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Posted 11/15/2007 1:54 AM (GMT 0)
Hello iam new to group. I was dx almost two years ago and was started on sinemet 25/100 aday  along with comtan . After a year i was then moved to 5 sin. ,comtan and requip .5 three times daily. There have been only slight improvement. My simptons are left sided tremors constantly , although at various rates .Left arm locks in place while walking and rigidness in legs, back and neck. I do also have six hern. disc  and was wondering if anyone experience pain with the pd or do i associate that with back problems.

       My neuro now wants me to educate myself with dbs. I have to admti i have been in somewhat of a denial in that i thought dbs was last resort, 

         I live in ny and raised two girls myself . I am on ssdi and took  early retirement at 57. confused Any info would be greatly appreciated   Sincerely b

Posted 11/15/2007 9:25 AM (GMT 0)

wbab,

welcome to healing well. glad you're here. I would like to respond to your comments regarding meds and also dbs.

 

I'm not familiar with sinemet and comtan dosages other than it seems folks start on sinemet 25/100 and that comtan is used to even out the effects of sinemet - the highs/'ons' and lows/'offs'. I do know that your dosage of requip is extremely low. The 'normal' (what is that anyway?) range for requip is 9-24 mg/day.

 

As a side note, I think you meant you are 57 years old now or close. You have many rewarding years ahead of you. I would prefer to investigate non-Sinemet alternatives such as the dopamine agonists like Requip or Mirapex. Sinemet works the best but sometimes becomes less effective and/or develops side effects (dyskinesia) after about 5 years. That's not true of everyone, but I would encourage you to research Sinemet and make an educated decision. You have the greatest interest in your well-being.

 

DBS. It used to be that DBS was recommended only for folks who had exhausted all other alternatives. That philosophy is changing. However, it still is a very individualistic decision. It's brain surgery. They cut a hole(s) in your head. There always is a risk of infection and complication. DBS is generally said to give you the last 5 years of your life back. Which 5 years would you like - those more affected ... or less? What is the risk worth to you?

 

I am NOT a medical expert. I encourage you to do your own research. As I have said before, nobody cares for you like you do/should. Educate yourself. You are your best advocate.

 

Best of luck on your journey. We'll be here for ya. Is a wealth of information and expertise in the folks here.

 

lizzy4451

Posted 11/15/2007 12:51 PM (GMT 0)
   Thank you lizzy for the warm welcome. I was just 57 in oct. I will certainly take your advice and speak about the dosage of requip with my neuro. I must say the thought of drilling a hole in my head doesn't sound too appealing. And your right on the point of i myself am yeah best at deciding whats best for after gathering the right info and options re: my health  thank you again   bobp
Posted 11/15/2007 1:09 PM (GMT 0)
wbab,Welcome to Healing Well.I understand what when you ask if the pain is pd or back pain.I have degenerative disc disease in my lower spine and the pain is definitely noticeable .many with Pd have a stoopng posture which my neuro and spine specialist seem to think aggravates the situation.In my case I think the pain is a combo of poor posture (tks to PD),and collapsing spinal discs.
AS for sinemet comtan together,if you haven't already done so,ask your neuro about stalevo.Thsi puts comtan and sinemet together in 1 pill.I take stalevo 25/100 3x.This seems to work for me.I tell the neuro what works for me not the other way around.He doesn't have Pd ,and I have experimented muchly to find a a combo ,and timing that works for me.With as low a daily dose of sinemet that I can function with.Wish you the best,and stay in touch.Ed
Posted 11/15/2007 3:03 PM (GMT 0)
Hi ed, Thanks ror t response and it makes sense about stalevo. I guess it was hard for you too with the back . Im finding alot of info just view the site  thanks again for the multi tasking job you took on   bobp
Posted 11/16/2007 2:18 PM (GMT 0)
I'm in Sinemet for 17 years but still working well with me. I'm also in Mirapex and amentadine. It's true that that the side effect of Sinemet is dyskenesia but you can cotnrol this with the proper management of your medicine.
I've bee recommended for DBS five years ago but I don't want to take the risk. I'm working to a resident care facility for the elderly and we have clients who undergone to the procedure (DBS) but with no help. Some of them became even worst. The'y can't talk after the surgery. It depends to the individual. To some DBS is beneficial. Yes, you have to educate youself on PD to learn to accept and live with it. and you know PD is not as scary as what you think of.
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