Sunday, February 06, 2011

Aging with CP

I am convinced that ABM is the right thing for Avery. I was pretty sure when we started seeing her doing new things after our second sessions last summer, but I have become absolutely committed after learning more of the philosophy and ideas behind the method, and especially after spending a lot of time learning more about the long term effects of CP on a body.

Spasticity and increased muscle tone are just symptoms of a problem whose root is actually in the brain itself, so it seems to me that just just trying to "fix" the muscle problems with uncomfortable braces and painful stretching is like trying to eliminate the smell of a rotting fish by spraying the room with perfume. It might smell better temporarily, but the fish will just keep on getting more and more rotten, so when the perfume wears off, the smell will be worse than ever.

Of course, we have only just started researching all of this recently. It appears that there really haven't been many studies done on the long term effectiveness of aggressive PT on CP children, but the few things that we have found have not been encouraging.

This article has this to say:
Most treatment and research is done on children with cerebral palsy. Little research has been done so far on aging and cerebral palsy.[...] Studies have also shown that adults that had a large amount of childhood physical therapy (4 to 5 times a week) over a long period of time (4 plus years) have negative lasting effects with aging and cerebral palsy.
Here's another one:
Adults with CP experience musculoskeletal problems and loss of function that non-disabled adults do not experience until much later (IOM). A study indicated that 75% of individuals with CP stopped walking by age 25 due to fatigue and walking inefficiency (Murphy). Another study on young adults with CP found clinical evidence of arthritis in 27 % of subjects vs. 4% in the general population (Cathels). These challenges result in chronic immobility, harming bone health.
Also read this. It makes you realise how little medical attention is routinely given to CP patients once they reach adulthood.

Of course, this has all been a lot to think about, but the one thing I am sure of is that while the ABM may be taking a slower route towards independent walking, it is a much healthier route, and will result in a healthier and more comfortable gait for Avery once she does reach that milestone.

Did you know that even until the 1800s, bloodletting (ie, cutting you and letting a certain amount of blood drain from your body) was a pretty standard treatment for anything from the flu to diabetes? It seems crazy now, but they had it down to a science back then, and some people swore by it. I have begun to think that maybe the current standard for treating CP during childhood will some day be looked back upon in a similar way. 

3 comments:

Angela said...

Sadly, it is very true how little care is for CP adults. What we do have most of the time seems like we are either being used for a science experiment or we are told there is nothing they can do and live with it.

You are a great advocate for Avery and she will walk independently one day, and she will be doing it CORRECTLY!!

Anonymous said...

Your arguments make so much sense Josephine. In the light of the progress Avery has made since starting ABM, the traditional methods already seem outdated, not properly thought through, and a little barbaric. I have no doubt that someday Avery will "run and run" and do all the things she so believes she will be able to do, especially with you fighting her corner.

Ms.Manda said...

I just read your blog post-- I am a social work student with mild CP (Spastic Diplegia). As part of my gerontology course I have to make a plan for aging so I was looking for material regarding aging with CP because this would obviously be required. You're right there is very little info of the medical variety on the subject of long term effects on the body as we age. I find as I get older (I'm 26)the go to recommendation for most doctors is PT for every ache and pain with little individualized care. When I was pregnant with my first child I experienced increased spasticity which was very noticeable given the mild degree of my CP. When I asked the doctor if this was related to the changes brought on by pregnancy I was told they didn't know because they had never treated a person with CP who was pregnant. I know this is not something you two will be needing to worry about for the time being but later in life maybe :) I hope by the time your little one reaches this age people have realized this is an area that needs to be studied. Also you are absolutely right about gait training. I am completely comfortable in my gait after many years of surgery and finding ways to adapt I function completely independently. Even though people assume one would want to "look" as normal as possible I think the important part is finding a comfortable way for her to function. Best of luck with your research!

And since Avery may not realize it yet I will say my mom was my number one advocate as a child and encouraged me to do things in a way that was comfortable for me making sure I knew that life wasn't about my limits but finding ways to do things that were right for me. You seem to be doing the same for Avery I promise you she will be forever grateful for that kind of love and support.