As part of the Candor CP team, I am very excited to see people download our app and give it a whirl!
We have already seen people use the Candor app to encourage some great interactions, advice, thoughts and support. It strengthens our conviction that our app can be a great service to the CP community.
Of course, the more people that join, the better the experience for everyone. Tell anyone you think will benefit to download the app and join the conversation! Follow us on Twitter and like us on Facebook so that you can stay up to date. Spread the word!
We are working on some cool updates and look forward to sharing with you all soon to make the experience even better!
Download the app! https://itunes.apple.com/us/app/candor-cp/id889659031?mt=8
Announcing Candor CP
One of the frustrations I have dealt with because I have Cerebral Palsy is that it is often difficult to find other people like me, who have CP, to talk to. The growth of the internet has been very helpful in addressing that issue. Facebook Groups, online forums, and the web have been invaluable resources. However, I still struggle with using these resources as they often associate my posts with who I am and there is not a way to delete a post once I put it out there. I would bet that anyone with a health issue can empathize with the desire to communicate with others anonymously about some of the more private or potentially embarrassing aspects of their disease.
For example, I recently posted a question I had about my orthotics in one of the Facebook CP groups I am a member of. The question was not really that embarrassing. However, I posted it under the assumption that it would only be visible to other members of the group. Imagine my surprise a few weeks later when I was having dinner with a family member and she asked if I was able to resolve the issue. Apparently, the post was visible to anyone who was friends with me on Facebook! Had I known that, I would not have posted my question.
Today, I am launching a project I have been working on with a couple of people – Candor CP. Candor CP is an app that let’s you chat anonymously with other people who have CP. Getting setup to use the app is simple: create an account using an email address and create a password. THAT’S IT. No usernames, photos, personal information, share settings, or linking to other social media sites. As you post and comment, the app dynamically assigns you an avatar that is unique to each thread.
I am ecstatic to get Candor CP out in the wild and hope everyone finds it useful. I am also looking for feedback from all of you on how we can improve the app and make it better. Feel free to email the Candor team at firstname.lastname@example.org, follow us on Twitter, and like us on Facebook.
A special thanks to those readers of the blog who assisted with testing.
Don’t forget to download the app and join the conversation!
Yesterday, a group of friends and I did The Spartan Sprint at The Tuxedo Ridge Ski Center in NY. I decided to do this race as a challenge to see how far I have come since the surgery. I trained for it like a maniac in the months preceding the race. Despite all the training a quarter of the way through I was already saying “this is the hardest thing I have ever done in my life.” Not quite an exact quote but I want to keep this blog family friendly ;).
A few details about the course:
- The course was 4 “hilly miles.”
- There were 25 obstacles spread through the course.
- It rained pretty heavily the day before so the entire course was very muddy and slippery.
- For every obstacle a racer did not complete there was a 30 burpee penalty.
I am going to focus on the obstacles that I think highlight the new abilities I have as a result of the surgery.
The Hills – the whole course was going up and down steep hills. It was more like a hike than a run. Hiking up the trails required a lot weight shifting and balancing on one leg. The fact that the earth was drenched in mud made it pretty tough and I slipped and fell quite a few times.
Hurdles – I had to traverse hurdles (going uphill) that were about 1.5 feet high. I used my hands to hop over the first hurdle and was scolded by one the monitors. Rather than risk doing 30 burpees I decided to try the next few hands free. Shockingly, I was able to get over the hurdles by stepping over one leg at a time. If you’ve been reading since the beginning you will remember how I struggled to step over cones in PT and when I hit the milestone of stepping over 12 inch cones. Before the surgery I struggled to step over 3 inch cones.
Tire Trudge – I had to walk through a field of tires with nothing to hold on to. It was much easier than I expected it to be. As with the hurdles this would not have been possible pre op. I couldn’t lift my legs high enough and my balance on one leg was much worse.
Sandbag Carry – I was supposed to carry a sandbag that was not really that heavy up a steep, muddy hill. I fell 3x right at the beginning and decided to skip it. The earth was just too slippery for me. Hellooooooooooooo burpees!
