I am an adult with a type of Cerabral Palsy called Spastic Diplegia. I launched this blog in January 2012 to chronicle my experience undergoing Selective Dorsal Rhizotomy (SDR) surgery as a treatment for Cerebral Palsy. SDR is not a cure for Cerebral Palsy; however, my research leads me to believe it is the most effective treatment for people who suffer from CP as it is the only treatment I have found that permanently reduces spasticity.
When not blogging you can find me obsessing over all things tech, working out, watching TV, or scheming on how to see another part of the world. Find me on the net:
I have just watched your videos and am really impressed with your progress at this early stage. Well done to you. I will follow your progress with much interest as my son Matt is considering having SDR. His is mid way through his A levels at school and is torn between finishing his studies which he needs to get into University or having this life changing op. Its a difficult one! He is 17 and we are thinking perhaps he should finish his schooling (another year) then really concentrate on the SDR or abandon school and go for the op (which is what his Dad thinks he should do). Realistically not sure that he would get through the exams if he had to do all the rehab too. What are your thoughts?
Best wishes to you,
Hi Deborah, I am glad that you and your son are finding the blog helpful! I think your son’s decision is a difficult one – although with the benefit of being a few years older I have learned that in the grand scheme of things one year either way may not make much of a difference. That said, I feel like more details would be helpful. Has your son applied yet to see if he is a good candidate? Is it possible to maybe try and schedule the operation at the start of summer break so that he will have the summer to really focus on the rehab. Etc…Happy to help in anyway I can. Even chatting offline via email or maybe video chat on Skype.
Thanks for your advice. Sorry I haven’t replied earlier, I am so tied up with organising a fund raising dinner for the 2nd March my charity I set up for children with cerebral palsy. Its My Life trust offers Conductive Education sessions for children and teenagers with cp and this is what Matthew has done practically all his life. So after tomorrow I would really like to email you offline as I value your thoughts on SDR. I have emailled the hospital and gathered all the videos etc ready to send to the hospital but we’rewaiting for one ‘our’ boys to come back from St Louis. He is there now 3 weeks post op. He is the second boy to go from our centre but they are much younger than Matt.
Do email and I’ll reply.
ps Read your blog, of course, and think that being able to keep both feet flat and bend is a milestone I’d say. Brilliant.
Your blog is great! Congratulations on your progress! I am considering SDR. I will be sending my info for evaluation as soon as I can get a referral to a PT. I would love to e-mail you and/or chat on Skype.
I am glad you find the blog helpful. I would be happy to talk with you. You can reach me at email@example.com.
Great! Thank you! I’m so glad we are connected on Facebook, now. 🙂
I found your blog from googling cerebral palsy and running. I am 35 years old and have CP on my left side. I noticed things getting harder and more painful as I got older. I’ve had a few doctors not take my complaints seriously since, according to them, CP isn’t a progressive disease.
I’ve since found a great doctor and spent a lot of time on PT, yoga, etc. A few years ago, some friends ran the Twin Cities Marathon (where I live), and I thought about how much I’d like to try to run. This is something I’ve never been able to do for more than several seconds at a time. (I have asthma as well.)
This spring, I finally started a couch-to-5k training program with the blessing of my doctor and physical therapist. I can now run 2.6 miles at a time, and am hoping to be able to do 5k by Thanksgiving. I never, ever thought I’d be able to do this. As far as accomplishments go, this one is right up there with getting my doctorate. Maybe even better than that.
I am so %&%* excited to see other folks with CP running! SO. EXCITED. ❤