthcare available for people with Cerebral Palsy, especially once they reach adulthood (if not earlier).

I don’t just have one doctor I won’t forget and the same goes for their assistants and office staff. I’ve had enough horrible and incredible experiences to be able to write several books on the topics.

I remember in ’08 when I was looking for someone who could locate (never mind treat) the source of my chronic pain. I went to one doctor who sent me to another. I loved them both and would have stayed under their care if I had more of a support system in place at the time.

Knowing I needed a stronger support system I set out to find new doctors like the ones who opened the door and showed me how badly I needed help, even if it wasn’t going to be coming from them (no matter how much I wanted them to).

I hit the ground running (figuratively) and had my 1st second opinion less than 24 hours after moving across the country. I should’ve taken my lost luggage as a sign that things wouldn’t go well, but this guy came so highly recommended (and I was too jet-lagged as well as ill) I didn’t even bother with second thoughts.

I should’ve had second thoughts. I should have run screaming out of the office when I was asked (more like forced) to pick the one part of my body that hurt that hurt the most by the radiology technician (because every joint below my belly button wasn’t a good enough answer).

He wasn’t the guy for me. I went home crushed and waited for my formerly lost luggage to arrive from Alabama, while wondering what the hell I was going to do now.

I went to another doctor that someone had heard about. He was great and I would’ve given him the green light but I was “too old” for him, as in “I’d really love to help you, but you’re just too old for me. I don’t see anyone over 15.”

I was 24.

I sat in his office for hours and everyone, except me knew this wasn’t going to go anywhere. I get that private practice is a business just like any other but you’d think someone would’ve said that there was no point even making an appointment.

But because I did like him, and I respected his opinion (because of his background) I asked if he knew of anyone that might be a good fit for what I needed. He told me to go see one of the top doctors in the state. I thanked him for his time (although I wondered if it was really a waste for both of us) and left.

I didn’t go see the doctor he recommended, because I had already seen him. I knew him well. I knew he wasn’t for me.

So I turned to the internet. Surely there had to one person on the entire planet willing to treat a young adult with Cerebral Palsy. They just had to be found, and I was going to do it.

I made more phone calls and a few more appointments. So many that I thought about seeing if there was a world record for the most 2nd opinions and if I was even close to that number (because everyone needs goals, no matter how strange some are).

Then I found a doctor who found one for me, because he was thousands of miles away (but at that point distance didn’t matter) and he knew of someone closer. I took the information to make an appointment but also laid the groundwork to potentially see the guy I found thanks to the World Wide Web, just in case.

I made an appointment not expecting anything to come from it. Why would I after all the appointments I had sat through and how they all ended?

I went thought the appointment, just like I had all the others. It was different but I knew not to get my hopes up. Then he left to review some things and came back to talk to me.

He wasn’t the right person for me either. But he did something every doctor before him didn’t do.

He told me what he saw and then admitted that he could do the job but he knew someone who could do a better job. He’d already called him and he’d agreed to see me.

And the rest, as they say, is history.

I learned a lot from that process but the most important thing I learned is that you don’t get to choose to be a professional patient but if you’re going to be one you have to develop a tough skin because you’re going to carry a few disappointments with you and those are going to affect how you interact with any other medical professional forever. No, I am not being dramatic, at all.

I can’t forget those doctors and I won’t let myself either. As horrible of a journey it was to get quality care they each had a part in shaping the person, and advocate, I am today. Although I won’t go so far as to thank them for it.

What doctors need to realize is that even though someone might be “just another patient” to them they’re not “just another doctor” to that patient, especially when you have a chronic condition with chronic misconceptions.

And that’s just one experience with one specialist.

I’ve been searching for a general practitioner, to no avail, and it’s not like my CP is so complex that I need a lot out of someone who can cover the basics.

The problem is there aren’t a lot of doctors out there who know about CP outside of certain specialties, and the problem is just compounded by adulthood. It’s not uncommon to disclose your full medical history and then be told that you can’t be seen by this particular doctor or see a doctor and just know things aren’t going to be a good fit.

To all the doctors (and aspiring doctors) out there thank you for answering the call to serve, or whatever called you to medicine. Please step out of the box and educate yourselves on the most common disabilities out there, even if they are covered in medical school. What you’ve been taught (or are going to be taught) isn’t enough. Even if you don’t know anything about Cerebral Palsy, or any other disability, that’s OK, ask questions, be willing to work with a patient rather than sending them out the door and wishing them the best.

