Eight months on from my PD dx, my symptoms have decreased to the extent that I am usually unaware of them. I chose not to take any PD drugs. Instead I searched for help through the internet, looking at both mainstream medical research and alternative therapies.
Aware that I was tired and physically run-down, I started taking fish-oil and Vitamins C and D, which I'm still taking. I took Co-enzyme Q10, milk thistle extract and also a very pleasant-tasting liquid tonic for about three months. I ensured that I ate particularly nourishing foods. All these have boosted my liver function (a weak liver is a feature of PD), and my energy. Within a few weeks I felt much better; the heaviness in my legs and awful weariness had gone. And I felt empowered because I knew I was determining my possible recovery.
My PD began with a frozen shoulder, which followed a heavy fall. Before that I had had a broken bone in my foot. PD is a complex condition - and we all know that it varies between individuals - that involves both body and mind. It's possible that we either inherit or develop a strong work ethic that drives us to succeed, to achieve the best outcome; and with that strong, purposeful motivation and a tendency to be cautious - to always 'play safe' - we perhaps also carry the weight of some emotional baggage. So it's very likely that we might be susceptible to PD for some time and that an injury or traumatic event triggers the onset of the symptoms: the body is possibly in a weakened condition and a sudden shock throws it into chaos: that is PD.
PD is not so much a chemical problem: it's more an electrical problem. I knew that the tremor in my arm had to be linked to my frozen shoulder, which was in turn the result of a bad fall - a shock to my system. The idea that my brain had suddenly and inexplicably ceased to produce dopamine - and that no other factors were involved - was just bizarre.
Asian medicine can explain why the scenario I've described causes energy channels (Qi) in the body to run awry and thus cause PD. (It is referred to as 'liver-wind'; the liver is frail and Qi is depleted.) It can be argued that dopamine cells in the brain stem do not die, but become dormant; research has shown some dopamine activity in PwP in the right caudate nucleus.
I have acupuncture and acupressure to alleviate my PD; I also do Medical Qigong exercises and meditation. (Yoga, Qigong and Tai Chi and a variety of 'light-touch' treatments can similarly help.)
Full recovery is possible; several people around the world have achieved this - when the brain realigns itself in a dizzying moment. I hope to achieve a complete recovery. If I don't, then the partial recovery that I now have is something I can easily live with.
I believe we can do a lot to help ourselves - and that our bodies are capable of healing themselves. I've been learning how to take care of myself (e.g. regular, but moderate exercise - nothing too strenuous that would sap the energy) and how to calm my previously busy mind.
Soon after my dx I was fortunate to stumble upon www.fightingparkinsonsdrugfree.com
Here, Howard Shifke gives superb advice, includung videos of Medical Qigong exercises. His blogs are encouraging, enlightening and uplifting. They sustained me in some of my darkest moments.
And then I found www.pdrecovery.org
Janice Walton-Hadlock is an Asian medical practitioner and acupuncturist, who has successfully treated many PwP. She has researched PD extensively - and has recovered from it herself. She discovered the link between a foot injury and PD. Her book 'Recovery from Parkinson's' is available to read online; it's an illuminating read. I was amazed to find explanations for a whole gamut of symptoms I'd had before my PD dx that my doctors failed to identify. And now I have great delight in noticing the signs of recovery she describes. And finally, she has researched the PD drugs in her book 'Once Upon A Pill', also available to read online. She describes in intricate detail how they work, how doctors don't properly understand the effect of decreasing and increasing dosage and how addiction happens.
Unfortunately most doctors don't appreciate that recovery can begin spontaneously and it is then that addiction problems and the worst adverse effects can occur. Janice Walton-Hadlock now no longer treats anyone who has been taking PD drugs for more than three weeks. She does, though, accept that very elderly PwP may need to take PD drugs.
