This web site, at one time not so long ago was a source of very intelligent conversation and information. Oh it had its share of people pushing magic cures but most of the people kept a reasonable level of sanity .
Every one here knows or should know that there is very high value in exercise in alleviating some PD symptoms. But there are one or two that claim every one can throw away his meds just by fast walking.
Proponents of various substances and devices, coconut oils to vitamins, magnetic fields to red lights are adamant that they have a cure. They do not.
A doctor in India is curing the world of PD just by a taking a vitamin. It does not seem to work for every one but maybe that is their fault.
A surgeon in Mexico is doing that also , his way. expensive
People who believe that some herb is better that a concentrated manufactured medication. Well it would be nice if it was so it must be true
People who believe that "BIG PHARMA " is a conspiracy to keep them sick
and the worlds Neurologist are in their pocket.
Here ,a person who puts everything from soup to nuts into a blender and says it stopped the PD , well except at night.
A person who believes that harboring certain attitudes leaves you open to develop PD and is developing quite a following despite Park Bear.
All the while there is a women desperate to try to save her father or husband . A daughter who will try anything to help her mother and is exhausted.
The inmates have taken over the Asylum. The idiots are at the wall. All seems lost
God help us
Written by
GymBag
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Gymbag, I find it comforting to read back on the posts from a couple years ago or so. There's a lot of heartfelt honest sharing about what it means to live with PD and a lot of rallying around each other as we deal with the absolute reality of it. No hogwash about being cured if we would just stop being stressed or how we are condemning ourselves to the progression because we are not taking the right milligrams of a vitamin. When did magic become so important? Things come and go, ebb and flow so perhaps down the road.....
It's a mixed bag. I have quite quickly filtered the contributions of other members and have my own list of the sane and rational. I understand the fantasists. It's a shit condition and so tempting to snatch at any way out. To be fair I find it almost as hard to filter the rational scientific stuff. There is a lot happening in PD, which gives me great hope for my future, but is fairly confusing to be caught up in the middle of.
What about the ones who's loved one is in the final stages . How susceptible are they to grasp at this nonsense. Posting advise and telling someone to stop their meds and follow an unproven regimen is costing desperate caregivers money and could be deadly.
People with no medical education are giving very bad medical advise.
I agree that some people go too far making blanket statements like, "This will stop progression" rather than, "I have seen some improvement for myself and it might be worth looking into."
I was discouraged from taking meds because my neuro (UK trained and based) said
"these meds will not heal you and will not slow down your progression or deterioration, It will only hide your symptoms for a few hours and in addition you are likely to get some awful side effects. But in a real absolute sense you will only get worse until the highest dose of meds can't help you anymore. "
There were no tests done on me to check if any abnormal levels of substances/chemicals exist in me, so i can at least stop something that may be a source or making it worse (if it exists)
That was a slow death sentence to me and made severely depressed for several months. But when i recovered from this depressions, i did lots research and started some regimen 75% of which i found on this site. And contrary to what the neuro says i was actually getting much much better (though substantial tremor still exist, i now have hope that with more research even this would be fixed)
Now I have hope
Hope my neurologist never gave me
I don't care how many years training these neuros have
I don't care how many research papers they have written
I don't care how many degrees or qualifications they have obtained
My treatment is a proof they got it very wrong and based on this treatment of me...
I DON'T TRUST THEM AND HAVE ABSOLUTELY NO RESPECT FOR THEM
If any of you also experience one of these no-hopers neuros and feel good tying yourself to them- thats your prerogative
Hi, what happens in here is nothing but the reflection of what is happening in the world, where there is pain there is always someone who, in good or bad faith, will try to indicate a road. it is up to us to use our capacity for discernment. Preventive censorship has never led to anything good (we would still believe that the sun turns around the earth). If you believe that a helmet with red light heals the PD, are we sure it's a fault of those who told you?
Hallelujah! I was not going to read this weeks newsletter because I’m tired of reading about all the things you mentioned. Thanks so much for a succinct posting.
It's perhaps not surprising that for a disease that has no cure, people are free to explore different solution or treatments. As there seems to be a strong placebo element at work with most, there are always positive stories to be had.
The scientific community is just as bad, and research teams appear to operate a scatter gun approach to potential drug therapies and treatment hoping something will stick. Progress seems random and a solution just around the next corner, or perhaps the corner after that.
