Urban Hymn

The Verve had an idea that the drugs didn’t work. Whilst there may be an element of truth in there somewhere the truth is that the drugs do work and are very effective but they all carry a warning and most have side effects. So all in all you pays your monies and takes your choices. A balance of risk and reward.

Because the drugs work they should be highlighted as an option when looking at a disease or a condition and they come under the banner of treatments. Mainly because they have had clinical trials and are rightly highlighted as a useful therapy and easy to find on information giving websites that have a responsibility towards certain conditions.

Sometimes these sites also mention other approaches and take a holistic view of  diet, exercise, body and soul and offer advice and even publish news about the latest trends in an area that may or may not help with the relevant condition. Let me be clear here, the condition I am speaking about is Parkinson’s. Some of the trends can be exercise or technology driven and whether it is boxing, dancing or new gizmos that may have been featured on TV and the information based website probably should include these options.fig11

The thing about the boxing and the gizmos etc is that there can, in a lot of cases, be little clinical evidence about the effect they may or may not have on an individuals symptoms, perhaps the extrapolated information relating to exercise would point to a series of benefits but little in the way of actual direct clinical research. In some cases none at all, not even a case study on short or mid term effects.  But have a look at websites and there they are prime position and included, even highlighted and the information is extended to the core audience of the organisations website, the folk with the condition. As always the person looking for the information has their own responsibility to check the veracity of the claims made and rightly so, the organisation is only there to put the information out there after their own due diligence. After all, the reason the organisation exists is to make people with Parkinson’s lives a little less problematic and continue to do sterling work in all aspects of promoting awareness and providing useful guidance.

A quick recap would be useful here. Certain disability and health conditions are lucky enough to have a good website with quality info. Let us assume that anyone entering such a site, which exists solely for the benefit of people with their condition, would make an assumption of their own and that may be along the lines of ‘this site is provided to give me the most up to date and complete set of treatments and aides.’ I think that would be a fair set of assumptions. Agreed?

Lets move these assumptions about the organisations attitude to treatments along a little. For instance you would assume every effort had been made to be up to date. How would you feel if the information provider had learned about a treatment some years ago which had been successfully clinically trialled and they were definitely aware of the trials but showed little interest in passing this knowledge on to the main cohort of their website’s traffic, the people seeking information, needing information, full information, up to date information, unbiased information. To withhold ideas and treatments deliberately how does that sound to you? Lax? Negligent? Unsupportive? Biased? I really couldn’t say, I really couldn’t but taking into account all the above the list of words isn’t going to be very complimentary.

Now put yourself in the shoes of a person with Parkinson’s and try and imagine the emotion you would feel if you found out that an organisation, set up to help you, that you trust, because it does so may good things, has obstructed you from finding out about a treatment and showed so little respect for the treatment that they had not even asked for the results of the clinical trials. Where would that leave your thinking?

I don’t think it is too much to ask for a comprehensive as possible website, allowing people to shape an informed view, some may say holistic view, from an organisation working hard in so many areas to help improve the people with Parkinson’s  lives but if you expected comprehensive info on the website youl’d be wrong.

The drugs don’t work they just make you worse, so the song goes, but the alternatives are ignored. Which leaves us dancing in the street or indeed doing some other unproven but very nice to do activity. Because that is the information fed to us as a complete set.

ted talks toilet
been here before?              certainly have

I Normally sign off my blogs “slainte” which means “cheers” but I am not really in the mood for a drink.

Ach, what the heck.



2 Comments Add yours

  1. Dale Odberg says:

    Thank you very much. I love your observations, thoughts and how you write them.

    1. Jonners1965 says:

      thanks Dale, appreciate the feedback

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