Current physican care not so great :-(

Post your experiences regarding physician care for Cerebral Palsy - Good or bad

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Current physican care not so great :-(

Postby admin » Mon May 22, 2006 2:00 pm

Hi all,
I am currenty a member of Kaiser. It seems to me that Kaiser does not know much about cerebral palsy. My Dr. never really gives me any good recommendations or advice on dealing with CP and usually refers me out to someone else if I have questions on braces, exercies, etc. All he really does is monitor my baclofen pump and he is not very good at that either. When I go in requesting an increase he always discourages it and makes me give him many reasons on why I think I would benifit from an increase. Then he checks my muscle spasticity and tells me how much better it is and how he thinks that I will not benifit from an increase. He acts like he knows my body better than I do. Is this just Kaiser or do any of you run into the same issues with other providers?

Tmagic650
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Postby Tmagic650 » Mon May 22, 2006 5:59 pm

Kaiser is pretty poor from my experiences and some of my friends in California and Hawaii. I was liucky to have had private Orthopedic doctors for most of my childhood. I went many years without seeing a doctor for my CP. I am 56 and I found a great doctor specializing in Gereatric care. This may sound strange, but with all the wear and tear on our bodies from the CP and it's affects, we age a little faster than some. My new doctor is a woman and she is my age :wink:
Spastic Diplegia CP
aka Kurt... Sometime walks, sometime rolls

solgen
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Postby solgen » Sun Aug 06, 2006 9:32 am

I'd like to ask celebral palsy patients, [like Tmagic650], at what age were you able to talk and walk? My son is already three years old and is undergoing physical theraphy sessions everyday. :?:

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Postby Tmagic650 » Sun Aug 06, 2006 11:17 am

My speech is not affected so I began to talk at around the age of 2 or so. I walked using full leg braces and tripod canes at age 5, but I could crawl very good before that age...
Spastic Diplegia CP

aka Kurt... Sometime walks, sometime rolls

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Walking

Postby admin » Mon Aug 07, 2006 9:11 am

Hi Solgen,
I did not begin to crawl until I was about 3 years old. I began walking around 4...I think. Its been a while :-) I think I began talking around 2. My CP mainly effects my legs.

I was able to walk with the assistance of crutches and leg braces. I wore the braces up until I was about 14 years old. I have been through many surgeries to help with my spasticity and am now able to walk without the crutches. Still need them to be able to walk log distances or over rough terrain.

What degree is your sons CP? Does it effect all his limb movement or just upper or lower body?

Tmagic650
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Postby Tmagic650 » Fri Jan 26, 2007 2:33 pm

Yes, I'd be happy to help...
Spastic Diplegia CP

aka Kurt... Sometime walks, sometime rolls

Tmagic650
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Postby Tmagic650 » Fri Jan 26, 2007 2:39 pm

I was thinking about the subject of Physican Care for Cerebral Palsy... Because I will be 57 soon, I see a doctor who specializes in Geriatrics. Many of us regardless of our age, have issues with muscles, tendons, joints and bones. Older Able Bodied folks have these issues too. My doctor understands my condition and has been of great help to me. It always a great thing to have your doctor understand where you are coming from
Spastic Diplegia CP

aka Kurt... Sometime walks, sometime rolls

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Thanks Tmagic

Postby admin » Fri Jan 26, 2007 2:50 pm

Tmagic,
I just made you a moderator. Feel free to remove any posts that contain SPAM. Thanks for your help. I am really going to need it. I have not had as much time to moderate these forums as I would like as I am working on starting up my own business. I still try to come in a few times a week and check things out. I am also going to be going in for surgery soon. I have a consultation with an orthopedic surgeon on 2/1/07. I am going to see what he can do for me regarding some problems with my foot. I had surgery about 13 years ago to rotate my hip out on my right side. Ever since then, my foot on that leg points outward. I was told at the time that it would eventually correct itself but it has not. They are going to break my ankle and do heel cord releases on both feet. Should be fun :-). Sounds like I will be quite immobile for a while.