Still, the freedom of expression is more important than some people sensitivity as long as does not get converted in trolling. It very important for our morale to read positive news even if some sounds fiction. I'm just using my filters. On the other hand the forum format sucks, pushing the old posts down to the bottom of the bag. Let's enjoy the life as long as we can and accept each other the way we are.
Sorry to see your frustration Jim. I understand that "cure" claims may create false hopes and costly treatments, however, if members posting them don't benefit from these claims financially, I assume they have good intentions even if misleading at times...
Also want to mention that when I was a teen my mother developed bleeding gastric ulcer and was hospitalized for a couple of weeks. Later, still she was not feeling well and took me outdoors to gather some herbs, dried them and was drinking as tea which helped her to heal (by the way my dear mother was maxillofacial surgeon at the city hospital and trusted pharmaceuticals but there were no proton pump inhibitors at that time). Also, when I was a child and had a ear infection, I was told to use "reflector" which was a shiny polished metal bowl with a blue light bulb in the center and I had to sit for about 15 min with my ear facing it as the blue light was doing its work and somehow my ear would stop hurting. May be it was a placebo effect but where we lived (it was not US) many families had those reflectors and used them for treating ear infections instead of antibiotics.
This case and few others that I've witnessed made me realize that our bodies have innate healing power if we provide right conditions. Unfortunately, in this age of advanced science we are so detached from nature that we seem to be losing knowledge of how to create right conditions for healing and since there is no cure for PD, available medications are not always effective, but placebo effect can be a very real factor in some cases, I think there is no harm in knowledge that people experiment with light buckets, magnetic fields, coconut oil, etc. as long as they are not promoting them for financial gain. I personally have not used those (yet!) but who knows if those treatments won't boost the body's own healing power and slow down the disease progression? If someone tries them, I would love to hear about their results taking into consideration that all of us have different genetic makeup and as the old saying goes "one man's cure can be another man's poison".
I was discouraged from taking meds because my neuro (UK trained and based) said
"these meds will not heal you and will not slow down your progression or deterioration, It will only hide your symptoms for a few hours and in addition you are likely to get some awful side effects. But in a real absolute sense you will only get worse until the highest dose of meds can't help you anymore. "
There were no tests done on me to check if any abnormal levels of substances/chemicals exist in me, so i can at least stop something that may be a source or making it worse (if it exists)
That was a slow death sentence to me and made severely depressed for several months. But when i recovered from this depressions, i did lots research and started some regimen 75% of which i found on this site. And contrary to what the neuro says i was actually getting much much better (though substantial tremor still exist, i now have hope that with more research even this would be fixed)
Now I have hope
Hope my neurologist never gave me
I don't care how many years training these neuros have
I don't care how many research papers they have written
I don't care how many degrees or qualifications they have obtained
My treatment is a proof they got it very wrong and based on this treatment of me
I DON'T TRUST THEM AND HAVE ABSOLUTELY NO RESPECT FOR THEM
If any of you also experience one of these no-hopers neuros and feel good tying yourself to them- thats your prerogative
I agree strongly with your recommendations to the point of never trusting any neurologist. I have found a wonderful one in Jacksonville, Florida who listens to my concerns and responds appropriately. PM me if you need any details.