*A similar version of this post first appeared on an old blog on March 18, 2015

Illness & Cerebral Palsy

Contrary to popular belief many people with Cerebral Palsy do live healthy lives. However, we are not immune to the everyday illnesses that effect everyone else. When we do get sick it can be a challenge, as I was reminded thanks to Tw!tter.

 

I can’t speak for everyone but what floors me about getting sick and having Cerebral Palsy is managing all the symptoms of both.

Spasticity needs to be kept in check and do the ill effects of a cold.

The medications to manage both are not compatible, at least not in my case.

So what are you to do?

I have to choose the bigger battle hoping that it won’t turn into a full-blown war.

Sleep is the biggest help for me when it comes to getting over a cold. However, it’s hard to sleep with spastic muscles on any given day.

Also illness or pain (and a host of other things) can make spasticity worse. Again, quite the conundrum.

Usually I opt for the medications to rid myself of whatever temporally illness has taken hold of my body, because I have a history of colds turning into something bigger and harder to get rid of, if I don’t nip it in the butt ASAP.

I then try and hunker down as much as possible keeping outings to a minimum, and ride things out.

It takes roughly 7-10 days for a cold to run its course. It takes just as long for my spasticity to get back to its “normal” level.

So you can say it takes two to two and a half weeks to get over a cold and its aftermath.

Having a cold can suck for anybody. Having a cold and CP can knock you on your ass, sometimes literally if a sneeze and a spasm occur at the same time or within close proximity to each other.

Suffering, Cerebral Palsy & The Media

There’s a common, and undying, misconception that everyone with a disability suffers daily and suffers greatly. I don’t know when or how it started but I wish it wouldn’t be such a big focal point. I even took a class on the Catholic understanding of suffering in an effort to understand something about why suffering is such a focus for people.

And I have to tell you I just don’t get it, from the point of the sufferer or the observer of suffering, and I’ve been firmly planted on both sides, sometimes simultaneously.

One of the biggest things that annoys people in the CP community is that almost all press we receive starts with “suffers from Cerebral Palsy” or “has overcome Cerebral Palsy.” Now I can’t speak for everyone, although I’m not the first person to say this, but I do not suffer from Cerebral Palsy.

Yes, there are days when I am in constant pain, but I cannot call that suffering. Pain can be a cause of suffering but I wouldn’t go as far as to say this is the case here.

I’ve heard it said, I’ve also read it and said it, that “A disability doesn’t make someone feel disabled, the fact that no one thought to build a ramp does.”

Just what does that mean exactly?

Simply, or maybe not so, disability often it is not the disability itself that causes suffering. It’s other people’s perception of disability that creates the suffering.

I suffer (and so does the rest of the CP community) when people portray us as suffering. It’s not true for one thing and the fact that it’s not true just feeds into the misconceptions the able-bodied community has of the disability community.

Then there’s the idea that we can overcome Cerebral Palsy. No, Cerebral Palsy is part of who we are. You can’t overcome part of who you are, just like you can’t overcome having a certain hair or eye color. You can cover it up but it’s still there underneath.

The other thing is I don’t want to overcome who I am. Wanting to overcome who I am leads people to think that there’s something wrong with who I am and there isn’t. Granted that’s just my opinion.

I know I complain a lot about Cerebral Palsy not getting enough press so you would think I’d be happy to take what I can get.

But I’d rather the media get their facts straight before putting individuals with Cerebral Palsy into the spotlight.

We get so little attention that when we do it can be frustrating when what’s deemed as “facts” aren’t. We’re getting the attention but it’s not in the best way. Because contrary to what so many people seem to think now not all press is good press.

What I’d like to see is for more articles, videos, news stories, etc. telling the real story of those living with Cerebral Palsy. We’re just like normal able-bodied people achieving our goals and dreams, not suffering, not overcoming in spite of our disability.

Cerebral Palsy Awareness Day

I’ve made no secret that I’m not the biggest fan of awareness days, yet I feel obligated to participate in them. Today is National Cerebral Palsy Awareness Day in the US, not to be confused with World CP Day which occurs during the fall.

A few days ago I read that there was (finally) a senate resolution officially designating today as National Cerebral Palsy Awareness Day.

I’m not one to keep up the daily goings on of the senate, or any other governing body, so I don’t usually read official documents, but I read the resolution to see what it entails.

S.Res. 400 is a bit of a disappointment, unless I’m misunderstanding the purpose of senate resolutions, and if that’s the case someone please feel free to explain it to me.

All it says is what we already know, or information that can readily be found during a basic internet search.

I was hoping for something more, even just a little bit more.

