Jump to content
helplinedonate
MusicMan

DBS and the future

Recommended Posts

I asked my local MDS what he thinks will be happening with this disease in 10 years (being that I'm recently diagnosed) I was particularly interested in what he thought medicines would look like in a decade. He said that DBS is the more exciting direction that treatment is headed,...that it will be much more common, accepted, and helpful. Even for those in earlier stages of PD. As they do more and more of them, and more research is gathered from each surgery performed, that it will continue to get much better and more targeted to the individual needs. Of course, there is that whole COST issue...

 

Pretty interesting, but still a bit scary to imagine having it done. Thanks all you "pioneers" who have gone before me

Share this post


Link to post
Share on other sites

With far more demand for DBS procedures and greater competition as between providers to supply the service,  the costs should come down.   I thank Barrack Obama for insuring that not just the upper class will be benefitting from this new paradigm.  Science assures there will be advancements -- their equal distribution will be the fight.  I await Patriotm 's take on this.  Patriotm...?

Edited by Rogerstar1

Share this post


Link to post
Share on other sites

My MDS thinks I am a good candidate for DBS and recommends it. Problem is that I've only been benefiting from Sinemet for a year and a half and it has made a huge improvement in my life. I would like to extend this Sinemet honeymoon. Of course doing that erodes my suitability for DBs. Then again, delaying the surgery offers the advantage of getting more of the latest advancements. And more experienced teams of surgeons and follow-up care.

 

I fully expect to undergo DBS, just not sure when is the best time for me. Hopefully my "gut" will know.

Edited by Oakman

Share this post


Link to post
Share on other sites

 I would like to extend this Sinemet honeymoon. Of course doing that erodes my suitability for DBs.

Not sure I understand the issue here...? By taking Sinemet you reduce the potential benefits of DBS or it's suitability for you?

  • Like 1

Share this post


Link to post
Share on other sites

I'm dubious of a doctor who would recommend brain surgery in a situation where the patient has been on Sinemet for a year and is doing well!!  Like Musicman, I would like to know more.

  • Like 1

Share this post


Link to post
Share on other sites

Doctor's are now looking to use DBS sooner rather than later for young patients that have good dopamine response (sinemet works well).  From the MJFF site:

 

MJFF: How do you expect DBS to be used moving forward?

AL: We are now moving forward with research into DBS treatments that might begin to treat non-motor symptoms of the disease. Traditionally, these symptoms are unresponsive to surgery. But there are different circuits in the brain, and each has its own unique job to do. Some are for tremor, some deal with rigidity, for example. Others regulate cognition and depression. We now believe that if we focus on specific circuits, we can isolate treatment for more specific symptoms. It’s like if you took your car in to get repaired — just because you need a new muffler doesn’t mean you also need to fix the engine. And even if you did, you wouldn’t expect the same procedure to fix both parts of the car. 

We are now analyzing areas of the brain which are involved in generating non-motor symptoms. Traditionally, DBS targets the subthalamic nucleus. One of these new targets is the pedunculopontine nucleus (PPN), which could specifically address posture and balance, symptoms that traditionally do not respond to DBS. As of this conversation, 100 patients in the world have undergone this procedure, and many centers are investigating the safety and efficacy of stimulating these areas of the brain. 

Additionally, there’s reasonable evidence that the earlier you intervene with DBS with Parkinson’s the more effective it can be. There is now interest in not paying the opportunity costs of being ill for so long and introducing DBS earlier in the course of the illness with the view of keeping people functioning at a higher level. We suspect that these benefits will be long lasting. We have data for 5 years and 10 years, but we suspect these benefits will continue over the long term. <emphasis mine>

Share this post


Link to post
Share on other sites

I just had this conversation with my mds. I've been on sinemet for two years and it works wonders but I'm needing 500 some days 550mg to maintain good functionality. He cites studies where once you get above 600 mg a day the risk of dyskinesia grows rapidly. I thought I was a long way off from considering dbs but based on early research returns I'm interested. That being said he didn't recommend it at this point. Instead I get to try requip! Hooray?

  • Like 1

Share this post


Link to post
Share on other sites

DBS timing and whether to have it at all is so highly complex that I left the calls up to my physicians.  They had impressed me and ones father had died due to PD complications and had always seemed to take a special interest in how I was doing.  My actual surgeon had performed the operation successfully hundreds of times.  I wasn't getting any better, only worse.  In the end, before my surgery, taking the advice of experts I  trusted was hardly a decision at all.  It was a given.

Edited by Rogerstar1

Share this post


Link to post
Share on other sites

Percentage wise, how much of a boost of improvement did u guys have with DBS?

Edited by Bills

Share this post


Link to post
Share on other sites

Sinemet tablets reduced from 17 - 20 down to 3 or 4, sometimes 5 for sleep purposes.  Generally improved by 80% to 85%.

Edited by Rogerstar1

Share this post


Link to post
Share on other sites

I thank Barrack Obama for insuring that not just the upper class will be benefitting from this new paradigm. Science assures there will be advancements -- their equal distribution will be the fight. I await Patriotm 's take on this. Patriotm...?

