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Topic Funding for a cure Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2011.09.06 10:31
I don't want to ruin Al's awesome post so I am writing this separate.

There is plenty of "funding" for a cure for PD. The problem is how that funding is used and what the research is all about. They only go so far with their research. You figure, and this is me talking, with all the money given to research for drugs and drug trials and finding a cure, surely more should have been done in the 25 years Al has been fighting this disease. The same drugs used 25 years ago are still be used today with the same hellacious side effects as they had years ago. With the same limitations in the amount the drug works.
Do you know that one of the main component in drugs like Mirapex and Requip is magnesium? A simple mineral that when taken in supplements can almost give you the same "healing" as these drugs. There is also a high content of sulfur in these drugs that in the body can cause PD symtoms to worsen.
Maybe it's just my fight, but, there are very few clinical trials for those under the age of 65 and older than 45. Yes there are YOPD studies, but here is what I don't see. I don't see the above mentioned age group studies done and why more and more have a "different" type of PD then what you would call the standard PD or PD+ diseases. I have seen over the last 4 years since getting into this disease an increased number of folks in this age group having the symptoms of PD+ diseases, yet not being able to pinpoint a definite one. the progression of that disease in these folks are well known on this board. Research it must get broader and more risk taking should be done. My guy would be willing to be a guinea pig for any new thing that comes along within reason. He wants an answer as to what will be next.

Even to this date we still have to sit here and go..is it the disease or is it the drugs.

After all these years you think we would have some kind of definitive answer as to what is going on. I feel they don't look into the depth of the disease. They look at the surface issues and really don't look into the complexity of what goes on. Heck, even most neuros don't even know or agree that there is pain associated with this disease. We as the caregivers time after time tell the docs what is part of this disease. How crazy is that? We don't even have a truly reliable medical community to oversee our loved ones.

If they found a cure for PD. If they found a drug that worked to take care of all the symptoms, it would cause economic collapse in the pharm and research world. All those researchers and drug company employees would be out of work. Companies would go into bankruptcy should we not need many drugs but one.They of course may find another disease to not find a cure for but then someone else would suffer.

As my guy says...forget about where it comes from or why it is there...find something that will let me live a "normal" life without the side effects that cause more harm than good. Help those with this disease continue on with as much normalcy as possible. For if there was something to aid in normalcy, maybe my guy could still be the chef he was instead of not being able to make chocolate chip cookies on his own anymore.
Even this new gene therapy doesn't go far enough 23 or 27%, whatever it is, just doesn't cut it with me....

Just my viewpoint..and i mean not to offend.....

By susger8 On 2011.09.07 14:18
Actually there is no sulfur in Requip. There is one sulfur atom in Mirapex, but it's not free sulfur (it's part of the molecule) so there is no reason to think it has a negative effect. There is no magnesium in either molecule; it may possibly be an excipient (an inert ingredient that is part of the tablet) but is not an active ingredient or part of an active ingredient.

I agree with you that much more research could be done on PD and that there is much more funding for highly-publicized diseases. I also agree that science does not know nearly as much about neurological diseases, including PD, compared with, say, high blood pressure or diabetes. As I've mentioned before, this is a really difficult area of research.

I have to disagree that drug companies are "covering up" a cure for PD. I work for a drug company and I have worked on projects for PD. My company would by no means collapse or go bankrupt if a cure were discovered. There are plenty of other diseases and other medications. PD medications bring in only a very small proportion of the overall income of any drug company or the pharma industry.

I know many people have an image of pharma researchers as a bunch of greedy money-grubbers. But we really are motivated by the idea of helping people. We would be delighted to cure PD. To bring a product to market that saves people's lives is a dream for someone in this field. You may discount my opinion as biased, but I am sincere about this, and not because my dad has PD.

Sue

By lurkingforacure On 2011.09.07 15:26
Sadly, I don't think we will ever have a cure as long as pharma et al. keep seeking the "one pill cures all PD" pill. The more I learn, the more I see how PD, MS, fibromyalgia, CFS, ALS, most of the chronic ills, are strongly correlated to inflammation, which every person on the planet reacts to differently. Some can handle huge amounts of stress, others cannot, and there are different types of stress on top of that. Some people make huge amounts of cortisol in repsonse to the smallest stressor, while others don't. Some of us can recover and balance back out quickly after we have experienced a stressful event, others take days, months, years, and some never get over the stress. We are all so unique and different that modern medicine simply cannot fix us with a pill that will work for all. Rather, we need to know what causes something, and then give the body what it needs to fix it by itself. That is the premise of Dr. Wahls' book and her story, she had MS and was in a wheelchair before she realized, as a doctor herself, that medicine had nothing to offer her and that she had the tools within her own DNA to heal herself, provided she gave her body what it needed in terms of food. She did, and is now back at work as a doctor and riding her bike, horseback riding, she does pretty much what she wants. If, however, she quits eating the good foods, she can feel the MS creeping back in. It took her over a year and a half to get out of the wheelchair with her diet and exercise program, but she did.