I know the government is deeply divided but if this has become standard operating procedure in order to get our elected officials to agree to known facts than maybe we need to reexamine how things are run and who we are electing to run things.

So the government needs to agree that a condition that’s been around for 100s of years before agreeing that it needs recognition. Does this not sit well with anyone else, or is it just me?

We have a resolution that says today is National Cerebral Palsy Awareness Day. But what does that really mean? More importantly, what comes next?

march-25th-is-like-and-share-cerebral-palsy-awareness-day

The Difference Between Want & Can

I can’t remember when I learned the difference between “want” and “can” but I’m pretty sure I knew the difference before I learned how to spell them or how to use them correctly in a sentence.

I haven’t mastered the discernment between the two but most of the time the choice is made for me (and I have scars and many more childhood memories to prove it). I use what I’ve learned in future decision making, and that usually means I become more cautious. Sometimes this system serves me well, other times, not so much.

I took up swimming again as a way to possibly heal my hip and get some additional exercise while doing something I truly loved, what it’s evolved into is so much more. I’ve not only gotten some hard physical healing but also mental challenges I wasn’t expecting. I still find swimming relaxing but not in the typical way people think when they think of the word “relax.”

One of the benefits of swimming with a coach is discovering new boundaries for “want to” and “can do,” and it doesn’t always come from your coach.

Whenever I’ve been asked what I want to swim I always say something I’ve wanted to do for as long as I’ve wanted to be a competitive swimmer and I usually end with “You asked what I wanted to do, not what I thought I could do, because those are two completely different things.”

I can’t be the 1st human on the planet to voice such a sentiment and I’m certainly not the 1st one to ever feel this way.

One of the best, albeit weirdest, gifts Cerebral Palsy gives a person is the knowledge that “want” and “can” aren’t words that can be used interchangeably without a certain level of determination and hard work. There are times when you do get lucky but it’s not often.

We want to do things but sometimes our muscles, thanks to our brains, won’t let us. The difference between “want” and “can” is easier to figure out, but make no mistake that doesn’t make it easier to accept.

Plus, the divide between the worlds of “want” and “can” are often further apart for people with neuro-muscular conditions, which CP is.

Sometimes changing your “want” to be more in line with the “can” is in order, other times it takes a lot of work because changing the “want” just isn’t possible. And again, sometimes you just get lucky, which usually comes after a lot of hard work.

I’ll give you a few practical examples:

Zachary knew he couldn’t be a professional baseball player but that didn’t mean he couldn’t write about sports.

John wanted to join the Navy but couldn’t after he failed the physical so he went home and practiced until he could pass the physical.

I want to swim a 200m IM (because a 400m IM is just too insane, even for me) but I can’t without putting in some serious training time first.

I’ve learned to appreciate the differences between “want” and “can.” I don’t always like how big of a difference there is between the two but that often brings up a question which needs to be answered:

How bad do you want it?

No Hope For A Cure

I don’t hope for a cure for Cerebral Palsy. I’m not saying that there is no hope, that one can’t/won’t be found. I don’t hope for a cure because I like who I am. Chances are there will be a cure found at some point, and probably sooner than we think. And that’s O.K, I guess.

I’ve always known I have Cerebral Palsy. I didn’t find out what that in fact means, for real, until a few years ago. I’ve always been uncomfortable with the idea of being healed or cured for as long as I can remember.

It always threw me off when teachers and other parents would call me a wonderful child and then they’d turn around and suggest to my parents that they should take me to some kind of healer. If I was so wonderful than why did I need to be healed? I understand that things aren’t so black and white now, but these were not conversations to be had in front of a child.

Do you know the story in the Bible when a man goes up to Jesus to be healed and people ask him, “How has he or his parents sinned for this to happen?” (That’s the story more or less). I’m not for defacing books, but I’ve always wanted to rip that story out and act like it was never there to begin with. I get the point of the parable; it just dances on my last nerve when I hear it.

God, or whatever you believe in or not, made me this way. God doesn’t make mistakes, right? So what’s to heal or cure?

There were difficult times in my life, probably more than most people have, if you add in all the medical stuff. Do most people feel bad that I had to go through it and I’ll probably continue to? Sure. But here’s what none of those individuals will ever understand, I wouldn’t change I thing for one simple reason.

I am who I am today and will continue to be because of how I’ve lived.

As Jack Morris once said, “Our human task, if you like, is to not flee from the ill-being but to transform it.”

Here’s an idea I’ve had recently that you may have never considered. I know what my shortcomings are, well most of them, without having to think about it too much. I have a disability called Cerebral Palsy therefore my balance isn’t awesome, anything requiring that I have great balance isn’t for me. Neither is anything that requires me to be on my feet eight plus hours a day (that’s a mistake you only make once).

