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.



World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

Life Without An Off Switch

There are a lot of analogies that can apply to what it’s like to live with Cerebral Palsy.

For a long time my muscles were like a phone dialing the wrong number.

Then I started telling people I was still working with dial up while they had Wi-Fi (thanks to John W. Quinn for that inspiration).

More recently I’ve referred to my muscles, or more accurately my nervous system, as not having an off switch.

All of these analogies can apply to my experience, and I tend to use them interchangeably. However, there are probably a few more that would apply too.

The only time all of my muscles are ever fully relaxed is during surgery, and possibly when I’m asleep but that’s a stretch.

There’s a sense of pride that comes along with being able to say that you’re “firing on all cylinders,” but there’s a downside to it that doesn’t get talked about as much as it should.

Always being “on” means it’s hard to get adequate rest, making you prone to injury (even weird ones) and making it harder to recover from injury.

There’s also the matter of fuel aka food.

If you use more energy you use more fuel to get that energy.


I often joke with my teammates that although I don’t always swim the same distance they do I’m actually working at least twice as hard as they do, except I’m not always joking.

Asking my body to sprint is like asking a car to go from 0 to 60 with the parking brake on. I start off OK but I’m quickly left in the dust. Honestly if I can see the feet of someone in front of me than that’s a success, at least for me.

Is it frustrating? Sure. But I’ve made such a dramatic change in my training that I wouldn’t have even considered swimming with these people a year ago.

I’ve made so many changes in my life in the last year that being able to be within striking distance of someone else’s feet is really an accomplishment, if you’re looking at the bigger picture here.

Living without an “off switch” can be a challenge and it always seems to be a learning process but being able to put it in a context, for me that means within swimming, helps solidify it more than I ever thought possible.

What The GMFCS?

I attempted to slide something by you yesterday because I wanted to spend more blog space on it today.

or the long version
ross Motor Functional Classification System

The Global Motor Functional Classification System was developed in 1997 (or so I’ve heard) so it didn’t come into existence until I was a pre-teen. It didn’t come into my existence until adulthood. Basically what I’m saying is I didn’t give a flying monkey what any medical professional thought about how Cerebral Palsy and I were related.

Translation: I may have been the subject of the medical care but I was as checked out as a lost library book, until my mid-20s.

Medical professionals take note: Involve your patient in their care as much as possible, not just their parents or caregivers. They know more than you think. If you don’t include them, you give off the impression that you don’t care about them and if you don’t seem to care about how their care effects them than why should they?

I found out that I’m a GMFCS level 2 by opening the envelope containing my gait lab report. It wasn’t the first time I’d ever had a gait study done so this wasn’t the first report sent to my house. It was however the 1st one I ever opened and actually looked at.

I still remember looking at the first page and noting a box in the top right corner that had different categories & a number with each category. The last line of the box said “GMFCS = Level 2.”

I won’t lie I wanted to know what could I do better to make me a Level 1, because I thought of it as some competition, for some reason. I’d always been told

I knew how I ended up as a Level 2, at least numbers wise, that little box didn’t say much but it did explain how the final number was reached.

I thought over all of the questions I had answered over the years, specifically the ones I had answered the day I was in the gait lab. How did those play into how they reached the numbers? I couldn’t remember anyone taking notes or recording the questioning but something stuck out to me.

“Do you play any sports? What do you do for physical activity?”

I was in my 20s, at the time, I was worrying about paying off my loans and looking for my first real full time adult job. I was also in constant pain. I had never played sports, at least not in the way I thought I was being asked. I did a lot of physical activity, but it wasn’t what they meant by physical activity.

That’s why my “Sports & Recreation” score was so low, or that’s what I thought (and still do).

There are 5 levels of GMFCS: 1-5. The higher the level the more involved a person’s CP is the higher the GMFCS level. So a Level 2 isn’t bad, it isn’t bad at all, but it bothered me for years.

When I learned that people with CP typically move down a level when they get older I lived with a certain level of fear of hearing or reading “GMFCS = Level 3.” It made me fixate on wanting to be scored as a level 1. That way when I aged enough to move down a level I would go back to a level 2.