Please forgive the length of this posting: I'd really like to send a sincere message of hope to everyone with PD. We can remain positive in the knowledge that recovery is possible. Let's say 'recovery' rather than 'cure'. Researchers are bogged down in the detail of brain chemistry. They need to look at the big picture. It's complicated, but as Howard Shifke says, quoting Robert Frost, 'the road less traveled by' - the road to recovery - is ahead for us all to take.
Any one read this
Would you recommend. Good or bad
Stop Parkin' and Start Livin' is priced at $24.95
everyone with pd has dopamine activity in the caudate nucleus (right and left) because half the dopamine comes from the ventral tegmental area which is not much affected by pd. there is some very interesting research on why SN neurons die and VTA ones don't. there may be some treatments resulting using l-type calcium blockers.
HI Recovery & everyone,
I don't wish to be a wet blanket and hope is hope and we all need some of that, but new is new and experience over time has weight.
Eight months after my dx I could have ruled the world; five years after my dx I held down a massive job, having received two promotions since dx. Write up after eighteen years. I am retired early yes, but I have still learnt to play the saxophone, published one book, written another and set up a charity. I haver taken anti PD medication throughout that time. I have been blessed with a slowly progressing version of the damned condition, for which I am grateful. I have been helped along the way by many people who have also researched PD thoroughly. It is interesting how many different views there are. I have had a DAT scan, amongst other things, which shows categorically that my dopamine producing potential was severely limited.
So you refer to 'recovery' and mention that a few people around the world have recovered from PD. I wonder why 'wrong diagnosis' isn't the first thought? It is surely more probable, given the numbers you mention.
I don't have any problem with people trying to give others hope, but I really do wonder about giving people hope that they could recover from a condition like this, when it has been properly diagnosed. Certainly, the things you describe (or at least some of them) would undoubtedly be helpful in building confidence, mitigating a degree of symptom, helping an individual take more control of their condition and their lives. It just seems to me that, given the numbers, if it were an opportunity to recover, it might have been looked into a bit more and have shown more significant examples.
Anyway, I'm certainly not arguing against your experience, but as I say, lets check again after eighteen years, or even half that time. As long as your diagnosis has been objectively tested (I know that is a difficult one), then I think you will have one heck of a good case to make. I hope you manage to hold it where it is now or even get some improvement.
By all means eat well, take supplements, do Tai Chi etc etc and it will probably do you a power of good.
This "advertisement" is for various non profit making organisations relating to PD
Note: a non profit making organisation is not necessarily a volunteer run organisation. It may have an employee or employees that take a wage/expenses. The profits are spent on what the organisation deems its requirements.
In the case of the Parkinsons Recovery Project:
"If you would like to earmark your donation for a specific need, please click on one of the following:
Office supplies (We are currently hoping to replace our small photocopy machine.)
Keeping the website up and running, and updated as often as needed
Improving our web-search visibility
Developing an informative program to help MDs understand the findings promoted by the Parkinson’s Recovery Project
Publishing rights for the books of Dr. Janice Walton-Hadlock (To date, November, 2012, the Parkinson’s Recovery Project has not been able to reimbursement Dr. Walton-Hadlock for her time spent in research or in writing, or for the rights to her books, which she has very generously made available for free, on this site.)"
The Parkinsons Recovery Project are the aforementioned Dr Janice with a revenue of $71,000 dollars a year.
Lots of free stuff, also free treatment etc. They only accept people who have taken pd drugs for less than 3 weeks. A niche market you might say.
My opinion? Absolute twaddle! You make your own mind up though.
Yes I have read Stop Parkin Start Living. I would recommend it for an alternative explanation of PD and useful, positive ideas on self help. Some of John Coleman s approaches are not unique to him ,but some I think are. On balance I found it quite uplifting and have tried to take up some of his ideas. Worth a read in my opinion.
I must first correct my description of Janice Walton-Hadlock: she is an acupuncturist and practitioner in Asian medicine.