This self-actualization extends to what I’m good at as well. Having shortcomings gives you the ability to develop other skills that make you stand out.

Some people spend most of their lives figuring out what they’re not good at and vice versa. So in this aspect I think I have a leg up on things.

Growing up I used to wish that I was more like the other kids, at first. But once I thought about it the idea scared me. I’ve known no other life. The unknowns of what my life could be scare me more than the struggling I know I’ll endure. I wonder if I’d settle for less if things came easier, something tells me I would have.

The only regret I do have, if I have to name one is not realizing I had a learning disability until I was almost a college graduate. I wish I had known it sooner so I could’ve learned coping skills for it earlier on. I can’t really attribute it to having Cerebral Palsy; although it is true that learning disabilities are more common in people with CP it’s not a hard and fast rule.

I don’t hope for a cure because I don’t need to be cured. I am who I am and that’s who I’m meant to be. It makes no sense to hope for something you don’t want. I have other dreams to hope for so I’ll stick to those.

*A similar version of this post first appeared on an old blog on March 27, 2013

Things That Go Jump In The Night

I’ve written before about this lovely thing that some people with Cerebral Palsy struggle with called a startle reflex (or technically called a moro reflex). While I can’t provide any tried and true tips or tricks for keeping startling at bay I can tell you what makes mine go nuts.

You know those food service pager things that light up and buzz when your table is available or your food is ready to be picked up?

They may look something like this:

restaurant-pagers-sydney

If I’m out with someone else I’ll insist that they put it in their lap, on top of a jacket, or on the seat next to them.

Because those little buggers put my nervous system into overdrive, and it can take days, yes days, to recover from it.

If I’m out by myself, I usually put it next to me on the chair I’m sitting in or under my leg. It sounds counterintuitive to put it under my leg but this is one of those instances when having diminished sensation really does help. They vibrate hard enough that I can feel it (unlike a cell phone) but it’s not jumping around on a table, which then makes me all jumpy.

I also try and avoid establishments that use those types of pagers but it’s a trickier thing to do than one would think.

People, friends and family included, will often make fun of me for my little quirks and things I obsess over but few people understand that it’s the “little” things in life that make living with Cerebral Palsy more difficult, and sometimes just flat out miserable, not the “bigger” things.

The ADA takes care of a lot of the “bigger” things and what it doesn’t we’ve usually learned to compensate. It’s the “little” things that catch you by surprise.

So next time you’re with someone with CP and they ask you to do them a favor please do it (without the wisecracks, comments, or questions). You’ll make the day more pleasant for them, and probably yourself too.

Practice Makes Almost Perfect

I was sitting on the side of the deep end of the pool looking at the bottom. The last time I attempted any sort of dive was at least 10 years and 2 surgeries ago. I knew it wasn’t impossible I just couldn’t picture it, but here I was about to attempt it.

“The worst that can happen is that you fall in the pool.”

That is the worst thing that could happen, God willing. I spent a few summers at camp practicing water safety so I know what to do to if I fall into a pool and do my best to protect myself from serious injury. Plus, I was sitting next to a woman who had worked at the same camp so although we don’t remember each other from back then we can find some common ground when needed.

We figured out the mechanics the best way we could without actually doing it. I made the remark that it’s been so long since I’ve done anything like this that I really wasn’t sure it could happen, physically. She agreed that I was different physically since so much time had passed, but said nothing about the tight muscles, metal plates, screws, etc.

“I have to worry about normal people stuff too!?!” came flying out of my mouth, and I meant every word. I joined this swim club to have more disability/ability focus so I wasn’t thinking normal body mechanics (thanks to puberty) would come into play.

One of the most common challenges for people with Cerebral Palsy is motor planning, something I’ve alluded to a few times already, so executing multiple moves in the span of a second, or in this case less, isn’t something that comes easily (and on the rare occasion when it does you hang onto “your way” as hard as you can).

There are a variety of ways one can execute a dive in the world of Para-swimming. The trick is finding what works for you.

I knew a standing dive was out of the question, between my spasticity and startle reflex there would be little chance for consistent conditions to get the most out of practice.

I knew what kind of dive I wanted to do. It seemed like the best of the possible “happy mediums” to be able to maintain correct posture and come off the wall as quickly as possible without expending a lot of energy, but that was out of the question too (thanks to high riding patellas).

That left me sitting on the side of the pool trying to find my “sweet spot” the place where I would have the best balance and having the longest dive possible. And if that meant falling into the pool a few times that’s what I would have to do.

