Last Baclofen Pump Update

[djlamar2]

I understood you completely. It is hard to get people to understand I know that for a fact. For years people didn't understand exactly what I was saying. (They still have a hard time but not as much)

[erichitz79]

LOVE your devotion to the videos  <3

[ibeawicked1]

What dose is your pump programmed to? Mine's at 177 mcg and I haven't noticed a huge difference.

[powerchairchick]

@ibeawicked1 it was 110 mg in this video. now, its about 180 mg

[fragmaka]

@powerchairchick Hi Nicole. My Name is George. If I was a carer or helper of yours and cried.........what would u think of me?

George

[PauleQueenie]

Are you disappointed that the baclofen pump did not release mmore of your spasticity and let you improve a lil more than what you have accomplished?

[powerchairchick]

@PauleQueenie yes. it's hard to say, though because I have more athetosis than spasticity

[PauleQueenie]

@Nicole (?), thank you again for replying to my comment. I think it is a brave decision to have baclofen treatment started and/or stopped, and of an even greater bravery and intelligence to admit disappointment when the results you hoped for haven't quite happened (yet). You are young and you never know with sciences progress (without unrealistic hope), you might have one day a better treatment approach than you had yet. DON'T give up and have a MERRY XMAS, PROSPEROUS and HEALTHY NEW YEAR 2011

[powerchairchick]

@PauleQueenie yes, my name is Nicole. no problem. thanks! you too!

[PauleQueenie]

@powerchairchick, Nicole is a beautiful name. Take care and let me say that you definitely look lovely with a hat.

[sehille4774]

Hey. Sorry if you have already answered this question..but I was wondering if you were happy with the improvement..ie was it worth doing? From the videos it definitely looks like a good improvement. Thanks for sharing your videos! How is college going for you! You go girl!

[powerchairchick]

@sehille4774 yea. i mean, it didnt help as much as i hoped it would but it helped a significant amount. college is going well. i just started back sept 1st

[donnywinn]

Hello i was curious to see if the Bacolfeb Pump set back your recovery???

Because for me it set me back big ttme?

[powerchairchick]

@donnywinn recovery from my disability? u cant recover from cerebral palsy

[walkingdan]

Are you still on the pump with 110mg per day? Have you experienced when the pump stop working or a withdrawn symtom? Daniel on orally right now with 50mg per day. Daniel's mom

[powerchairchick]

@walkingdan i think im up 2 120 or 140. no, my pump hasnt malfunctioned.

[walkingdan]

@powerchairchick Thankyou for sharing and for the update. Is that mean the pump put out the med 2x per day? Can you link me the video before you started with the pump. I like to see the different in your movements. Or do you mainly use the med to control the pains? Can you feel the pump is working, when its time for it to admin. the med?

[badiavlo]

You are so cute:)

[heleniita25]

when it ur birthday?

[powerchairchick]

06/27/89

[sarejarm]

Looking good, Nicole... Yes You're exactly right!!!!!! The Pump is not a cure.

[aurora07rose]

My son has a neurological condition, not the same as yours , but he does seem to be improving slowly, we think a lot of the relapses are down to puberty. He was actually offered a baclofen pump, thankfully it did'nt come to that although he did have a dbs fitted. I wish you all the best, tc xxx

[TheHurtAndTheLost]

Best wishes hun! <3

[xokuiki1]

i can understand what do you, and i hope you the best.

[powerchairchick]

thanks!

[tatscat001]

I am saddened that you will no longer be updating us. I think you are a very beautiful young lady that has lots to say . Dont let the handy cap get the best of you. You could always use a communication aid to speak for you. Have you been tested for heavy metals? I never gave much thought to what disabled people go trough tell I ran into your page. My mom had that pump installed and it helped with pain.

[powerchairchick]

thanks. i never let my CP get the best of me. theres no reason 2. i can walk (with help), talk, & breathe. pity is never good. i know many ppl who have a lot more severe disabilities than i do. i much prefer speaking because the message comes directly from ME. some ppl assume when i use the aid that some1 other than me entered the text. y do u wanna know if ive tested 4 heavy metals??

[bruxbel]

Happy that's better and better.

thanks for all the things and the hope you give.

[00arzu00]

you should still make movies, though! just about other stuff... like that time you spoke for the campaign thing and you know daily vlog stuff

[danucp135]

CAN I talk to you about a project what I am working on call4ed (sleeping bag therrapy

[powerchairchick]

@danucp135 id rather not