When thinking of the future for a child with Cerebral Palsy or any disability, it can be scary. Daunting, even. A series of thoughts can go through one’s mind: denial, immediate future, long-term future, and maybe even thoughts of a cure. For Cerebral Palsy, there is no cure, although for people with Spastic Diplegia or Hemiplegia, doctors have come close by performing a procedure called a Selective Dorsal Rhizotomy, or as it’s most commonly known SDR. It is not a cure, it is simply hope. Now I am by NO MEANS saying that a child should have this procedure. What I AM saying is, as with any kind of procedure or anything at all, research is key. Due to the complexity of the brain damage done to the cerebral cortex, people like myself who have Spastic Quadriplegia, are not candidates for this procedure.
There is risk with everything, pros and cons to be weighed, and research to be done before surgery is decided on. I wish I would have known all of the facts before I had the Baclofen pump put in. Yes, so far, it’s the best option for people with Spastic Quad CP but it has downfalls I wasn’t aware of, things that, if I would’ve known, more than likely would have influenced my decision. Not only do people have to deal with the physical aspects of the pump, some people, like myself, need to deal with the emotional and mental aspect of it as well. Physically it helps, mentally and emotionally, it’s draining. When I am low on Baclofen, physically, I feel spastic, drained, tired, sometimes I feel nauseous, and unable to move. Mentally, I am very forgetful and sometimes become confused. Emotionally, I tend to get very depressed. I need to be sick for upwards of two weeks before I can get a Baclofen refill even though Medicaid doesn’t cover them because it is not deemed a necessity. Without refills, I will die.
After weeks, months, and even years on it, your body becomes reliant on it. For me, there is no alternative, I can’t function without it, I have tried to lower the dose in an effort to wean off of it. For me, it is impossible. The truth is, the Baclofen Pump is a foreign object in your body that can fail at any time, for any reason. It was a drastic measure that should’ve been a last resort. At 23 when I got it done, I believed everything that was told to me and physically it holds up for the most part. In the grand scheme of things though, “quick fixes” aren’t all they’re made out to be. As a child I didn’t understand my need for PT and as a young adult, I just wanted a “quick fix” and didn’t want to put time and effort in. Now as an adult, I regret both decisions and I regret that I was never told the whole truth.
Cerebral Palsy isn’t my fighting battle now as much as Dystonia is. Baclofen lessens spasticity but does nothing for Dystonia. The things I have found to help Dystonia are Physical Therapy and Yoga. Surgery is a last resort. Have your child (or yourself, if you have a disability and are reading this) put the effort in doing Physical Therapy as a child so the maximum potential is reached by the time they become an adult and they won’t have to make up for lost time doing the therapy they should’ve done as a child, as an adult. I am grateful to have found Christine and Breakthrough. Even though I have only been going there for 3 months, I have seen improvements that I’ve only dreamed of.
- Accessibility: Still A Long Way To Go - May 29, 2019
- A Valuable Lesson – Research is Key - November 18, 2018