Leyther: my description of JW-H’s research and publications is not an advertisement. She describes her work very modestly and it is available to read without charge on the internet. Her research on PD has been more thorough and all-encompassing than any other individual’s; her raison d’être is treating PwP, not making huge profits. Contrast that with the powerful drug companies who make £millions and who fund – and control – most of the worldwide medical research. And what are the results of that? More drugs that flood the brain with excessive amounts of dopamine, causing serious adverse effects. One has to wonder just how much the medical establishment is influenced by the drug companies.
The problem of dopamine production is not the cause of PD: it is the result of other things going wrong in the body. I mentioned the complicated scenario that can underlie PD: the combination of physical factors – an injury, (particularly to a foot) tiredness and weakness in the liver – and psychological ones: PwP have usually been very ‘driven’, relying on the power of adrenaline to keep themselves going at all costs. I mentioned that there is an element of caution or wariness, of ‘playing safe’, too, which manifests itself in PD as anxiety. The relevance of an injury is this: when we are driven to pursue our goals we force ourselves to keep going, and this kind of attitude (especially if it involves a strong emotional component) can make us switch off any pain and ignore the effect of the injury. This means we ignore the shock of it and we don’t allow ourselves to deal with it properly: this is described by JW-H as ‘dissociation’ and it causes havoc in our bodies. She describes in detail how it contributes to PD.
Although the idea of a foot injury causing PD might at first sound far-fetched, it begins to make perfect sense in the context of channel theory in Asian medicine. The injury, because of the dissociation, causes a blockage and disrupts the flow of energy in particular channels, which in turn affects dopamine production in the brain stem. But, as I mentioned before, dopamine is still produced in the right caudate nucleus, which, significantly, is the part of the brain that deals with assessing risk and safety – something that PwP are preoccupied with. For recovery to take place, the injury (however historic it might be) has to be addressed so that energy can flow correctly through the body. This is what I’ve achieved so far.
Full recovery happens when the brain realigns itself as dopamine production is fully restored in the brain stem; this can only be achieved when a different mind-set is established, based on a heartfelt acceptance of whatever life throws at us; depending on whether or not we are religious, we can call this ‘faith’ or ‘surrendering our ego’. Meditation can help with this last and crucial stage, helping to switch off the adrenaline and find a means of calming the mind, in search of a spiritual acceptance of who and what we are. Our minds have to give way to our heartfelt feelings.
Thank you, Radar, for your measured response. I’m not claiming that everyone can achieve full recovery: it’s possible, but it’s difficult. Many of us, though, can get to some stage of partial recovery – without the PD drugs. I’d like more people to know that, and it’s not false hope – it’s quite realistic.
John Coleman and Bianca Molle have written about their recoveries, as have Howard Shifke and Janice Walton-Hadlock, who give wonderful advice. Everything they say rings true for me, and my doctors fail to provide help that’s anywhere near as good. There are too many negative messages sent out from the powers-that-be. Let’s at least be a bit more positive.
everyone is entitled to their own opinion and world view. i happen to think yours is bollocks, but i would not normally interfere. but when you introduce pseudo scientific claims you are trespassing on serious turf.
can you give references to the claim that the right caudate nucleus produces dopamine? (by the way the term is obsolete and is now generally lumped into the striatum). and if it did so what? the problem is the interaction of other parts of the basal ganglia. also your reference to brain stem is wrong.
dopamine is produced by several areas including the kidneys, the problem is the lack of dopamine in a specific control loop nots its lack overall.
It is so nice to hear that you have been recovering. I would love to ask you lots of nosey questions about what exactly you are doing and what results you are getting... Oops I just did. I don't think there is the facility here for personal messages or I would be doing that.
My husband was dx just under 2 years ago but unfortunately he does not have the enthusiasm you have and is not doing the qi gong OR ANY EXERCISE! (which everybody here will agree is quite important), although we did have a go for a while.
