[Jim091866]

Regarding Duodopa, Abbott had its third quarter conference call yesterday. I don't know what was released but they said in the months prior that they expected to make application for approval to the FDA at the end of the year. Well c'mon folks this thing is in some 30 countries outside the US and it was "fast tracked" way back around 2006! There are few other things on in the pipeline. I read that the extended release carbidopa/levodopa is to be on the market some time around the end of this month. Just trying to keep up on the latest but there doesn't seem to be much.

[soccertese]

http://benthamscience.com/open/toneu...6/37TONEUJ.pdf
EVEN if approved, will insurance pay for it and what facilities will offer it? and do you really want it?
i assume costs will come down and risks decrease over time.

[Jim091866]

Originally Posted by soccertese

http://benthamscience.com/open/toneu...6/37TONEUJ.pdf
EVEN if approved, will insurance pay for it and what facilities will offer it? and do you really want it?
i assume costs will come down and risks decrease over time.

Yes, yes and yes. I live relatively close to UF, a PD Center of Excellence. Dr. Okun is there in the clinic and I am sure they will have an utmost of skill with this. Can't wait to go.

[Conductor71]

Originally Posted by Jim091866

Yes, yes and yes. I live relatively close to UF, a PD Center of Excellence. Dr. Okun is there in the clinic and I am sure they will have an utmost of skill with this. Can't wait to go.

"Do I really want it?" Yes, two years ago I lost the ability to go anywhere alone with my young son who is now 3 1/2 - the freezing is unpredictable and does not readily respond to extra levodopa, so I cannot risk being suddenly immobilized when he still needs me to be there for him. My neuro says this is not PD, but can't venture a guess as to what it is. Interestingly, I hear of many cases of PWP freezing after they have DBS! Just learned of a young onset woman who was falling before DBS and now is freezing with panic attacks. I really think a lot of what happens to us is caused by the medication further perturbing an already out of synch free-for-all neurotransmitter system. I suspect DBS further messes with that by interfering with firing rates.

Duodopa is so less invasive and such an easy, proven solution; it is no different than the insulin pump technology which has been helping people regulate their blood sugar for decades. Yes, the pump may come loose or there might be infection but it is isolated to a problem in one area- with DBS, people have a large risk of losing speech function and/or motor function. Clearly mucking about in the brain and sparking lead wires can have serious impact. I honestly see DBS as the Beavis N' Butthead guide to managing PD- everything is better with "fire". In my opinion, it is common sense to see that the solution to a quickly and crudely metabolized oral treatment is to ensure you have a minimal stable level in the bloodstream not to start trying to conduct synaptic firing. I will take my chances with a loose tube, thank you.

[Bob Dawson]

[QUOTE=Conductor71

I honestly see DBS as the Beavis N' Butthead guide to managing PD...

Hahahaha!!! That is a great line and I will plagiarize it.

[GregD]

[QUOTE=Bob Dawson;923917][QUOTE=Conductor71

I honestly see DBS as the Beavis N' Butthead guide to managing PD...

Hahahaha!!! That is a great line and I will plagiarize it.[/QUOTE]

While this line is hilarious, there are those of us that have run out of options and DBS has not only worked extremely well but has given us our life back.

[soccertese]

conductor,
I think there is a lot more potential risks than just a loose tube, infection being one. but i get your point, just playing devil's advocate but i apologize if i was being insensitive, i'd feel exactly the same if i was in your shoes.
fwiw, I've read that when given the choice, more people choose DBS. I imagine if you live far away from the clinic or live alone, a DBS, if you qualify, might be the only solution since it sounds like DUODOPA is higher maintenance and requires the help of a caregiver.

[Bob Dawson]

Originally Posted by GregD

... there are those of us that have run out of options and DBS has not only worked extremely well but has given us our life back.

Completely true, GregD; Kate Kelsall at Shake Rattle Roll, for example, spent two years struggling with DBS and she thought it was a failure; she got it under control and leads a very active life - helping others go in for DBS. That kind of mentoring that she does is a big help, guiding people through the process. On the other hand, there are reasons to hesitate. It is one of a number of choices we have to make, with uncertain results. Kate's story shows that if you do have DBS, don't declare defeat if it is not great at first; she took two years to adjust and then went back out into the world full force. Other people benefit immediately. Others, it seems, do not benefit, and we all hope less invasive techniques will be found, but I visualize Beavis N' Butthead arguing over whether you want to be able to talk or walk. One could do each.
If that was an absolute choice, which would you choose? I would want to walk, simply because I have said more than enough for one lifetime, but I still want to walk in my forest every day.
I told my neuro that DBS would be much more popular if the remote control was not just ON / OFF. Add in Mute, Rewind, Fast Forward, Slow Motion and Spanish and it would get interesting.

[Jim091866]

Originally Posted by Bob Dawson

Completely true, GregD; Kate Kelsall at Shake Rattle Roll, for example, spent two years struggling with DBS and she thought it was a failure; she got it under control and leads a very active life - helping others go in for DBS. That kind of mentoring that she does is a big help, guiding people through the process. On the other hand, there are reasons to hesitate. It is one of a number of choices we have to make, with uncertain results. Kate's story shows that if you do have DBS, don't declare defeat if it is not great at first; she took two years to adjust and then went back out into the world full force. Other people benefit immediately. Others, it seems, do not benefit, and we all hope less invasive techniques will be found, but I visualize Beavis N' Butthead arguing over whether you want to be able to talk or walk. One could do each.
If that was an absolute choice, which would you choose? I would want to walk, simply because I have said more than enough for one lifetime, but I still want to walk in my forest every day.
I told my neuro that DBS would be much more popular if the remote control was not just ON / OFF. Add in Mute, Rewind, Fast Forward, Slow Motion and Spanish and it would get interesting.

Not to mention I'm now a recognized wi-fi site, I get all the channels better than Direct TV! Not to mention the NFL channel! Real wireless internet!

[lurkingforacure]

I have read the cost for the duo annually will be close to 120K, 10K per month for the gel you put in. Yeah, does anyone think insurance is going to cover that? I don't know anyone short of MJF or Grove who could afford that....oh yeah, and Brin and family. If correct, then the pump will be out of reach for almost all of us.

Another thing to consider: our neuro told us he questioned the wisdom of giving the patient the ability to self-administer. While most would not, I have read of more than a few PWP who overdose on sinemet and if taking it directly into the small intestine eliminated the nauseau and some of the side-effects, I could see where one might be motivated to take more than the minimum amount needed to get on since the unpleasant side effects wouldn't be there to stop them. This could actually be dangerous, as well.

I see both sides, and honestly dont' know what we will do when we get to that point. But we need all the information there is, the good, the bad, and the ugly, as they say.