I think that you are smarter than that Roger. You know full well that Obamacare has done almost nothing to decrease the number of uninsured in this country. Obamacare has caused millions of Americans with good insurance to have their insurance cancelled, forcing them onto Obamacare (or to become uninsured). The corrupt government then counts these people as if they were uninsured and had been given insurance by Obamacare. The TRUTH is that the only significant decrease in the uninsured is due to the expansion of Medicaid. Good luck finding a competent surgeon that will do DBS for Medicaid patients!

 

I have a family member that manages a large practice of doctors (surgeons, specialists, etc). They don't take Medicaid and they don't take many of the Obamacare plans.

 

Millions of Americans have already lost their insurance because of Barrack Hussein Obama. Millions more are about to lose their insurance. Barrack and the socialists (both democrat and republican) are a disgrace and have only hurt our healthcare system and our country.

 

Next up - rationing of care! If you think that old people with PD are going to get an expensive DBS surgery under socialized healthcare, think again. Take an aspirin and wait to die - that's the prescription under Obamacare once it's fully implemented.

  • Like 2

Share this post


Link to post
Share on other sites

You know full well that Obamacare has done almost nothing to decrease the number of uninsured in this country. Good luck finding a competent surgeon that will do DBS for Medicaid patients!

 

I have a family member that manages a large practice of doctors (surgeons, specialists, etc). They don't take Medicaid and they don't take many of the Obamacare plans.

 

Next up - rationing of care! If you think that old people with PD are going to get an expensive DBS surgery under socialized healthcare, think again.

Being IN the health insurance business, I take issue with some of this, Patriot. The ACA has done one VERY positive thing....health insurance is now guaranteed issue and you can't be turned down for a pre-existing condition. 3 years ago I was having a difficult time getting anyone over the age of 45 issued, cos it seems EVERYONE has SOMETHING wrong with them. They were either flat out denied, or the existing condition was denied.

 

True that many practices are no longer taking Medicare patients, and some do not accept ACA policyholders.

 

"Rationing of care"...yes, I do somewhat agree with this, and things like DBS may not be covered as readily.

Share this post


Link to post
Share on other sites

Respectfully Patriotm - Obamacare subsidizes and improves coverage for all. NO MORE TURN DOWNS FOR PRE EXISTING CONDITIONS which had rendered PWP all but uninsurable, NO MORE allowing insurance companies  to deny claims. TtHE TAXPAYER PAID ONE WAY OR ANOTHER.  BEFORE the ACA a person went  to the emergency room and the taxpayer paid the entire bill!  There are certainly flaws in the ACA, starting with the fact that it didn't eliminate the health insurance for profit industry,  middlemen taking a cut for managing cadres of physicians, but it has provided health coverage to millions who wouldn't have had it otherwise. Increasing the currently low number  practicing physicians needs come to pass soon - removing the monopoly they currently enjoy.

 
When all is said and done the ACA will represent Medicare in a single (gov't) payer system. It is heading in that direction.  When we look at National Healthcare in ten/fifteen years, it will be different and better. Point being - there will be National Healthcare  -  that writing is on the wall. 
 
What would you propose for insuring the masses  and assuring that PWP can have access to DBS surgery (in 75 words or less) if you were the President, PatriotM?  Republican naysayers are bereft of any proposals at all. 
Edited by Rogerstar1

Share this post


Link to post
Share on other sites

I went almost a year without insurance due to being jobless... I come from a very poor family and parents who also have health issues... Now thanks to Obama care I have insurance and I'm so grateful for it.. Idk if that'd going to upset people.

  • Like 1

Share this post


Link to post
Share on other sites

Good for you, Bills. And don't worry what others on an internet forum think. No one here is an expert on healthcare in America.

  • Like 1

Share this post


Link to post
Share on other sites

Doctor's are now looking to use DBS sooner rather than later for young patients that have good dopamine response (sinemet works well).  From the MJFF site:

 

MJFF: How do you expect DBS to be used moving forward?

 

AL: We are now moving forward with research into DBS treatments that might begin to treat non-motor symptoms of the disease. Traditionally, these symptoms are unresponsive to surgery. But there are different circuits in the brain, and each has its own unique job to do. Some are for tremor, some deal with rigidity, for example. Others regulate cognition and depression. We now believe that if we focus on specific circuits, we can isolate treatment for more specific symptoms. It’s like if you took your car in to get repaired — just because you need a new muffler doesn’t mean you also need to fix the engine. And even if you did, you wouldn’t expect the same procedure to fix both parts of the car. 

 

We are now analyzing areas of the brain which are involved in generating non-motor symptoms. Traditionally, DBS targets the subthalamic nucleus. One of these new targets is the pedunculopontine nucleus (PPN), which could specifically address posture and balance, symptoms that traditionally do not respond to DBS. As of this conversation, 100 patients in the world have undergone this procedure, and many centers are investigating the safety and efficacy of stimulating these areas of the brain. 

 

Additionally, there’s reasonable evidence that the earlier you intervene with DBS with Parkinson’s the more effective it can be. There is now interest in not paying the opportunity costs of being ill for so long and introducing DBS earlier in the course of the illness with the view of keeping people functioning at a higher level. We suspect that these benefits will be long lasting. We have data for 5 years and 10 years, but we suspect these benefits will continue over the long term. <emphasis mine>

 

Thank you for posting this information.  It's very encouraging, isn't it.