I lamented to anyone that would listen (and some that wouldn’t) about how unfair I thought the GMFCS scoring was. How could you ask an adult about sports and recreation and score it the same way you would a kid? The opportunities for such can be, and often are, vastly different.

This fact bothered me so much that I even asked to be tested again.

I later discovered that the GMFCS is used mainly for children, which makes me wonder why I was even tested for a GMFCS level in the 1st place. It also makes me wonder just how they know for sure that most people go down a level if they don’t usually test adults.

The Gross Motor Functional Classification System isn’t perfect. I think most people who have had to use it would agree but it does try to group people a similarly as possible. Remember CP is a disability that effects everyone who has it differently so trying to come up with as few classifications and terms to describe a vast and diverse population is just a bit of a challenge.

I didn’t intend on making this as personal as it ended up being but then again I’m not an expert on the GMFCS so I probably would’ve done a disservice if I went with my original plan.

Here’s a visual of the GMFCS. I think it’s easier to understand with visuals anyway:

Put A Label On It

Like Beyoncé, but without the beat, the music video, or the residual paychecks.

People are always anxious to label disability; either they have to label it or try to avoid it at all costs.

Even though each case of Cerebral Palsy is unique to the individual there are different types of CP and different ways it can effect a person.

For example: I have SDCP, which stands for Spastic Diplegic Cerebral Palsy.

The most common motor type of CP is Spastic but it can also be Ataxic, Dyskinetic, or a mixture of types.

Diplegia (or bilateral) means that my CP mostly effects my legs, but it can have an effect on my arms if my legs are working hard enough. It’s like the spasticity in my muscles needs somewhere to go.

-CP can also be Quadriplegic, effecting all for limbs as well as other parts of the body.
-Hemiplegic or unilateral, effecting one side of the body, the left arm & leg (or right).
-CP can also be monoplegic, effecting one limb of the body, although that’s less common (I think).

Everyone with CP, or at least most of them, is given a label, or rather level, of 1-5 on the Gross Motor Functional Classification System (or GMFCS for short), which scores gross motor skills.

I’m a GMFCS level 2.

Many people with CP have no other impairments or conditions.

I’m lucky in that I don’t have any other comorbidities, or at least any of the big ones.

But many, usually individuals with more complex cases of CP have do have other conditions, like Epilepsy, Mental Illness, Cognitive Delays, Learning Disabilities, Chronic Pain, Visual and/or Hearing Impairments.

I do have vision issues, learning disabilities, and issues with pain. However, I got pretty lucky compared to many of my peers.

There’s also something called the Functional Mobility Scale (or FMS) which different mobility related tasks are given a score of 1-6, C, or N. 1 is Uses a Wheelchair & 6 is Independent on All Surfaces; C = crawls for mobility & N = Does Not Apply.

While the FMS is used mainly for children my mobility can usually be scored as 6 = Independent on All Surfaces, 5 = Independent on Level Services (but may need additional support on uneven surfaces), or 1 = Uses a Wheelchair, depending on the situation. This may seem like an odd mix but I assure you I have my reasons for not using walking aides like a cane or crutches.

So there you go, a basic crash course on Cerebral Palsy and its most common labels (and how they apply to yours truly). I’m sure I didn’t cover everything and what I did cover I probably could’ve been more detailed.

March = Cerebral Palsy Awareness Month

For the last few years during the month of March I’ve posted something every day (Monday-Friday) related to CP awareness. I plan on continuing with this tradition, however there will be some previously published (some of it will be updated as well) material thrown in.

It’s come to my attention, thanks to new social media connections, that many people (even people who read this very blog) don’t know very much about CP. I thought I’d start off with some facts about CP so you won’t have to go searching the internet (like I’ve had to do on occasion).

If you’re into infographics more than a list of facts:


And here’s a short list of facts:
-It is estimated that 1 in 500 babies is diagnosed with CP
-Every hour a child is born with CP.
-CP is the most common childhood disability.
-No two cases of CP are exactly alike.
-Individuals with CP use 3-5 times more energy than the average person.
-CP is a lifelong disability.
-Adults have CP too; they’re the kids that grew up.
-There is no known cure or prevention for CP.

*Some info taken from