I am willing to consider any alternative ideas but if I try to discuss any of them with so called health proffessionals the attitude varies from dismissive to patronising - why? - are they frightened of being beaten to the winning post
Sorry - i thought this was going to start a new section altogether- if the moderator could do that i think this topic deserves to be highlighted
Hi followme, I do have some sympathy for the medical profession here as their job is to try and provide answers based on as much fact as possible. I see a Bowen therapist once a month and I find she is much more of the mind that the body can restore it's own balance given the right suport. As well as giving me a massage she has given me a lot of other support in terms of giving me hope and helping me explore natural remedies. It may help you to try and find someone like this in your area - they should be prepared to talk to you about what you are trying to achieve.
I agree with you that this site would benefit from an area to explore natural healing processes.
Hi Gazelle, On the point of doctors, have you ever tried to discuss an alternative medication with a doctor. The usual reaction is that they don't know anything other than the NHS solution - Sinamet, Ropinirole etc... which are guaranteed to eventually produce the very symptoms they are treating.
And what exactly do they know. After 40 years of research, the PDS by its own admission, says the cause of PD is still unknown and there is unlikely ever to be a cure - see "Research>Current Research” on the PDS Website.
Now look at alternative medication. Most of the alternates I have seen are completely natural products and knowing that most synthesised drugs have their origins in the natural world it seems to good make sense to pursue the use of these in preference to just filling us full of harmful chemicals. It seems ridiculous that most alternate therapies are outside the NHS remit and therefore have to be financed by oneself when one can rarely afford it. If they really want to prove that the chemical way is the only way, why not do clinical trials on the alternatives and prove once and for all that they do not help.
I feel that my own experience of one natural product has turned my life around. Just over a year ago I was put forward for the deep brain stimulation operation as my condition was worsening. The stiffness coming on more often and staying longer. I was finding I needed to use my wheelchair more and more. At the same time a friend advised me to try a natural food supplement. I took the supplement regularly and my general health started to improve. The PD also responded. Over the months the stiffness reduced more and more and after several months I went over three months without needing my wheelchair at all. By the time I saw the specialist for the operation I was so improved that I was (happily) told I was too well to need the op yet. I still take the supplement and the prescribed drugs but I would say I have successfully wound the clock back five years. This costs me money that I can ill afford but the new lease of life is well worth it. Think how many other people may benefit if this were tried, tested and available on the NHS
Still as I said they have not made any significant progress in the last 40 years so don't hold your breath. Just to finish, having been diagnosed 10 years ago I recently asked a specialist, "if I came to you now (10 years later) what different method of diagnosis would they use" The answer was "nothing different" we still ask you to touch together your middle finger and thumb, tap your feet and ask you how you are. So please tell me someone "What exactly have they learnt”
Just curious - what supplement do you take??
Shark Liver Oil whose main components are 1)Alkylglycerols (aka Alkoxyglycerols)
3)Omega 3 Fatty Acids (DHA/EPA)
As a matter of interest i noted recently from an american source that Omega 3 fatty acids have been shown to be useful in the treatment of Parkinsons
What natural supplement did you use which helped you so much? Can you share it with other fellow sufferers?
im confused what do you mean sinemet will eventually cause the same symtems as what there treating now,does this mean even if im only 40,i got no chance of any normal life to look forward too as well,and there is more than likley never going too be a cure.i was feeling positve,not negative thoughts are coming back.ive gone through so much this last year,and managed to conquer them ,and this has pulled me back down ,im on sinemet ,and i thought this would help me,now and in the future,im so wrong again.
Hi followme, I think maybe I have a more open minded neuro - he is not against alternative therapies and his advise to me was to eat well,and exercise and be positive - he is not at all arrogant and does not assume that western medicine will cure all. I too am following a more natural path and am hoping it leads to wellness. I feel very happy about your progress - both for you personally, and also because it shows that the body has power to heal itself. Good luck on your journey - it would be wonderful indeed if we could demonstrate the benefits of a healthy approach by getting better - perhaps then we would have some luck with support from the NHS!
