Helping Those Who Care for Parkinson's Patients
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I just learned that a new clinical trial is beginning for duodopa. It is an intestinal gel of levodopa/carbidopa that is delivered continuously through a tube in the gut, the goal is to eliminate the off/on of pills and some other PD symptoms...they are looking for advanced patients who are not responding well to traditional meds. This is not a double blind trial, either, so all trial participants will know they are receiving the real thing. (ie, no sham surgeries). Duodopa has been in use for a long time in Europe and is just now being considered for use in the US (probably because the patents on several PD drugs are fixing to expire, but that's my cynicism talking....). Anyway, go to pdtrials.org and you should see it, or google duodopa trials and it should come up, if you are interested. They would probably not let us in, since we are only 3 years into this from dx, but I wanted to share this anyway. |
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We talked to our Dr. on this the closet study for us is to far away. But our Dr. says he may have access in about a year So we are waitng. Thanks for the info |
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| I spoke to one of the research centers about this. the trial will last for one year. I asked if after the trial my husband could continue to receive the medicine this way and the doctor said no. I would not put my husband thru the surgery to have the device inserted only to have it removed a year later. Further, he would have to begin all of his drugs all over again. |
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Dear "lurking" - I have done extensive research on PD too. Went to a local PD support group - for the folks that have PD - not the caregivers. There were only about 12 people there. I asked each one if they had had prior surgeries before being diagnosed with PD. Every single one of them had. We have a B&B in our home. We had a guest, female, that had been coming for years. She stayed with us at least once a month. One day, sitting on the porch, she simply fell out of a chair. Then her speech was affected the next visit. She was initially diagnosed with PD but later they decided it was ALS (even worse). She had hip surgery at the same time my husband had cataract surgery. Within three months of these surgeries they were both diagnosed with PD. I believe (in my ignorance most likely) that this is some kind of infection. Viral - bacterial - prion. Have you any thoughts or found research relating to this idea? What do you think? |
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| The research does not point to surgery as being a cause for PD. In general we are dealing with an older population who is more likely to be having surgery for something or another. By the time PD is diagnosed 85% of the dopamine cells are already dead so the process has been developing for a number of years. Anesthesia in an older population does result in more confusion which can last for a number of weeks or months. This may be just enough stress to make the PD symptoms apparent. |
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I looked up this duodopa, what I gather from reading about it is; This system may very well be a way to go when the P.D. has progressed to a point of taking medicine orally is seriously compromised. Or for those Who have motor fluctuations which respond to (are controlled by) levadopa therapy and have progressed to a point of severe "on-off" effects with wearing off or short peaks of maximum benefits between dosages and have exhausted all available drug therapy's. However, it is still a surgical procedure (the inserting of the tube), with the risks of infection, shifting, blockages and the lot that goes with it. (Like a feeding tube.) From what I read they're not proposing it's use as a system of alternative delivery instead of oral consumption. (not a I'll have it installed and only have to fill up in the morning and be good all day convenience.). It is interesting and bears watching. On the supposition of surgery /viral, bacterial. As Ann said 85% of the cells producing dopamine are already dead by time of diagnosis so the process as been developing for a number of years. Not only is the stress enough to manifest symptoms probably but P.Der's don't seem to do well handling anesthesia which may well bring the Parkinson's symptoms to the forefront. Viral is a horse of a different color. The film Awakenings is about a group of people who years before developed encephalitis and were after left in a catatonic state. In 1969 the use of L-Dopa improved the condition they were in and thus it was one of the first major strides in treating disorders like Parkinson's Disease. Take care, best of luck and hang in there. |
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| My thought on the possible development of PD. One has a gene that may make them suseptible. It can then be triggered by a variety of things - one being chemical exposure and another viral exposure. Several people in later life developed PD and it was discovered that they had had the epidemic flu in 1917. (Viral). Surgeons and anestheologists have an increased incidence of PD (Chemical). My husband was stationed in Florida during the Air Force years (50s and 60s). Every evening the planes would spray DDT over the housing units to control the mosquitos. 30 yrs later he developed PD and his first wife developed lung cancer although she had never smoked. We have two friends locally who have PD. Both are surgeons. One remembers being a little boy in New Orleans in the 50s and he and his friends would ride their bikes behind the truck spraying DDT for mosquitos as a way to keep cool. It is a very complex disease and we really don't know what causes some people to develop it and other not. |
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Despite all my research, and like most of you, it is extensive, I really can't say I have any firm opinion of what causes PD. Our neuro told us if we all lived long enough, we would all get it. My grandmother lived to be 30 days shy of 100 and except for the last year of her life, she lived alone, without help, and took care of all her own everything. To do that at 98 is pretty good, and I dont' remember her having any shakes or mental issues, even at the end. My other grammy lived to be 96, and was independent until 95, so I don't know if the neuro is right about us all getting it at some point or another.. If you really want to get technical, go to www.neurotalk.org and the parkinson's forum there. It is amazing the theories and information that are discussed there. Debi Hood, Fox Foundations' previous executive director, has recently been joining the discussions. There are researchers and scientists who lurk there as well. It is very inspiring. I guess my pet theory right now is that inflammation gets things going. I