GymBag, I do hope that this doesn’t mean you are saying goodbye to participate in this forum. I do see your point, and can understand the frustration. I don’t like to see anybody given false hope, either; however, it’s important for us all to remember, sometimes, that we, as human beings, having survival instincts, need to have some hope. Even though we are told PD is incurable, we grasp for some hope. Many of us, filter out the practical, useful ideas, and, perhaps, try some suggestions, as presented by “ Parkies”, and others, in this forum. That is fine. There is no doubt that exercise is beneficial, and good for Parkinson’s patients; however, the same type exercise is not good for all patients, because there are so many different symptoms, and ‘plateaus’ that PWP are at, in their journey. In the earlier stages, one can probably do many vigorous exercises. If one is in a later stage, range of motion exercises and very light exercise may be the best. One remedy for all is where some have a problem, reading some of the entry’s in this forum. What may work for one, will not work for another. It is the nature of the neuro-degenerative process that determines the progression, and ability or disability, of how a person can do things like walking, using hands, basic motor functioning etc. Because the rate of neuro-degeneration and it’s affects on a person are so varied, each person’s story is a little different. I like to compare that to snowflakes. Each snowflake is different. Discernment is the key for me, when I read advice given by others. Most of it is given, with good intentions, I believe. I also feel that the term Parkinson’s is misleading. I am of the opinion that probably Parkinson’s is actually a number of neuro-degenerative diseases rolled into one term. The reason I feel that way, is because of the many variations. There is early onset, five different stages, etc. Some people have a very mild form, that doesn’t seem to progress, and some of them can run, climb, do most exercises, and promote that as, maybe, being an answer to no further progression for other PWP. I am a PWP, who is currently in Stage 3, and what exercises I could do in Stage 1, I am unable to do now. I have modified all my exercises, as It has become more difficult for me. My autonomic system is involved now, and that makes everything more difficult. I have hope that the scientific community could come up with more ways to help find the sources and maybe, prevent, neuro-degeneration, before it starts. It would be great if there was a proven way to stop the progression. I do take supplements, exercise, take medicine, and am in a clinical study, so I am being aggressive in managing my approach to handling my journey with PD. I have found many interesting ideas and suggestions, along with awesome support, from others, who participate in this forum, so I hope, GymBag, you will stick with us, and filter out the good ‘stuff’ that might help you personally, and apply it to your needs, as I do. Wishing you the best!
Hi ddmagee. That is a very well thought-out response to GymBag. I agree with everything you have said.
May I offer my understanding of what we call Parkinson's disease? We are told that Pd is caused by a lack of Dopamine in the substantia nigra as a result of loss of dopamine producing cells. Would you agree with that statement?
If so, then would you agree that it is highly unlikely that the same glial cells in your substantia nigra have been damaged as have been damaged in mine. Not being a scientist I have assumed that each cell has a specific function, like dealing with movement or dealing with mood, etc. Therefore, if you have no cells damaged for dealing with mood then the result would be that your moods would still be in full control, but I have a loss of many cells dealing with mood and I am unable to control my moods. If you are still with me, I am saying that all Pd is not the same because the damaged cells in my body are not the same as the damaged cells in your brain. If I am correct then we are dealing with one 'condition' and not with a multitude of conditions. In that case, all we must look for is a way to get more GDNF produced in the brain to repair more of our damaged cells that produce dopamine.
Very interesting Mr. Pepper! Good explanation and no, that was not too simplistic. Many studies have proven the benefits of exercise, and, in particular, some vigorous exercise, as being beneficial for Parkinson's patients. The release of endorphins and mood elevating aspects of exercise, has been well chronicled in many annals of exercise physiology, and physiotherapy manuals.Before I was 'stricken' with PD, I exercised a lot and took courses in Personal Training, along with spending a few years, working out with a personal trainer, participating in contests, and working at a gym. So, you might say, I benefited a lot from exercise, and advocate safe, range of motion, exercises, for people dealing with serious, potentially, debilitating ailments, such as Parkinson's. I walk frequently, in spite of severe arthritis ( bone on bone- both knees ). The Orthopedic Doctor injects my knees with synolic knee joint fluid. I do not wish to have artificial knee joints. With that, and Sinemet, I am able to walk fairly well, most of the time. I am not coordinated enough, seemingly, to do fast walking, though. My balance is off, because I have Cerebellar Ataxia, due to an artery problem at the Cerebellar/pontine angle of the brain stem, that is inoperable. So, now you know all my neurological problems! For some, it may be one condition, they are dealing with. Others, like me, have several neurological problems. One thing I'm sure of, is that if I don't keep up with exercise, I get way too stiff and lethargic and uncoordinated, so my quality of life, and being able to be ambulatory, is good, especially considering that I have cogwheel rigidity in all four limbs, and have autonomic system involvement now, which includes slowed digestive problems, peripheral neuropathies, pharyngeal/laryngeal problems, and orthostatic hypotension. I would like to stop taking Sinemet, but then the symptoms of resting tremor, stiffness,rigidity etc. all come back in full force. Thanks for your insight!
Hi. I’ve got a knee problem and been given the synvisc injection, but it’s week 5 now and I’m not sure it’s done much. How long did yours take to work?
I’ve been unable to play tennis for months now and I’m going crazy!
Mine took a about 4 weeks or so to really work, I thought. I also took Bio-flex supplements, and did range of motion stretch exercises. I feel it has helped a lot.