Thanks,
Mike
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Postby sarahsmom » Wed Apr 08, 2009 10:56 am

Mike- How did the surgery go? I noticed it was last year but no updates!
Want to see a pic of my DD Sarah? Go to her blog at http://helping-sarah.blogspot.com

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Postby admin » Thu Apr 09, 2009 3:19 pm

Hi there! The surgery went pretty well. My foot is a lot straighter. Had a couple nice falls after the surgery but luckily it did not cause any complications. They gave me a walker to use but I found it much easier to get around using my normal lofstrand crutches. I also have some irritation from time to time due to the metal thats still in there. The Dr. said that they can remove the metal if it gets too bad. Other than all that, it made quite a difference and I no longer trip on my own foot as much.

Thank you so much for all your recent contributions to the forum. It's always good to know that people are getting some use out of it. I like the info you posted regarding the stem cell research. I never knew about all the rejection issues that can occur. Keep me updated and let me know how things go with the place you found in Germany.

-Mike

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Postby sarahsmom » Fri Apr 10, 2009 4:02 am

Mike- It sounds like your surgery was an all around success. I'm so glad to hear that. I also read another post (that was a little older) that you had gotten married. Congrats! I know it sounds silly, but reading that helps me feel like it'll be ok for my DD. I'm young now (25) but I wonder what will happen to DD when I'm gone and can't take care of her. That's why I keep pushing her to do more therapy and looking at stem cells. If I can improve her quality of life so she can be more independant, I'll feel comfortable when I have to go. Reading your posts and others on here with CP makes me feel like she'll eventually get to where you guys are. Sometimes I wish I had a crystal ball just so I can know what will happen with her!! LOL!

I'll let you guys all know about what happens in Germany. We should be going there June 22 if all goes according as planned. I actually set up a blog for her (which is in my signature) that I planned to have document this whole thing!

- Lina
Want to see a pic of my DD Sarah? Go to her blog at http://helping-sarah.blogspot.com

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Postby admin » Fri Apr 10, 2009 10:56 am

Yeah, I'm sure Sarah will turn out fine! When I was younger, I went to a lot of camps for people with disabilities and ended up meeting a lot of great people there. Might be a good option for Sarah when she gets a little older. It was good for me to meet with others who were going through the same challenges as I was and learn how they dealt with situations. There was one that I went through that was managed through UCP that had motivational speakers with disabilities that held some high ranking jobs. Really helped burst moral and made me learn that even though I had a disability, I could get a good job and live a normal life. I ended up meeting my wife in high school, landed some jobs and now I am with a company I have been with for 9 years now, making some decent cash and a nice living.

I also owe a lot of credit to my parents. They pushed me pretty hard to live a normal life and did not treat me differently because of my disability. My dad would take me on hikes with my brothers, make me help with the same chores as everyone else, etc. Even though I had a hard time sometimes, at least I gave it a try and learned to adapt tasks around my disability. They also pushed pretty hard to make me do exercises, get surgeries and treatment, etc. Even though I did not see instant results, it helped out in the long run and made me much more mobile and able to do the things I do today. Talk to you soon.

-Mike
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Postby sarahsmom » Sun Apr 12, 2009 10:48 am

Mike- There are quite a number of camps here, but like you said, its for when she gets older. Right now, I don't even think she knows she's different and we try not to treat her differently than we would if she was a typical child. I'm sure it didn't just end up helping you to know that you can still get a great job and live a normal life with a disability, but I'm sure it helped your parents too. It helped me to read about your story because I'm always a bit stressed about Sarah's future.

My husband and I are very excited now for Sarah. Hopefully, we should be taking her to Germany on June 22 for the stem cell transplant. I'm really hoping we see some positive results although I understand it'll take some time for anything to come out of it (if anything does). I've even set up a blog for her ( http://helping-sarah.blogspot.com ) that family and friends follow because its just easier to share news there. What's disappointing is that I contacted some local TV stations in our area (Tampa Bay). I thought that perhaps they might be interested in getting this information out to parents or family members of those who are affected by CP. It might be a big help to them, but none of the stations responded to my request. I'm still planning on taping our trip at least for our own records and perhaps for Sarah to see when she gets older.
Want to see a pic of my DD Sarah? Go to her blog at http://helping-sarah.blogspot.com