Call to arms - experts

It has been said before but I will say it again, we are the experts, we are the pwps, we are not some kind of experiment. When we are prescribed our meds do we really question why?

I believe that we should question more and accept less mambo jumbo from the medical fraternity. Continued shuffling around of medication to make it fit the symptoms leaves us confused and insecure. Was that the Parkinson's? Was that the medication? Was that completely unrelated? Or was that just my age?

Take care gentle reader, yours in heart,

Tony

20 Replies

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  • I totally agree with u I'm sick of being told to listen to the so called experts!

  • After all it is called "practicing medicine". I thank GOD that we all have the power to research. I was diagnosed in 2001. This year, I have been working on healing myself. Of course I do have a team of doctors. Homeopathic, neurologist, chiropractor, and pharmacist. I turn 60 Saturday and feel great. I take Azilect, Amantadine and Neupro. I have found discount cards for each drug. I exercise twice a day 5 days a week. I sleep 4 hours a night. Have lots of energy. I also pray all thru the day. When the pain kicks in, I smoke pot.

  • Amazing! A man after my own heart! Do any QiGong?

  • Not yet, on list.

  • Amazing indeed!! two men after my own heart!! What isQiGong?

  • I really do believe it is still a lot of unknown quantity with the medical fraternity.

    For all we hear of new treatments, new findings.

    The people we really need the information from i.e. our GPs, etc. seem to get all muddled when it comes to questions.

  • Yes, i agree oldtyke, GPs generally seem to know only a little about PD. The average GP in the UK is likely to see a new case of PD every three years so over a 35 year practice may see 10 people with Parkinsons and the majority will be older onset.

  • i don't know much about parkinson i noticed things with my brother that i was not happy about wrote a letter to his doctor demanding he was sent to hospital he has been perscribed medication for parkinson had a head scan that was clear

    now going to get in touch with o.t as he needs a wet room so fingers crossed i have no problems however if i do they will know that mission inpossibel means nothing to me i am on this site because it will help me to understand more about this illness

  • How lucky he is to have you!

  • The entry in wikipedia for PD is quite good if you want to know about symptom that may .arise.

  • And we need to question ourselves and our beliefs in the same way as we would like the experts to be questioned. It is entirely possible that any confidence we have in our own approach to PD or any other ailment for that matter is not well founded or at least not as well founded as we would like to think.

    So for example there is a thing called Loss Aversion. This is mental process where we collect "evidence", or examples of incidents that conform to our our beliefs but any examples of incidents that contradict our beliefs are discounted. This happens without our full awareness and if not checked can lead to a very unreliable, very inaccurate view. This should be less likely to occur with professional medical investigators of whatever type because they have to apply rigor in and reproducable results that are scrutinised in detail.

    With regard to individual dealings with consultants then there is the danger that, in some cases, we may not take heed of their advice because due to Loss Aversion their advice does not conform to our beliefs.

    However I am sure that on some occasions the "experts" miss something or get things wrong and so it is appropriate to make sure that you are getting good information that is fully up to date and appropriate for your individual manifestation of disease.

    So I am agreeing that the medics we consult should be questioned but then we should be as well..

  • Good point. Thanks for cautioning us.

  • I'm really fortunate because I have a neuro who really listens (usually). In fact, his appointments always run late because he's such a good listener. And a research doctor.

  • I had DBS in 2004 and it was a blessing to me!! I still have good days and bad days but I soldier through the bad days!! To say I am better off because of the surgery would be a gross understatement!!!!!

  • Hmmm, how frustrating, there's that saying "if you don't use it you loose it!" that seems to apply here. Often it's difficult enough getting going with something even as a non-PD person but when you feel stiff all over and its a huge effort to just stand up I find it is very easy to forget that after some effort a lot of the discomfort eases and you can begin to enjoy doing something. So what I am loosely suggesting is that if it is possible to encourage your father to get over the initial effort then maybe he will have enough mental momentum to keep going. As I say though I find it is easy to simply forget the reward of getting over that initial hurdle and so you would constantly have to goad him into action.