Hi alij - you should speak to your Neuro about medication if you are worried - I don't see how anyone can say for sure what will happen in the future so please don't let this comment drag you down - a positive attitude will help you a lot. many best wishes and look after yourself.
Hi Ali, I had no intention of bringing anyone down so please don't become despondent. As much as anything the need for an holistic approach is vital. My attitude to PD is and always will be it lives with me and goes where i go. It stops me from doing nothing just some things take longer but I cannot accept that the NHS has all the answers. I am sorry you found out about the medication this way but it is a fact. I wasn't told about it when I started my medication regime but was made aware of it by people at my PDS group
More - I am also sorry if I have blurred the iconic image you may have had of the medical profession but I think you have to be realistic. They are only human and although they can alleviate many things it feels as if the mystery that surrounds medicine is fostered in order to keep control. I have not built them up, they are responsible for that and I am afraid even the PDS makes comments that I feel are contradictory. You only have to look at the latest publication "Four decades of Discovery" and read articles on the web-site to see that if you cut away the dross, time and time again you see the same thing. They talk of major advances and how much closer to a cure they are yet we still see the same basic drug regimes, Selegiline - known about for about thirty years, apomorphine - has been around for twenty years. Please read the Wikipedia information about Levodopa - I am not scaremongering - just being realistic. Knowledge is power, don't be afraid of learning
Hello followme - you have started an interesting thread here and at the risk of being shouted down, I wanted to say that I dont think you can say that the health professionals have made no progress over the past 40 years - the fact that we are mostly able to lead as normal lives as possible is a testament to the wonderful drugs and care available. I also feel a word of support should be made for all those dedicated researchers who spend their working days searching for (1) ultimately a cure and (2) drugs to alleviate our symptoms in the meantime. I am pleased to hear that your alternative route is working for you but not everyone wants to go down that path. I have just started taking Stalevo and discussed the possible problems this may have for me in years to come - I said to my neurologist that I would prefer to have a good quality of life at 54 rather than worrying about the future when nothing is certain and who knows what might be happening in 10+ years time. Best wishes Sue xx
Hi Sue, I do agree that not all health professionals are the same and i think that chewexpert has a point with the link he has provided. Keeping fit and focused is vital but try and step outside the NHS circle and you are on your own. Be outside the circle and poor and help is just a word in a dictionary. As with lots of other proffessions, most people start out in the NHS with good intentions but very often they have to conform to the system or go. Ask any nurse what they think about the NHS.
Anyway I think I've done enough character assassination, I would be more interested in discussing positive solutions. Have you ever heard of NADH or looked at the American info available. They seem to be ahead of us in PD resarch
Following on to the observations made under the heading Low Dose Naltrexone yesterday - I asked my Neurologist what he thought of this treatment as it seemed to be of interest especially in the U.S. He said he had not heard of it before, so I gave him details of the book I had been reading and he has promised to read it before my next 4mth appointment. It proves that some NHS consultants can be very co-operative and will look further than the pharmacutical companies for guidance.
It is very depressing to hear it said that in the longer term medication produces the symptoms one is hoping to control.
I have been desperately trying to come to terms with the fact that my husband may have to start medication, and hearing this sort of thing does nothing to help morale - quite the contrary, which is most unhelpful.
It is possible to delay the need for conventional prescription medication by using alternative treatments systems such as the Parkinson's Improvement Programme. This should be made clear by neurologists and by the PDS so that the use of palliative prescription meds is deferred as long as possible. It is in line with the guidelines of the National Service Framework for long term conditions.
Some PwP have shown that the need for prescription meds can be delayed for years and this can only be regarded as a bad thing by those in cahoots with the drug industry.
Hi budgies, I really don't see how knowing all the facts good and bad can be unhelpful. What is unhelpful is the attempt by recognised bodies to disparage other treatments which may be more succesfull than is presently available
Hi Chewexpert, are the details of the parkinsons improvement program on this site?