  • Like 1

Share this post


Link to post
Share on other sites

What would you propose for insuring the masses and assuring that PWP can have access to DBS surgery (in 75 words or less) if you were the President, PatriotM? Republican naysayers are bereft of any proposals at all.

Republicans are as big of idiots as the dems - of that there can be no doubt. In fact, to believe that there are actually two different parties is nothing more than folly. The two party system is nothing more than an invention by the globalists (bankers) to convince people that they have a choice.

 

Anyway, this is how I would fix healthcare and everything else. I would take a meat cleaver to most federal programs and eliminate many departments/agencies altogether, including: commerce; education; EPA; OSHA; BATFE; NSA; health, etc, etc, etc. I would then DRASTICALLY cut federal and state regulation and allow the economy to become truly a market economy. That would fix just about everything.

Share this post


Link to post
Share on other sites

Republicans are as big of idiots as the dems - of that there can be no doubt. In fact, to believe that there are actually two different parties is nothing more than folly. The two party system is nothing more than an invention by the globalists (bankers) to convince people that they have a choice.

 

Anyway, this is how I would fix healthcare and everything else. I would take a meat cleaver to most federal programs and eliminate many departments/agencies altogether, including: commerce; education; EPA; OSHA; BATFE; NSA; health, etc, etc, etc. I would then DRASTICALLY cut federal and state regulation and allow the economy to become truly a market economy. That would fix just about everything.

 

Love it!   Don'f forget the IRS, CDC, FDA (reform these last two rather than eliminate).

  • Like 1

Share this post


Link to post
Share on other sites

You realize PatriotM, you've cut basically maybe 10% of the federal budget if you got rid of everything except for Military, Social Security, Medicare, other health and welfare programs and Interest on the debt.  But don't let reality get in your way.  And I'm sure without regulation, industries will be good.  I mean look how well reduction in regulation did for the banking industry in 2008.  It's not as if we don't need to watch out for companies that spend little to know  money on safety equipment or cut corners and cause disasters (BP in the Gulf, Coal mining companies in West Virginia and Kentucky),  we've never had water or air quality issues in this country when companies were under lax scrutiny (acid rain), nor did they take advantage of their workers.  And who needs research, it's not as if the bans on stem cell research might have delayed a cure or anything.  http://www.science20.com/genetic_literacy_project/europe_reinvestigates_fetal_cell_transplants_for_parkinsons_disease-146414

Edited by young_dad
  • Like 1

Share this post


Link to post
Share on other sites

I asked my local MDS what he thinks will be happening with this disease in 10 years (being that I'm recently diagnosed) I was particularly interested in what he thought medicines would look like in a decade. He said that DBS is the more exciting direction that treatment is headed,...that it will be much more common, accepted, and helpful. Even for those in earlier stages of PD. As they do more and more of them, and more research is gathered from each surgery performed, that it will continue to get much better and more targeted to the individual needs. Of course, there is that whole COST issue...

 

Pretty interesting, but still a bit scary to imagine having it done. Thanks all you "pioneers" who have gone before me

 

 

I really hate pessimism or to be cynical, but I don't have very much faith in the med profession and research. Almost 30 years ago when my father was diagnosed with PD the med professionals were saying  in 10 or 15 years we'd have all sorts of new stuff,. i was diagnosed 15 years later (ago)  and all that time NOTHING!

 

Altho  I've heard of the good results for some with DBS, there is also the constant adjustments many people need etc. Even tho I've told him I have enough on my plate, the last time I saw him he told me he wants me to meet the "team" anyway. It's obvious to me that I'm looked at as just another guinea pig..

 

And in this capitalist society I'd love to know just how much money has been funnelled into "research'  for  PD. Any other business (and that's what it really is) that used so much money with so little success would be fired. Where has all that money gone,, aside from machines and payroll.

 

When it does happen I wouldn't be surprised if the discovery is very low  tech and inexpensive, which would be of no interest to Big Pharma.

 

It's very possible that Rick Simpson's MM  oil will be this discovery.

 

I honestly think that MM is the best hope for PD and people should smell the coffee and get with it,  or you'll miss the boat.

Share this post


Link to post
Share on other sites

Say what you want but in my state the number of people that now have medical insurance has increased and the number of plans available has increased for the coming year from 10 to 13 to chose from in the next open enrollment. I have breast cancer and while I have insurance through my employer, I know other women that got their treatment for breast cancer because of the insurance they have through the Affordable Care Act. Truly a life saver for those women and makes all the difference for people with PD. My state is one where the Governor was bold and backed the Medicaid expansion. The hospitals and doctors worked hard to expand coverage to help more people. Their actions kept hospitals, especially in rural areas, open and serving communities throughout our state. 

Share this post


Link to post
Share on other sites

I agree Golden. I would put the Affordable Care Act up on the same level as the Civil Rights Amendment of 1964....... and down the road, I believe that history will agree!

  • Like 2

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×