Parkinson's Disease Support Group

J, I just wanted to say welcome to the group and I hope you find solace and answers here. They are a wonderful bunch of folks, always willing to help.
I think perhaps you should be asking your doctor what's next...where do you go from here. I guess they do want to hold off on the drugs until your much older if possible...but maybe it's not possible. I suppose it depends on what kind of work you do, eh? My mom has the pd, but she is 87, so much older than you. She has been on Sinemet for close to 2 years now and does best on only that. Good luck to you kiddo, I'm sure you'll get lots of good advice soon, Melody

J
I'm 58 and was Dx'd in Feb. with PD. My symptoms went back a year but were mild and allowed me to be in denial until my wife noticed me shuffling and exhibiting stiff posture. Then the tremors, along with difficulty writing, shaving, brushing teeth etc made it obvious something was wrong. My Neuro also recommended staying off the Ldopa until absolutely necessary and now I take the new Requip XR which is helping quite a bit. You'll find this group will be very helpful with advise and empathy. Hope things improve for you soon......Billy

Hi J-

I've been on Requip 5 months now, and I experienced those same side effects in the beginning. My doc asked me to stick it out and give it more time, I did and really about 2-3 months into it the side effects went away. I have no side effects to the Requip now other than mild nausea if I take it on an empty stomach (have to eat first- then take it). I've been increasing the dose too- now I'm at 3 mg 3xday. It definitely has improved my symptoms.

I've heard many who do not tolerate Requip well, do better on Mirapex (another agonistic med) and vice versa... maybe it would be worth talking to your doc to try it instead?... Or, maybe trying the Requip again and toughing it out you may find the side effects will diminish with time?... just some ideas.

I'm 37 and while being treated with PD meds I have not been given a definite dx. I work full time outside the home and have young children. I worry too about my career and my performance abilities. A colleague has been watching me before and after starting Requip- she says she is amazed at how much better I function on the Requip than without. It's hard for docs to treat younger PD patients, because we are SO tied still to career and young families- I think deciding to take sinemet or not is the biggest dilemma we and our doctors face.

For me, quality of life- being able to work and have more play time with my kids is more important than anything. While I accept now that I have to have medication to help me function better, I don't want to forget to say that I exercise more regularly now and that, with my good eating habits, is also a contributor to my better functioning.

Hang in there and please get word to your doc soon that the Azilect isn't helping much... my doc is great with me emailing him, we've adjusted my meds that way without my having to book an apt to see him- it's nice when you work full time to not have to burn vacation/sick time for ever changing symptoms like we have.

((hugs)) Connie

Ya know, the more I thought about this, the more I thought maybe you should be on Sinemet or something like it..after all, you do need to maintain your job, the good and bad part of being so young. It's like "the good news is, your young enough, no need for the drugs. the bad news is your too young to quit your job"..
I understand they are working feverishly on finding a cure for PD, new drugs to help, perhaps it's time to live for today, deal with the pd today, even if a very low dose and when you get older and this med does not work as well, hopefully there will be another med by then...I just don't know about suffering today, because of what might happen tomorrow. I believe in thinking ahead of course, but don't forget to find a way to deal with today. love to you, Melody

j, i'm 51 and i've been taking L-dopa since age 49. i had pd symptoms in my thirties. my movement disorder specialist is tops. he has written and talked to groups around the united states. i was given L-dopa 10/100 3 times a day for diagnoses. i guess it depends on your dr's advice. sinement is what they usually start you off with. later on, a few years down the line, an agonist is added (amandine, mirapex, requip, etc.) when the sinement no longer works alone.

welcome

Welcome to DS. Since you, technically, don't have "young onset" PD, I would agree with the others. To maintain your job performance level and since sinemet is the mainstay PD therapy and might reconsider taking a small dose to start along with your agonists. I have been taking high doses of sinemet for 8 years and it HAS worn off but have since had DBS and am feeling great. My point: don't worry too much about the future. Treatments and cures are just on the horizon!

Again, welcome and good luck,
Don.

Excellent advice here from the people who are living it! Hope after you discuss with your doctor what you have learned here he and you will be able to come up with a treatment plan that works for you!

Yes, the conventional wisdom is to stay off L-dopa as long as possible, because you end up increasing it until the point where it loses its effectiveness and/or actually makes some symptoms worse. But to add to what donnagk said, sometimes they can start you out on a really ridiculously low dose and it can make a dramatic improvement. When they first started my Dad out on the normal dose, he was hallucinating. They had to keep cutting it back until he took 1/2 a tablet of the lowest dose manufactured 3x a day and he saw dramatic improvement. He was on that dose almost a year before they had to increase it. Then again, maybe it was because he was elderly that a smaller dose was able to have this much of an effect.

I would also like to suggest a video that someone else here has recommended because it talks a lot about diet and exercise. You are so young that changes in these 2 areas of your life would be easier to make than for someone in their 80s and might make a dramatic improvement in your condition. The video is here:

http://video.google.com/videoplay?...