He is however still drug free and functioning well. I still occasionally hold his feet and am now training in Bowen and am treating him with that. From what I understand from my research the people who recover are all, like you, very whole hearted and give it their all. I have read both the JWH books and found them very inspiring, My beloved hates reading on screens or anything long winded so you can imagine... 600 odd pages each with footnotes. Her theories and research seemed very sincere and thorough. I don't claim to be a scientist but I'm not stupid and think anything not harmful and affordable is worth a go as, so far as I know, there is no- one claiming to have recovered by the mainstream route.
I wish you all the very best with it and would love to hear more about how you are getting on.
8 months on from dx!
You proably wouldn't have seen much progression of your PD in this timeframe anyway, SO, do whatever you want and take whatever you want if it makes YOU feel better but, I'm of the same opinion as others who have posted on this thread
I am also realistic.
Maybe my OH should do all that you suggest and see if they recover, reversing 15 years of PD would be great.
You have managed to introduce some controversy to the "Meet and Greet" portion of the forum. I guess I'll jump into the fray, too.
Like you, when I was first diagnosed, I chose to remain drug-free. But as my symptoms began to emerge, I began with small doses of Mirapex. Over the years, I have added other medications as well as dietary supplements. Also, I get lots of exercise. Result: at about 16 years with PD, I am in the same apparent condition you are. No one ever guesses that I have an illness; I forget my symptoms most of the time; and I lead a perfectly normal life. By great good luck, I suffer no side-effects from my treatment of the disease.
So stick with what you believe in; you are obviously doing well. But I would suggest also that you keep an open mind about medications later, because they can be beneficial. PD is so variable and complex that it may require more than one approach.
Turnip – it doesn’t cost anything to be polite. I’ll refer in future (if I need to) to ‘substantia nigra’ instead of ‘brain stem’.
The term ‘caudate nucleus’ (a particular part of the striatum) is not obsolete, as the following recent research shows.
Based on the fact that the right caudate nucleus “classifies stimuli into categories”, (The roles of the Caudate Nucleus in Human Classification Learning: The Journal of Neuroscience, 16 March, 2005, 25(11); 2941-2951) this brain area helps decide if something is dangerous or safe.
Most PD research has been preoccupied with the ‘death’ of dopamine cells in the brain, but in 2001 a researcher found higher than normal levels of dopamine activity in the part of brain that assesses risk and safety. His research involved unmedicated PwP and his paper concluded, “It is possible that that there is a unique disturbance of circuitry in Parkinson’s that could explain the paradoxical, highly significant relationship between harm avoidance and dopaminergic function in the caudate.” Interestingly, there was only less dopamine in the motor imaging area. (Personality traits and brain dopaminergic function in Parkinson’s disease: Proceedings of the National Academy of Sciences USA 98:13272-7; Valtteri Kaasinen, MD, PhD et al; 2001.)
Lynn – it’s good to hear from someone who is acquainted with JW-H’s work. The foot-holding is a great thing to do – and to meditate together as you do it. I hope your husband can be positive about everything, because our mind-set affects our condition.
Howard Shifke’s blogs are a godsend, and his videos of Medical Qigong are very useful. But honestly, of all the things I’ve done, I don’t know which have contributed most to my improvement, though I’m inclined to think that Vit D and fish oil have a definite part to play. There has been some research on these – we need more, I think. Otherwise, any of the recognised therapies are worth doing and a diet of highly-nourishing foods is good e.g. oily fish, eggs, nuts, and lots of fruit and veg – especially any that have a strong or dark colour.
I’ve seen off several nasty little symptoms and the best bit is the recovery of facial muscles – lots of tingling and little electrical charges, especially around my eyes. My thigh muscles lost their rigidity quite quickly with the acupuncture. My arm tremor is more intermittent, but is annoying when I’m eating or feeling under pressure. I think the hardest, but most important thing (which I’m still working on!) is the mental ‘switching-off’. The calmer and more heartfelt we are, the more healing can be done.
Good luck to you both!
you are quite right and i apologise for being rude. quite uncalled for.
i shall enjoy looking up the references.