It is a difficult thing to constantly have to filter information when one feels vulnerable . The thiamine constant info is one example - call me old fashioned. I personally take it and I feel better for it but I question it s placebo effect and cannot day it is useful until a scientific analysis is performed - I listen to dr OKUN he makes sense I try amost new and whacky ideas that is our journey
Hi GymBag. I have gone to great expense over the past five years to travel all over the English speaking world to physically show every Pd patient that what I am claiming does actually work. There are probably 60% of Pd patients who either are unable to walk fast, after starting for a very short time and slowly building it up, or are unwilling to do so. I did that at my own expense, but did get a lot of help from many others by giving us accommodation. Why would I do that if it does not work?
I believe very strongly that walking fast produces GDNF in the brain and by its very name we know that it repairs the damaged Glial cells and as a result we produce more dopamine and we get better. It does not CURE PD! but it keeps us fitter and better. If I stop the fast walking my Pd symptoms slowly get worse.
I am now 84. I have had Pd symptoms since 1963 and had I stuck to taking Sinemet I would not be here today.
If you think that BIG PHARMA is on our side, think again!
Don't forget, we are not all the same we are all different. Take strength from others!
John, I've defended you few times in the name of free speech when some people attacked you. But in order to be credible can you tell us what were your worst symptoms and when and what are your symptoms now? I want to understand how your PD went up to a maximum and then went down or eventually remained at a certain level by using FW.
I am able to control the tremors; choking; Writing; chest infections. I sleep a lot better than I did when diagnosed. I am no longer dependent on medication to deal with the constipation. I don't panic when food goes down the wrong way, and always have air in my lungs to exhale sharply to remove the food from my windpipe. The urination is more under control because my floor muscles are stronger and I can get to a toilet before letting go, although there is always evidence of leakage. If I write slowly I can read it. My wife is my memory for words. She does the smelling for me and I constantly keep my lungs clear of phlegm, but when I get an infection I make doubly sure that I remove all loose phlegm, without coughing, just exhaling fast and often. Not nice to listen to but necessary.
Fast walking has, obvious to me, repaired a great deal of the damaged Glial cells in my brain, which means I have a bigger supply of dopamine than I had when diagnosed. With more dopamine I have a lower level of symptoms.
Why am I sure that the walking repairs damaged brain cells? How else could there be an improvement in my movement symptoms? GDNF means Glial Derived Neurotrphic Factor. That name tells us that glial cells produce a growth factor that repairs or replaces damaged Glial cells (Neurotrophic means Nerve Repair or replacement).
I would love to be able to raise enough money to conduct a scientific study on what I have said above. Would you like to help me do that?
John, I noticed myself that walking , aerobic exercising, dancing, gardening and any activity that eliminate stress helps. Regarding your theory about GDNF being produced by FW I do not know what to say but I'm not rejecting it or believing it as long as I have no means to determine the truth.
Unfortunately I still work long hours and have not time for other activities but if I would be retired I would help you.
Thanks ion_ion. I have deduced that GDNF is the only possible reason for my improvement, based on the study carried out in Frenchay Hospital in Bristol, where 6 patients received regular infusions of artificial GDNF and they ALL GOT BETTER.
The name GDNF tells us that our glial cells produce the GDNF and the 'N' stands for neurotrophic, which means nerve repair or replacement. So our glial cells produce a protein that repairs or replaces those cells. When we get more glial cells we produce more dopamine and as a result have less symptoms.
Every cell in our body produces a growth factor, and GDNF is one of them, and unless we were able to repair the damage done to all our cells, within reason, we would not have survived as a species.
The fact that we know GDNF can make us better, then why do scientists not look for ways to persuade our bodies to produce more GDNF, rather than finding other ways to get artificial GDNF into the brain, which is expensive and dangerous. The answer to that seems quite obvious, it would not produce any income for the medical fraternity. Perhaps you can think of another reason.
What no mention of Beth Fisher!!! She was your favourite before you latched on to GDNF at Bristol (though i believe there was a failed US trial as well, hence why GDNF was pulled from further trials for so long.)
Beth Fisher spoke at the first World Parkinson's Congress in Washington in 2006. Since then I learned about GDNF and have therefor moved on, unlike others, and have tried to keep up to date with positive news.