Vertical Cargo Net – this one was a mixed bag. I got very close to the top of the cargo net but then I got stuck because I could not raise my right leg enough to make the next rung in the net. My hip flexion on the right side is still a work in progress. Luckily, my teammates were there to help me and push my right leg up. Boom! Once that happened I was able to get over the net down the other side.
Fire Jump – I didn’t bother trying this one. Normally, I prefer to at least try an obstacle but the chance of landing in pile of burning coals didn’t seem worth the risk.
Tractor Drag – I had a to drag a heavy cement block up a hill and then back down. This one wasn’t too bad to complete at all and was all powered by my legs.
The rest of the obstacles were difficult but not as challenging as the obstacles mentioned above. My favorite obstacle was the Monkey Bars and my least favorite was the Barb Wire Crawl.
My only goal was to finish. I failed 3.5 obstacles (Traverse Wall, Spear Throw, Fire Pit, and Rope Climb) and paid the burpee price; but I made it to end! As I sit here 24 hours later writing this post my body feels pretty good which is amazing considering what I just put it through. I have a lot of soreness in my right glute muscles but other than that I feel great.
I hope reading this post gives other people considering the surgery a good idea of what might be possible. I was feeling pretty good about myself at the end of the race.
You can check out some photos my friends captured here.
Special thanks to Anna, Jarrett, Paul, Peter, Vasant, and Mitchell – it was definitely a team effort.
One year ago today I underwent the SDR procedure at Barnes Jewish in St. Louis. I still remember most of the day as if it were yesterday. From getting the first dose of medication to “relax” before the operation to waking up after the procedure as I was getting moved to the ICU. The impact of the surgery did not really hit me until 3 days post op when I had to stand up for the first time since the surgery. After trying, and failing to stand up the first time — moments later I was able to stand up and I felt 2 foreign objects that felt like overcooked pasta where my “al dente” legs used to be. That is when it dawned on me that everything was likely to be different going forward.
Since then I have experienced the success and frustrations of intense physical therapy and done things that I never thought I would be capable of doing. After more than 10 years of constantly searching for a treatment and seeing countless doctors who advised me to:
- “Get over it.”
- “Be happy you can walk.”
- “There is nothing more you can do.”
I finally found a treatment that has made a substantial difference in my life.
I still feel as though I have more work to do in terms of strengthening my lower body and overcoming some challenges. But I really look forward to finding out what my body is capable of!
Surprisingly, it’s been about 10 months now since I had the surgery. I know it has been some time since the last update; but I reached the point in the process where the improvements I see are more subtle and coming at a slower pace. Now, I focus on continuing to work hard at therapy, stretching, gaining more strength, and muscle control.
One thing I have noticed as time has passed is that I now find that I will do something without thinking about it and then realize in hindsight that I just did something that would not have been possible before. For example, a few weeks ago I moved down a flight of stairs in the subway fairly quickly and without holding on to the handrail at all. It wasn’t until a few minutes later that I realized what just happened. It’s very cool that I have reached the point where I am subconsciously using new abilities without thinking.
Similarly 3 friends have independently told me that my speed when walking has improved dramatically and they no longer have to slow down as much as they used to when walking with me. I never really focus on walking faster – it just started happening. The lesson I should, but probably won’t, take from this is to stop obsessing about every single detail of my gait and movement and just let the improvements come.
In October, I had a gait analysis done for the third time in my life. The cool thing is that I had each done at the same facility so the report had the data from all 3 instances (2002, 2010, and 2012) so we can see how my gait was changing over the years and the effects of the SDR operation. It also helped us to zero in on areas to focus on going forward in therapy. Finally, it’s nice to see a quantification of the changes in my gait to back up anecdotal observations.
Here is a small chart I created with some data from gait analyses:
What immediately jumps out to me is the decrease is my walking speed and stride length between 2002 and 2010. The differences were not huge by any means but the downward trend was not a good. This validates the feeling I had that my condition was getting worse over time. The other highlight is the increase in my walking speed from 2010 to October of this year, which is pretty significant, and is in line with the observations I mentioned above.
I am still working quite a bit on physical therapy and I am a bit surprised at how long it is taking to increase the strength in certain muscles like my glutes and hamstrings. It feels like I have to work 3x as hard on these muscles to realize any improvement. Because of this I have been working hard to avoid the trap of getting lax with the exercise and stretching since the ‘rewards’ are not as immediately apparent as they were before.