    If he could go somewhere for exercise classes of some type (maybe Tai Chi) then that might encourage him. Regular appointments, social interaction, feeling better afterwards might all encourage him out of apathy at least for part of the week.

    Do you live near your father only I imagine success might require more of your time than you my have available anyway good luck and I hope you can find a way.

  • There has been no new meds for PD for over 20 years,the scientists/neuros ect have lost focus while we continue to suffer.

  • Have you any evidence supporting your assertion that all the thousands of people, en masse, who are involved in PD research and care have collectively lost focus? I imagine that you are only expressing your frustration rather making an informed observation?

  • Its mainly a personal,frustrating opinion based on my experience and that of others who i,v spoken to,i have had 5 neurologists up to now and their lack of knowledge and that of GP,s amazes me,i have actually had to make reccomendations to them about what meds i could try they seem to want to stick to what they have given to you previously when its quite obvious they arent having an effect wether this is down to them being liable to blame of the side effects i dont know,i,v put question to people involved in research and they dont know the answer as to why there has been no new drugs for so long,i,v also spoke to a lot of pwp who are of the same opinion that they are are frustrated at the lack of progress,maybe its because pharmacuetical companies are not keen at selling less sinemet ect the proifits are to valuable some of them are just getting the franchises to sell them.

  • Consultants are highly specialised people. If you have seen only neurologists, then you have not seen a consultant specialising in PD and it is more than likely that they don’t have the detail knowledge of a “Movement specialist” or whatever they might named.

    Where I live there is 1 (that I know of ) neurologist specialising in PD and unknown numbers of consultants of unknown specialisation – if any.

    The only consultant I have seen is not a PD specialist he was called a neurologist. Having made an initial diagnosis and confirming that diagnosis 6 months later he handed me over to be under the care of specialist PD nurses. The nurses have day to day responsibility for all PD cases within a certain area. They have the authority to prescribe and advise and provide regular check-ups.

    I have no concerns regarding their competence and regarding the neurologist that I have seen my expectations of him are tempered by the fact that he is not a PD specialist but also I have no dissatisfaction there either.

    Now, PD is a particularly complex condition. Indeed it may as I suspect be found that there are further sub-divisions or types of PD that have yet to be defined. Hence the ordinary bog standard idiopathic type as opposed to the young onset type. Or PD with rather than PD without a tremor, etc.

    When we amateur PWP discuss PD things on this site, invariably we only have knowledge of the outer 1 or 2 layers of the PD onion, the medics may be knowledgeable of the next considerably more layers. The main difficulty is that we have little idea of the size of and number of layers in that PD onion.

    They say a little knowledge is a dangerous thing and I put it to you that our knowledge of PD being limited to those 1 or 2 layers of the onion constitutes a little knowledge.

    So, see if you can get to see a consultant whose speciality is PD. When making observations about the world of PD medics and researchers consider that your own knowledge (though probably considerable compared to many people) will be much less than that of the real PD specialist.

    Regarding the drug companies not wanting to sell less Sinemet, the manufacturer has recently come to the end of patent protected production. There has been a world shortage of Sinemet, while other manufactures gear up production of the generic equivalent, whatever that is. I take Madopar rather than Sinemet and the generic for that is Co – beneldopa

    Regarding research taking so long to produce new treatments it seems more than likely that the complexity of this condition inevitably has led or will lead to treatments that are commensurately complex but still require the rigor in testing and experimentation that is required to provide treatments that have minimal risks associated with them.

    I hope you find a PD specialist who is able to provide a least some of the answers that you seek.

  • Hi Tony, I agree with you,why do we have to listen to the experts,they do not know everything.

    We know our bodies better than anyone. I do trust my Neurologist,up until my last visit when he insisted I take more meds after I told him I am feeling fine with my current dose of mirapex and sinemet 2x daily.He listened to me and agreed.

    Thanks to everyone who share their experiences,we all benifit from each other!! :)

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