The second test done in the USA failed, and if I am correct, they stated that the GDNF was toxic in the report on that study. How a natural protein, which is produced by the brain can be toxic, I would never know. Perhaps they did not want people with Pd to know that GDNF repairs the damaged brain cells, which its name suggests!
avoiding contact with friends and taking part in fewer social activities
neglecting hobbies and interests
having difficulties at home
The prostate grows naturally with age, usually without problems. In some men, the enlarged prostate compresses the urethra, making urination difficult and causing benign prostatic hyperplasia (BPH). BPH symptoms include: Urinating frequently, especially at night.
JP, you're a myth, I wish I had a tenth of your willfulness. IMO the foundation on which the FW is based is a probable one, i.e.coukld be " can the Function repair the Structure?". Or does forcing the use of an organ benefit its structure for example?
If this were true, it would be beyond the mere fact that the exercise does well.
Hi GeoCas. It is amazing how determination overcomes our readiness to give in to problems. We can ALL consciously force ourselves to do what our bodies appear to be reluctant to do. For instance: when we freeze, while trying to walk, we can CONSCIOUSLY relax, stand up straight and place all our weight onto one leg, thereby allowing the other leg to be consciously lifted off the ground and placed in front of us. There! We are now unfrozen and walking!
The control of the walking function has not been repaired it has been taken over by a part of the brain that has not been affected by our Pd.
I agree with you, this site has degenerated to the extent of being useless with so many people pushing their own agendas. However sincere, a fervent belief is not proof.
The anti-science , anti-expert, anti-doctor, anti-Pharma brigade are very vocal, and muddy the waters.
To those who have just discovered that all doctors are not perfect, and all Pharma companies are not perfect, I would say “Welcome to the real world”. The majority are decent human beings doing as good a job as they are able.
I'm not anti-doctors and I'm not pro-doctors. Some of them are good but some are really idiots. I know this from my own experience. I saw five motion disorders specialists. Most of them almost trying to force you to take c/l, amandatine etc. One actually told me I'll be dead soon if I did not start c/l "yesterday". I'm still alive and even better after I started HDT an year ago. Recently I started c/l 100/25 3x /day hoping to help with tremor. It did not. I went to one of the five for a check. He recommended to double c/l and add amandatine 3x100/day. He did not consider HDT even his nurse said a lot patients told her about the positive results. HDT does not have a scientific backup, he said.
The humans are complicated machineries. I design and program sophisticated machinaries and some times ideas which initially do not make sense are solving a lot of issues. If something works and at least is proved to be safe like HDT then why we should not talk about it? If you and other people do not believe in it than that's ok, we respect your right. But we want the same from you.
Regarding BIG PHARMA we all know everything is about money. PD issue would be solved long time ago if it was a desire to help people more than making profits. Medicine should be a field of science more than business.
Medicine is a field of science but also an art except in the US where everything it appears to me is tainted with making money ie business. What I wonder is in a competative system where patients mean income, how often does the neuro say what the patient wants to hear rather than the truth?
But how far to take that? We have (or at least I have) expectations that the doctor will not experiment on me. They may support your right to try what you like but I dont believe we should expect them to prescribe off label if they are not comfortable doing so. That fits into the category of experimenting.
The amount of 2nd 3rd 4th opinions Americans get makes me think patients shop around to find the doctor who tells them what they want to hear
Initially I saw 3 doctors and all 3 gave me different diagnostics. Actually the first one told me what I wanted to hear: I had ET not PD, but I did not buy it.
I was shopping around to find a doctor flexible and open who knows what he was talking about and not an arrogant ass who thinks all patients are stupid.
Actually all are experimenting on us even when using FDA approved drugs by trying this and trying that.
we dont have anything to do with the FDA and I dont believe doctors experiment here.
I wasnt actually pointing at you when I mentioned visiting many doctors though I can see how you could think that. Now I’m curious, what was the third diagnosis you got?
First two told me I had ET and the third it was not sure if was ET, PD or something else. The forth told me I had PD and the 5th confirmed. This was in 4 months interval.
Buzz, maybe sad , maybe not , I had been away for a while and I came back to a line of outrageous posts and It all felt like it was falling apart. Then the people who responded here reassured me that intelligent discussion and argument was not dead. I dont care if they do not agree with each other , they probably never will and they know that but everyone of the reply's was the result of careful consideration some times over years. I respect all of their opinions and that includes your rather short responce . Civilized discussion continues, thanks.
I’m happy you got over your brief discouragement. Going forward finding something about life worth paying attention to somewhere to be at service or something stimulating.That’s the spirit!
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