What do you specifically recommend for those of us who have had PD for a number of years and have been taking prescribed medication,(sinemet, selegeline,mirapexin etc).
Can you give us a typical daily diet (including supplements) and an exercise routine that we could follow.
Assuming my Neurologist and GP consider me fit enough and the diet will do me no harm, how long before I would see results.
Although I find what you have to say very interesting.Along with references for further investigation,comtemplation and consideration.I feel that the package you are advertising(sort of agree with Leyther on that one)is a common sense,it's all out there,self-help,amalgam of alternative treatments,potions and therapies,that can be used along side the "Legitimate medication" that most PWP have to take already in order to function enough to even consider rolling out of bed.
As you say however,we are all different.The danger is,people are easily led.A walking(more like stumbling)Holland and Barrett filled PWP,could be doing themselves more harm if reducing their PD meds,filling their bodies with excessive over the counter remedies and attempting to follow your "cult philosophy"on PD.
I think early stage diagnosis PWP may benefit from some of what you claim,but we are all so fundamentally different.There is a lot of good information contained within your advice,especially the psychology and emotional aspects,plus the post trauma onset theory.However,I believe most people should take it on the whole,with"a pinch of salt".Take parts from the whole,but remain realistic in their own personal circumstances and journey through PD.
Good debate though
All the best
OK .... definite PD symptoms began when I was 15. However, didn't commence meds until I was 26. Those years inbetween were a struggle, gradually getting worse (could hardly walk, regular falls, whispered speech, severe tremor etc). However, in general I was fit, followed a healthy diet and maintained a positive outlook. In July 1993, I took my first ever half tablet of sinemet plus and within 20 minutes was back to 'normal', ie symptom free. That was a long time ago now, but although I have increased medication as the disease has progressed, I have stuck with only levadopa. Sally.
Though I cannot agree with your analysis of cause or that we can recover I do wish you well on your journey.
One huge problem I have with these approaches is that believing in cure seems to be a cornerstone to being cured ( or in recovery, i dont see a difference). What then happens if a person does not recover? Is it because they do not believe enough and/or have failed to follow the path correctly? This means it is the person who has failed not the treatment. I have seen this situation with cancer sufferers in the past.
I don't think alternative practitioners are all necessarily exploitative, i think many are genuine. What they do is sell hope which conventional medicine can't do in the same way. I think that is what attracts many people.
Frozen shoulder type symptoms are a classic early PD sign. The causes you mention are all personal or environmental but what role if any does genetics have in causes do you think?
Like Radar I was barely noticing my condition at first but 5 years on it reminds me continually of its presence.
Thank you, everyone for your replies.
I'm sure none of you are expecting me to suggest a 'prescription' for everyone. As you say, we're all different. I've mentioned in my previous posts several causes of action that might help us - whether it's good food, supplements, gentle exercise, acupuncture or meditation or other therapies. I don't know definitively what works and what perhaps doesn't, but I do know that a particular mind-set can contribute to PD and that adopting a different one is likely to at least improve our condition. And obviously we need to think positively and do all we can to help ourselves - not just rely on the PD drugs, which can be very problematic, and of limited use.
The websites I referred to before have helped me greatly. I have to admit that it's taken me many months to be able to look at and use this site properly; I found it too depressing until now, when at last I'm feeling more confident about my prospects. I sincerely hope that neurologists and researchers will take some notice of this discussion, because much wider research is needed into PD and its treatment.
My best wishes to you all.
"but I do know that a particular mind-set can contribute to PD"
And what exactly IS that mindset???
What are you suggesting?
Benji - the 'mindset' you're asking about is what I described in my first post -'It's possible that we either inherit or develop a strong work ethic that drives us to succeed, to achieve the best outcome; and with that strong, purposeful motivation and a tendency to be cautious - to always 'play safe' - we perhaps also carry the weight of some emotional baggage.'
This is what we need to change - to become more calm and accepting, and to deal with any emotions that we might have tried to bury in the past.