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Old 02-11-2013, 05:45 AM
Lemonlime Lemonlime is offline
Junior Member
 
Join Date: Nov 2012
Location: Atlanta, GA
Posts: 40
10 yr Member
Lemonlime Lemonlime is offline
Junior Member
 
Join Date: Nov 2012
Location: Atlanta, GA
Posts: 40
10 yr Member
Default Thanks!

Hi RLSmi

Thanks so much for your response! It seems, from your experience and everything that I have read, that low dosages work best. That seems to be a reoccurring theme with PD meds...moderation being most effective. It looks as if they have known about the potential of Dextromethorphan being neuroprotective for a long time. I've read research papers dating back to 1993, citing possible neuroprotection of neurons. It's unfortunate that no one has taken the initiative for a clinical trial due to funding. It sounds like it would be a perfect study for the lab rats or impatient patient.

We are at cross roads with my husband right now. He has been on Azilect since dx 8 years ago, but the time has come for additional meds. We are exploring all options and would like to add DXM, but there seems to be serious life-threatening contraindications with taking both!

We are currently trying to decide whether to drop Azilect, which could also be neuroprotective, add DXM and start Sinemet. Or, if possible, wait for a neurotrophic factor trial - GDNF & MANF both seem to be promising. We are meeting with the MDS soon to discuss options and are open to suggestions.

He is tremor dominant and has some slowness. Of course, our main goal is, first and foremost, keeping him comfortable and then working as long as he can. (we have 3 young kids) Our main fear is starting Sinemet, having dyskinesia and not being able to work. Now that some of you have reported having reduced dyskinesia is yet another reason to try DXM.

It's so remarkable that you are on such a low dose of Sinemet after all of this time....14 years? That's so great! Please keep us posted! I hope you are able to work out the mild dyskinesia that you are experiencing and glad to hear that it is a mild form. I hope you have continued success with your slow progression!
I have two more questions, if you don't mind.
From my research, the effects seem to peak around 2 to 4 hours. I was curious if you suggest taking the DXM at night or if that just works for you?
I was also wondering if you have experienced any side effects from taking it for such a long period?

On a side note....I just wanted to say Thanks! Everyone here has been so nice! My husband is my soulmate of 25 years and I just want to help him and everyone else in any way that I can! I am committed to contributing, advocating, praying, researching and even participating in "lab rat" trials...through reports from my husband or even being a variable, if it helps. I am an Interior Designer who now also studies the design of the brain. I have a lot to learn and I am so grateful for this forum!!!! So, please feel free to correct me if I get something wrong.

Thanks!
Cynthia
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