know that as we age, the blood brain barrier gets leakier and leakier, letting in more and more things that shouldn't get in. I also know that when we are born, until we are many years old, that barrier is like a sieve, everything just flows in and out until the barrier is gradually tightened pretty well, I think by age five. So we are very vulnerable from birth (and of course in the womb) to about age five, and then again as we age. Who knows what gets in during those times. Additionally, stress makes a big difference, you can google the organic manifestations of stress and none of them are good! I have often wondered if vaccines are setting the stage for PD or other brain diseases, because those are thrust upon us when our brains are naked, without the full protection of the blood brain barrier, and contain so many horrible things like aluminum (a whole topic in and of itself, what all is in those vaccines!), and in such high doses. Poor kids now get something like 36 doses of vaccines before they are two! And the list of shots they want parents to give their kids only gets longer and longer. All of those chemicals, in those tiny bodies, and no complete protection for that vulnerable brain. How can there not be any deleterious effect when you dump all of those chemicals into the bloodstream? Maybe not right away, but years, decades, down the road? That being said, we try to do anything we can to tighten that blood brain barrier, and help keep inflammation down (or better, reduce it!). The following was just posted in a neurotalk thread, the link contains things we can all take to help our brain (whether or not you have PD)...I have never heard of some of these things but am going to check them out. For those interested in being a white rat, here's the link: http://neuroprotectivelifestyle.com/...-live-without/ My husband also takes low dose naltrexone, you can google this as well as reading about it on neurotalk. Some PDers say it has really slowed their progression, I can't confirm that it has done that for us, but what it seems to help my husband with is sleep. And when he sleeps, guess what, I sleep too! It's cheap as well, less than a buck a day. Anyway, sorry for the long post. I really do think they are getting close to figuring PD out, mainly because of the incredible advances made in biological engineering that allow them to literally see things like signals being sent from one neuron to the next, and the chemical changes that occur when that happens. It really is incredible. Hope this is helpful. |
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Well I know manganese poisoning (Technically the term is manganese intoxication) causes a form of Parkinson's (or I believe the term is Parkinson's syndrome.......this being as Parkinson's disease is idiopathic or of unknown cause technically). I was the first in the country to have Anti-Parkinson's drugs covered by Workman's Comp. insurance. Found in Massachusetts Compensation Court to have contracted Parkinson's as a result of my profession ... Welding. Subsequently the State Court of Georgia in a jury trial against welding rod manufacturers also came to the same conclusion. Why all welders don't contract this is theorized, that a gene might predispose one exposed to manganese to contract Parkinson's. Hopefully as they puzzle it out they will knowing the causes be able to figure out a way to better treat and even cure this disease. Take care, best of luck and hang in there. |
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| The blood brain barrier is in effect at the time of birth. I did pediatric oncology and we had to give intrathecal chemo (directly into the spine) in small children with leukemia because the blood brain barrier prevented chemo from getting into the CNS. |
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Carol ("Annwood"), This is the first time I've heard of pesticides being connected to PD. I've never done any research into the causes of it. My dad served in the Air Force in the late '40s and early '50s. I am wondering if this might help in getting his PD to be recognized as service-connected for the purpose of obtaining benefits and treatment. Is this realistic, do you think? Can you direct me to any other resources I should be aware of? Thank you for giving me a heads-up and thanks for any advice you can provide. |
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| Tara (and all): my PD husband was in Vietnam in the 60's. There is a whole group of Vietnam vets with PD. They are currently introducing legislation showing the effects of Agent Orange on the vets and how it strongly suggests that it caused their PD. I realize, Anne, that those that got PD probably had a gene that rendered them susceptable to PD and then the Agent Orange sealed the deal so to speak. I don't have the information here about the group who are working on this, but I can get that from my hubby and forward it along to you through this forum. there are many many vets with PD from the Vietnam era and probably before that had huge exposure to Agent Orange. My hubby was a ground pounder in Vietnam and was covered with the stuff. It was used to exfoliate so they could see the enemy. Unfortunately, the enemy was also Agent Orange. |
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I think it's fairly well established that PD has a higher incidence in farming regions, presumably from pesticides and other agricultural chemicals. My father spent his young years on a farm. and his working career as an engineer where he was exposed to metal-working chemicals (including welding). I believe that these chemicals cause genetic mutations that lead to PD. I spent many years working in open labs with organic chemicals that are now only used under a fume hood. I don't have PD, but I do have essential tremor. I'm sure that's where it came from. |
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| I think it would be years, if ever, before the military would recognize PD as anything they were responsible for causing. I am somewhat jaded on that. I do believe that chemical may be one of the factors in this disease. I mixed and administered chemotherapy for 15 yrs before they decided it was too dangerous and now everything is prepared under a flow hood in the pharmacy. So far I don't have anything but it would be interesting to know if others do. |
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Annwood: I understand your scepticism! And, I agree. But that doesn't mean we have given up. In a way, this has turned in to one of my husband's crusades and it good for him to pursue. Makes him feel that he is doing something for himself as well as others. Here is the information I promised: Alan Oates or Steve Fiscus are heading up this group. Their emails are: Alaln Oates --- theoldvet@yahoo.com and Steve Fiscus --- swfiscus@msn.com Contact either one of them to get information about PD and Agent Orange. They are even helping vets apply for benefits. |