I'm not saying this is all we need for PD. We have no clinical trials on diet whatsoever for any condition and Dr. Wahls has been working on trying to replicate her results in other MS patients. Not surprisingly, no pharmaceutical company, nor the government, has been willing to fund her work. So far. I hope that as word gets out that may change. In the meantime, I'm working on our own trial at our house to see if my husband feels better with Dr. Wahls' regime. It's hard, nine cups of veggies a day is really hard. You can do it for a few days, but after that, whew, it's a lot of work to prepare it and almost as much work to eat it! But we'll see. I know when we tried to do it before, my husband did feel better. But he fell off the veggie wagon and that was that. This time, I'm hoping he'll feel better and the improvement in health will motivate him to stick with it.

By karolinakitty On 2011.09.07 15:31
Oops.. I did write that wrong Sue, sorry about that... What i should have said was that Magnesium, given as a supplement, to patients with RLS, @ 250mg/day took them off the Requip/Mirapex of 8mg/day. Now guys like my hubby who can only take Requip and not Sinemet, may be able to substitute magnesium for the Requip/Mirapex. Now first you have to know how much magnesium your body can handle. There are charts and a magnesium calculator on line to give you what your bodies limitation is for magnesium as well as figuring out if you are getting it elsewhere. For my guy he can go up to 2000mg/day. He's a large man and taking into account what is already there he can add 1500mg/day to not over do it. which means if 250mg= 8 mg of Requip then if we add 500mg/day we might be able to dump the Requip. Now I am not suggesting that anybody do this. This is something we have looked into because we don't like the side effects and we don't like the fact that only one insurer in Medicare part D,covers it for those on full disability. It is expensive on it's own and when we get in the gap it really hurts us financially.

On the sulfur, I asked my friends daughter who works for a Pharm company about it. I asked her to give me any information on sulfur in the Requip, because my guy got a very high sulfur reading from the iridologist and that we weren't sure where it came from. She explained to me about free sulfurs and had told me that there were free sulfurs in Requip and that it could have been the cause of the high sulfur reading since he has been on it in larger quantities. If she informed me wrong, I don't know, I had to go with someone who i thought would be informed as she has her degree in BioChemistry from WVU.
I didn't mean to offend, if I did, but again it is just my viewpoint....thanx for giving yours and correcting me on the magnesium issue..sometimes when I write I write in a mood..:( but sometimes that can be good...:)

By karolinakitty On 2011.09.07 15:54
lurking.. we too are doing our own experiments with food, herbs and minerals. As well as doing all those things for the dementia, we have added others for the PD. He wants to so badly get off this Requip and in the last year I have researched my fingers off and the magnesium was the only thing to date that we can try.

One thing we have to remember is not to overwork the body. With PD things are slowed down to begin with. For example stomach digestion. I do believe you were the one that brought up the H-Pylori...well we found that too much can cause trouble too and backed down on that supplement and are holding our own. A slow change is better than a rapid enforcement, especially where the stomach is concerned.

We have tried things on and off, we up amounts, lower amounts and again I say this may not be for everybody. We finally have a doc(really an LPN) who follows us closely and brings up any concerns to us. Since i started my facebook page she follows it regularly and asks questions privately if she has any concerns. So far we have been up front with her on all ends and she isn't that kind that is afraid of adding things if it really helps the patient. She too agrees with us that there has to be something out there in some combination that would help those with PD live a fuller life.

Our next step is the GABA and since the one I found does have the amino acids that cross the blood barrier we are going to give it a try. With all the nodding off during the day, yet the non-sleeping at night, I think this would be great. We also introduced kidney/liver supplements and find they have worked well...again we had to find his limit and his balance of what HIS body needed.
Like Dr. Wahls, getting out of that wheelchair worked for the regiment she introduced. I think, or at least in my mind, I think there are enough ingredients naturally, in foods, herbs and minerals that are overlooked by the medical community. There are so many snake oil salesmen out there that I don't blame them but you need to find the true folks who really know and have studied these things to get to the bottom of it.

