Last week marked about 12 weeks of physical therapy since the surgery so my therapist took me through the Gross Motor Function Measure test to see how I am progressing. If you have been following this blog since the beginning you may recall that I took the same test the day before the surgery. My score went from an 86 (pre-op) to a 98 (now). Seeing this improvement in an objective measurement of my progress is encouraging but what’s important is how my life has improved as a result of the surgery and physical therapy.
Things that are awesome:
- I can run now – It’s not the most graceful running you will see and I have a lot of work to do so that I can learn to run in a controlled fashion but I can run now and that’s a big deal! No more just barely missing the subway for this guy.
- Dramatically improved balance – Before the surgery I would often trip while walking and the story always ended with me on the floor. I have plenty of bruises on my legs as reminders. I still trip sometimes while I am walking, but I am continually amazed that I now instinctively rebalance myself and resume a normal gait.
- Increased flexibility – The impact of this increased flexibility and range of motion is great. For example, In the past when I went out to a place that had bench style seating I always had to make sure to sit at the end because I could not easily lift my legs (if at all) to get over the bench. If I didn’t get that end seat and needed to get up at any point it became a whole production. This is no longer an issue. This example might seem silly but this happened enough for me to notice it as an issue.
- Less pain – I never realized how much pain the spasticity caused. As far as I knew all of the “uncomfortable” feelings I had throughout the day were normal. Apparently, the act of walking should not feel like dragging my body through a giant tub of molasses with bowling balls tethered to each leg and my joints should not feel like they need a bath in WD-40 when I get up in the morning! I never knew how easy and effortless it should feel.
Things that are not awesome but part of the process:
- Frustration – there have been days when things just do not go right in physical therapy and I get pissed off and come home and don’t want to do anything else. I know it sounds whiny but I want to be completely honest for readers that may stumble upon the blog and are considering having the surgery. Obviously, I get over it, but it happens.
- Testing Limits – more than a few times I have gone completely overboard with exercise and PT, which leads to an uncomfortable level of soreness that lasts for days. The only way to learn my limits is to keep pushing as hard as I can.
- Learning muscle control and coordination – This is a biggie and is still a work in progress. Phrases I constantly hear in PT:
- Abs tight
- Squeeze your glutes
- Activate your hamstrings
- I barely have number 1 down and I can intermittently achieve 2 and 3.
- This is hard work – physical and mental.
In just 3 months I am achieving things that I was repeatedly told would never be possible. I don’t think there are words that exist in the English language that can express how amazing it all feels.
Learning to Run: My Cerebral Palsy Journey 
Great news…and well done for all the hard work you are putting in to get to ‘where you want to be’. By the way, how will you know when you are at ‘where you want to be’? Will you still be working this hard aged 83? Have you set yourself some sort of goal or limit?
Hi Deb, interesting question. I do have some goals I would like to achieve. I have tried to learn how to swim, unsuccessfully, 3 times already. So learning to swim is on my list. Other than that, we are currently struggling with active range of motion with my hamstrings (think hamstring curl). We are making progress but it’s really slow. I would like to get to the point where I can actively do curl my legs using my hamstrings almost normally as this should translate to some great every day benefit. My PT told me how far away I am in degrees but I honestly do not remember. Other than that I still have a ways to go with balance, strength and endurance. I am flying over to St. Louis in 3 weeks for my 4 month check in. I think I will have a better idea of updated goals then after speaking to the SDR team. As for a limit, I actually think I will realize when I have hit the limit in hindsight – as long as I keep seeing improvement I plan to keep at it.
Very nice. Some of this stuff I did not even know.
Hi Frantz, I sent you a PM on FB 🙂 Kat with spastic diplegia.
I am too thrilled, this is great work!!!! Definitely give the swimming another go – 4th time is the charm. I don’t have any physical issues but I am still struggling with breathing and rolling (stupid freestyle!!!) and this is my 3rd semester!!! Needless to say when my running game gets up to yours (running is next on the list thanks to my other half), we can totally do a 5K! Hugs and love you hon!
Thanks Azuree. Yea, swimming is one of those things I have been chasing. I will NOT lose to a body of water. Hahaha
hey bro, VERY nice recap. you nailed it! So glad to hear that you are progressing and also recognizing the frustrating points…they are real and they are there. Knowing what they are and recognizing them actually helps you tremendously. Keep at it brother! Proud of you.
Thanks Todd. Yea, when PT is bad (altough that is happening less) it really annoys me to no end!
This is great news! We tend to take for granted basic motor functions in our everyday life. I remember you mentioning this in one of your previous posts, but I gave that a lot of thought after reading this one. Looking forward to hearing about your first 5k and better yet, your first half marathon.
I agree with taking things for granted. I have already started sliding down that slippery slope. One of the great things about this blog is that it forces me think about how things used to be so that I won’t easily forget. Stay tuned on the 5k. I will definitely want to do something along those lines down the road.
My 11 year old daughter Elizabeth is scheduled. for SDR June 15 2012 you and Todd Sandberg have been a great inspiration for me. Keep up the good work and please know what you mean to us parents Bless You
Hi Sandy, I am excited for your daughter as the surgery should open some new doors for her! Glad I can be helpful in anyway. One of my main goals is starting the blog was to serve as a resource for people (or their parents) who are thinking of having the procedure to get an understanding of what the process is like.
you are doing exactly that
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