Now that more time has passed since the surgery it’s easier for me to look back and think about how my quality of life has increased:
- Less pain as I go about my day – Awesome
- The lifespan of my footwear has increased at least 5x – My wallet loves this
- I am generally more physically able – I cannot overstate how awesome this one is!
- Stretching and exercise leads to actual results instead of feeling like a waste of time
Stopping to think about all these great changes from time is a great way to remind myself of how glad I am I had this done and how it will pay dividends for the rest of my life.
So this happened in PT last week:
The cone in the video is 12 inches high. In the past I struggled (read: knocked them down like Godzilla on a rampage) with 3 inch cones. This is a HUGE triumph for me as I have struggled with this movement for months. It has taken months to get here but the increased strength and balance is worth it!
Since launching this blog I have been fielding questions about my experience and the SDR process from people who are thinking of having the surgery. Below you will find a collection of the questions I have been asked and my responses.
What has improved the most? The biggest improvement has been the increase in fluidity and range of motion with the reduction of my spasticity. My legs are generally much less stiff and my movements are easier and more fluid. You can see the difference in the before and after videos on the website. I can run now (I still hope to improve my running skills) and that wasn’t happening before the surgery.
What hasn’t improved that you hoped would? I would say right now I am struggling with range of motion in my hamstrings/active knee flexion and that is pretty frustrating. We are still working on this and I am hopeful that it will get better.
What new achievement are you most excited about? I would say the increases in strength and stability I have seen in areas I could not strengthen before I had the surgery. My core strength has increased quite a bit since the surgery and that has helped me in some amazing ways. I am more stable on my feet and am able to recover from a misstep or stumble without falling. One of the great benefits of this is that I no longer feel as uncomfortable as I used to in crowded areas because I navigate through a crowd in ways I never dreamed of before the surgery. For someone who lives in NYC and takes the subway daily; that’s a pretty big win!
What was the biggest struggle in the recovery? I don’t think I have a single biggest struggle. The only thing I really have to emphasize that is a struggle is that the rehab takes a HUGE commitment and is hard work – mentally, physically, and emotionally. It’s also pretty humbling. Things do not always go too well and I find that I struggle with things that look as though they should be very easy to do.
Any regrets or things you wish you had done differently? I can honestly say I do not have a single regret. The only regret I have is that I did not learn about this procedure or have one of the many doctors that treated me tell about this procedure earlier. As with many people who have CP, I have had several surgeries; some of which could have been avoided if I had the SDR earlier in life.
Did any of the reported side effects stick around for you? (bladder issues, leg and foot sensitivity, etc.) I feel lucky in that I do not seem to have any side effects 5 months post op. Occasionally I have an odd sensation in my legs but it’s temporary and goes away. Recently, I have noticed that as I am doing new things I feel extra soreness and weird sensations but they do not hamper me from doing anything.
Post-op pain is a given, but if you have any tips on how to prepare or deal with it? I did not find the pain to be too unbearable post-op. A few weeks before I had the surgery Dr. Park changed the post-op pain protocol to use an epidural and that managed my pain pretty well. For me the pain level was low enough that I was asking for my phone as soon as I woke up after the operation! Obviously, I do not know what it will be like for others but in my experience it was manageable.
How did you handle the plane ride back home? Were you able to walk at all or at least stand at that point? The plane ride was fine. I flew back on Delta and the staff was extremely helpful. I was in a wheelchair and could stand and walk with a walker or assistance. The only thing to remember is that your legs should not dangle so have something to put under your feet on the plane.
Can you tell me about your rehab schedule immediately post-op? (How many days a week? Hours a day?) Immediately post-op I had physical therapy with a therapist 4x a week and each session was about an hour. In addition to that I did stretching and a home program every day upon waking up which took a bit of time and then I also stretch at night before bed. It is definitely time-consuming and something you need to commit to. I would say about 2-3 hours a day in the period right after post op.
How long was it before you felt confident standing, or walking short distances? Indoors? Out? I was getting around in the house with a walker once I got home from St. Louis. This was about 6 days post op. I did find that I felt tired pretty quickly and it took a couple of weeks to build up my stamina. I stayed with family for about 6 weeks or so after the surgery but I was able to start going for walks outdoors with the walker starting a couple of weeks or so post op.