It wasn’t the worst time of my life but I can’t say it was all that pleasant either. I was able to figure out what works, what doesn’t, and what I need to fine tune.

A few days later I was at the gym and explaining the mechanics of diving to my PT, which basically comes down to three-ish parts.

“That’s a lot to do in a split second.”

No kidding.

Now I’m not saying learning something new isn’t impossible but it can be tricky when motor planning is pretty much the exact opposite of your forte. It’s important to practice, obviously. But it’s also helpful to practice with someone who knows what they’re doing better than you do, if possible, so they can provide the needed feedback, in my humble opinion.

I know how things are supposed to look but I don’t know how things are supposed to feel in order to achieve that look, my brain just can’t compute. In all honesty I can’t imagine how normal brains are capable of processing something like a dive with less difficulty, maybe some aren’t, I have no idea.

That’s where the need for practice comes into the picture.

I was once told, “Doing something once is easy, repeating it is the hard part.”

Once I’ve gained a skill, of any sort, I have to practice it in the most ideal conditions in order for it to stick. Then I need to practice it in slightly different conditions to plan for the unexpected, as much as possible.

I can’t speak for everyone but it’s mentally and physically tiring, and usually my mental stamina gives out first because it can be just so boring. I’m not even going to get into the frustration of seeing someone achieve the same goal and knowing you’re going to have to work at least twice as hard, but I will say that this is where having smaller goals towards bigger goals helps.

I’m sure you’ve heard the saying “practice makes perfect,” and it’s true. However, when you have Cerebral Palsy you might have to redefine what makes perfect “perfect.” People with CP are wired differently than our able-bodied counterparts, and I mean that pretty literally. The whole world is running on Wi-Fi and we’re still trying to function with dial up, and when that doesn’t work, fax machines.

Of Malpractice & Men

The fact that I have Cerebral Palsy doesn’t come up often, if at all, around family and friends. So I wasn’t expecting to hear someone ask my mother if she ever considered suing the doctor or the hospital after my diagnosis.

I can honestly tell you I had no idea what the answer would be because I’ve never asked, I’ve never heard anyone ask before this, nor had either of my parents volunteered this information in any manner.

When I first “outed” myself as a someone with Cerebral Palsy on a blog something happened, I started to get ad inquires. I had been a blogger for years at that point so you’d think at least one before divulging such information, but it wasn’t so.

Once I became a “blogger with Cerebral Palsy” I was getting offers fairly frequently. It was something I hoped would happen in my blogging career but once it started happening it wasn’t what I thought (doesn’t it always go that way).

All of the offers I was getting were from lawyers specializing in medical malpractice, especially for parents of children diagnosed with Cerebral Palsy. I had to make the conscious decision right then, although it wasn’t very hard, of what kind of blogger I was going to be now that I’ve told people more about myself.

I think it’s pretty clear that although I can be fairly honest about life with Cerebral Palsy I didn’t want to focus on who was at fault (whether it be human or divine) for my having CP; having ads for malpractice would contradict that.

Now I’m not saying that there aren’t instances where the actions of others don’t contribute to someone’s disability, and when that is the case justice should be served.

But in my case I can’t (or maybe don’t is a better word) blame anyone for my CP, except maybe myself for not having the best timing.

So when one of my parents was asked if they ever considered suing I was surprised enough that the question came up. And honestly I wasn’t sure if I wanted to know the answer.

I’m not going to divulge the answer here because it’s not that important, but let’s just say I’m far from living off of any trust of any sort.

One of the things I wanted to address but couldn’t find the right words, until now, was the idea that someone is always at fault for the cause of someone else’s Cerebral Palsy and the pressure to go after those responsible.

I don’t blame people for it, well maybe I blame the frequency of malpractice commercials and that malpractice sites are one of the first things that pops up when you search “Cerebral Palsy” on the internet.

I wish people could see what living with CP is really like before getting barraged by people who want you to focus on pain and suffering, just so they can make money off of it. Yes, they may want to help you but bottom line, you’re paying them so there is an additional motive for them.

While I don’t blame people for it, what I want people to know is that you don’t have to buy into the blame game if you don’t feel the need to, or more importantly if you don’t want to. There’s so much more to living with Cerebral Palsy than looking for someone to blame for it.

It’s a waste of time and energy, in my humble opinion.

Living with Cerebral Palsy shouldn’t be overshadowed by blame, shame, or guilt. So don’t allow society to pressure you into feeling any of that stuff. There are more important things to focus on, like living a full and happy life.