One pill is not the answer I agree, but, if we could just find a method without hellacious side effects we all would be better. Even during this time I have added my own supplements and watching my own food/drink activity to not only aid me as a caregiver but as someone going through menopause at the same time....I don't want to take common relief for my symptoms, i am not one to get into any drug regime..i very seldom even take anything for a headache..so changing my food habits and drinking habits have done me well. It was suggested to me from someone that I should add Bcomplex to my regiment...well i got that kind that didn't promote energy and STILL I was flying high..my body happens to be different and I assume I was adding more than i needed ..so i cut it out...I'm slowly getting back to "normal".

By Michele On 2011.09.07 16:02
KK, I agree with you 100% about the lack of results from the "funding." We just got yet two more requests for donations for PD research. My immediate reaction was "no." For all the money poured into research, there are no real improvements in symptoms or care. except for DBS, which is not a cure all and not appropriate for all PD sufferers. Doctors are not really even recognizing the "secondary" symptoms of PD - all the life affecting symptoms that are not "movement disorders." For these, we have to go to a variety of specialists in addition to the neurologist/movement disorder specialist. I'm glad that you brought up this topic even if it just allowed me to vent.

By karolinakitty On 2011.09.07 16:26
I'll vent with you Michele...

It kills me that they send requests for donations to PD patients thinking that they might really have the money to give. Most from all I've read are retirement age, living on social security and medicare, some are vets living on their measly pensions, and they want them to give just because they have PD.. now they are probably buying mailing lists from docs as it is legal and all to give the name and address, just not med history or they get names from those who inquire about booklets and such. They almost make you feel guilty if you don't sned money, after all we are dealing with the disease and they just might find a cure, as for me ..like I said before I would rather give to something locally out of my own hospital for research than all these giant ones.....

By LOHENGR1N On 2011.09.07 19:54
Michele, Even DBS doesn't halt the underlying disease process. Parkinson's Disease continues on it's merry way killing remaining dopamine cells in our brains. DBS's answer? Turn up the voltage! (to put it crudely, I reserve the right I'm a patient).

By Michele On 2011.09.07 20:16
KK, yes, to continue our venting- it is amazing that PD foundations continually send requests for donations to those WITH PD. Any extra money we have goes to care for our loved ones. What's the answer? Do we stop supporting research? By the way, as you know, even with high profile PD sufferers such as MJF and Mohammad Ali and the last Pope, the general public knows nothing about PD (except those with it shake - most do, mine doesn't) and there is more awareness (and fear of getting) Alzeihimers than PD. So frustrating. I have been sending money to PD research regularly but now I'm not so sure I want to continue.

By Michele On 2011.09.07 20:22
LO, You can put it crudely, it's true. Turn up the voltage is apt. Now physicians are using DBS for OCD and depression. Anything else? It's glitzy and high tech but as you say, it doesn't stop the progression of the disease and as far as I know, doesn't last indefinitely. I do have to say, though, that in a support group I attended, four of twenty five in the room had it done and say they would do it again in a heartbeat because of the relief they received.

By karolinakitty On 2011.09.07 22:48
DBS is also used for those with Torettes(spelling). We had a couple guys come down fishing when we first moved here and the one guy had the DBS for his torettes. That was 4-5 years ago. How he is now I am not sure but he said it worked wonders for him. It stopped the tics and the language outbursts....

By susger8 On 2011.09.08 10:29
DBS is also used for difficult cases of essential tremor. I have that, but it is not much of a problem to me so far. Fortunately.

Lurking, medical research is starting to move away from treatments aimed at everyone with a certain condition, and toward treatments that are aimed at subsets of patients that have a certain genetic or metabolic makeup. We are especially seeing this in cancer research, but it is a trend across many disease areas. The ability to do gene testing may make it possible to target treatments very specifically, increasing the chances that the treatment will work and decreasing the possible side effects. It seems very likely that early-onset PD patients have a different gene mutation from late-onset patients -- I would not be surprised to see treatments become much more specific in the future. Not in the immediate future, sadly.

Sue

By susger8 On 2011.09.08 10:48
Here's a link to the chemical structure of Requip. It contains carbon, hydrogen, nitrogen, and oxygen. It is a salt, but it's a hydrochloride, not a sulfate. Your friend might have been under the impression that it was a sulfate salt.

http://us.gsk.com/products/assets/us_requip.pdf

I am not a big fan of Requip or Mirapex, and I was pretty glad to get my dad off Requip. I am quite sure it caused his lower legs to swell, and he had some obsessive behavior that went away when we discontinued Requip. Fortunately, his obsessions were not nearly as destructive as some people have reported here.

Sue

By packerman On 2011.09.08 10:31
DBS is also used for Epilepsy and Depression (as a last resort, if no other treatment has worked in the past).

the amount of voltage & frequency are regulated by our Movement Disorder Specialist. there are safety parameters set which my hubby can't change.


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