How long did it take for you to return to work? Driving? Normal life? I think 6 – 8 weeks is a good approximation of when you can go back. As with the pain levels I think this varies from person to person. A return to normal life I think also depends on how your rehab goes. For me I think about 8 weeks out I felt comfortable getting around on my own without any assistance.
- What’s your rehab schedule like now? I am still doing physical therapy with a Physical therapist and in addition to that I have a home program that I follow every morning (exercises and stretching) and a night program (mostly stretching). In addition I also exercise at the gym regularly. I still have some strength building to do in a few areas.
If there is a something you would like to know about my experience so far feel free to email me or to drop me a line in the comments.
Update – There has been a great response to this post and many people have found it helpful. To make it easily accessible for new visitors to the site I have added a separate FAQ to the main navigation.
Everything is still going pretty well with physical therapy although progress is now much slower. I am still struggling with my hamstrings particularly as it relates to bending my knees. We are trying a variety of things and hopefully they will help. At this point I think the limited range of motion on my right leg is holding me back from improving my gait as I do not bend my right leg enough when walking.
Since the last update I have noticed several things that are easier. I spend a lot of time walking on the treadmill and ever since the surgery I have needed to hold on to the rails for stability. As of a couple of weeks ago I am now able to use the treadmill hands free which is a hump I have been wanting to get over a for a while. I have also noticed that my strength is increasing as well as my endurance. This has all translated to easier movements and being able to engage in exercise for longer periods of time.
Finally, my running is much improved. I feel as though I have much more control of my movements when running now and it looks and feels more fluid. It’s hard to believe that this was not possible 6 months ago! I took a short video of me running over the weekend and have included it below.
In the last update I posted a series of goals that I hope to achieve. I have not done an assessment since then so I will provide an update on how that is going once my physical therapist and I do the necessary tests.
Last week I flew to St. Louis to meet with Dr. Park and the physical therapy team for a 4 month post op checkup. Generally the team in St. Louis thinks I am doing pretty well and they provided some great feedback on new things I should be doing in physical therapy. The main thing that Dr. Park pointed out is that I need to stretch more to improve my flexibility so I have started varying the types of stretches I do and trying to do more stretching each day.
I am still working on improving my running powers. It is slowly getting better but I think it’s going to take quite a bit of work to get all my “systems” working in tandem to achieve a good running pattern. The main issue is that my right leg is notably more stiff than my left leg and my right toes sometimes catch when I run. I will address how we plan to attack this problem below.
My balance continues to improve and this week I was able to stand on my left leg for 16 seconds on my left leg and 12 seconds on my right leg, without falling over. Before the surgery I was not able to achieve 10 seconds on either leg. Of all of the improvements I have seen so far the improvement in balance definitely ranks as one of the most beneficial. The improved balance has affected so many different aspects of my mobility. I now feel much more comfortable navigating through crowded spaces; something I used to hate to do before. I never felt quite safe in crowded area and the slightest bump could lead to me falling over. I still have work to do in this space but it’s great to see all the crazy core exercises are working.
Based on the feedback from Dr. Park and the physical therapy team in St. Louis my physical therapist and I setup some new goals for the next 8 weeks.
- Strengthen my calf muscles, particularly the soleus. This should increase my step length, reduce the toe catching on my right foot, and help me achieve a smoother gait.
- Increase dorsiflexion range of motion to 20 degrees. I am currently at about 15 degrees.
- Increase hamstring strength and range of motion (this was on the last set of goals, let’s call it an oldie but goody) to assist with foot clearance in the swing phase of walking.
- Consistently run for 15 feet without right toe catching.
- Stand on either leg for 20 seconds without losing my balance.
Now that I am 4 months out some friends have asked me if I think I made the right decision by having this surgery. There has not been one moment when I questioned my decision to go forward and so far I have no regrets. If you have been following this blog you know it’s a lot of work but I want to explicitly state that benefits I have seen far outweigh all the work I have been putting in and I have no indication that this will change. During the visit I asked Dr. Park how long does it take for the average adult patient to plateau and he told me a year so I am planning on firing on all cylinders for at least 8 more months.