Hello all! It's been a while! But as many of you that follow me on Instagram or Facebook may have recently saw my latest post about my shaky hands and I wanted to pop on here and describe more in detail so here we go!
I have talked before about the therapies I went through as a kid and one thing I have not mentioned is I got Occupational and Physical therapy through the state called CCS and the way the state works is they provide you services until you are 21 and then you are kind of left to "adulting" with CP where you have to find new doctors and therapies to work for your body.
Roughly 6 months ago maybe even longer I started noticing that my hands were more shaky than usual. When reaching for a glass or cup my hands are having a difficult time grabbing the cup or I spill the contents of the cup more easily. Now I take two kinds of medications Baclofen and Artane that are to help with my shakiness. I started these medications in high school and have had several adjustments since then. Well I have not change my dose for about 3 or 4 years and so I thought well it is time for me to find a new doctor that specializes in CP which is really hard as I need an orthopedic. I was discussing this with my parents and my dad did some research and found out that UCLA has a department for CP! This is exactly what I needed because I wanted to see about any new treatments. I had called on Monday and got in on that Wednesday and it was very informative! Here is what I found out!
1. I always thought that I hadspastic CP and talking with my dad I found out that yes as a kid I had spasticity in my left leg but that was because of growing and because I went to so many different therapies it helped to eliminate the spasticity in my body. So now I have what they call dystonic CP which means I have involuntary movements so like when I go to grab a cup of water my hands involuntarily tense up or shake, which makes a whole lot of sense..
2. The shakiness could be a result of me moving out on my own and therefore having to figure out how to do things and not having someone there to easily do it for me which can make my hands be more fatigued. Also since switching grade levels I am having to write a whole lot more than I did in kindergarten. This makes so much sense and never even crossed my mind! But it could also be as a result of my medication so I was taking 2 pills of Artane at night and now I will take 1 at night and 1 in the morning and see if that makes a difference.
3. There are no new treatments for me currently. I asked about getting Botox in my muscles because I read about how it helps with CP but that is only for spasticity so when you inject it it actually will loosen the muscle which is really not what I need. Additionally,, they said putting AFOs (ankle braces) on my feet can actually hinder more than help because my body has gotten used to the gait (how I walk) and because i am not falling all the time that there is no concern there.
4. Wow has yoga changed my life. The doctors were very impressed with how independent I am and how well I am taking care of my body. I do not have the tightness I have like I used to. He did mention to add cycling to my workout routine just to help strengthen my legs.
Overall, this was an extremely helpful appointment and I got a lot of answers. Since I am older it feels good to take initiative and be concerned and wanting to take care of my body. I am now my own
advocate. It feels good to know that what I am doing with my CP is exactly what I should be doing and boy am I proud of how far I have come
I have talked before about the therapies I went through as a kid and one thing I have not mentioned is I got Occupational and Physical therapy through the state called CCS and the way the state works is they provide you services until you are 21 and then you are kind of left to "adulting" with CP where you have to find new doctors and therapies to work for your body.
Roughly 6 months ago maybe even longer I started noticing that my hands were more shaky than usual. When reaching for a glass or cup my hands are having a difficult time grabbing the cup or I spill the contents of the cup more easily. Now I take two kinds of medications Baclofen and Artane that are to help with my shakiness. I started these medications in high school and have had several adjustments since then. Well I have not change my dose for about 3 or 4 years and so I thought well it is time for me to find a new doctor that specializes in CP which is really hard as I need an orthopedic. I was discussing this with my parents and my dad did some research and found out that UCLA has a department for CP! This is exactly what I needed because I wanted to see about any new treatments. I had called on Monday and got in on that Wednesday and it was very informative! Here is what I found out!
1. I always thought that I had
2. The shakiness could be a result of me moving out on my own and therefore having to figure out how to do things and not having someone there to easily do it for me which can make my hands be more fatigued. Also since switching grade levels I am having to write a whole lot more than I did in kindergarten. This makes so much sense and never even crossed my mind! But it could also be as a result of my medication so I was taking 2 pills of Artane at night and now I will take 1 at night and 1 in the morning and see if that makes a difference.
3. There are no new treatments for me currently. I asked about getting Botox in my muscles because I read about how it helps with CP but that is only for spasticity so when you inject it it actually will loosen the muscle which is really not what I need. Additionally,, they said putting AFOs (ankle braces) on my feet can actually hinder more than help because my body has gotten used to the gait (how I walk) and because i am not falling all the time that there is no concern there.
4. Wow has yoga changed my life. The doctors were very impressed with how independent I am and how well I am taking care of my body. I do not have the tightness I have like I used to. He did mention to add cycling to my workout routine just to help strengthen my legs.
Overall, this was an extremely helpful appointment and I got a lot of answers. Since I am older it feels good to take initiative and be concerned and wanting to take care of my body. I am now my own
advocate. It feels good to know that what I am doing with my CP is exactly what I should be doing and boy am I proud of how far I have come
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