I attempted to slide something by you yesterday because I wanted to spend more blog space on it today.
or the long version
Gross 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: