My feelings about "Research"
I have been asked to give a presentation to a Research company from the perspective of a PWP and I thought I had better do some research myself.
I would like to incorporate comments by individuals with regards to emotional response. For example to me it means
1) Hope of a cure in the future
2) Here we go again another fund raising day.
I will need to prepare this at the weekend so your help is greatly appreciated.
Thanking you all in anticipation.
This topic is also in Social and Creative.
For me, research is also about discovering ways of improving quality of life without waiting for cures. Whilst the goal of much Parkinson's research is to slow or stop the disease progression, research aimed at understanding the wide array of symptoms is highlighting strategies that people with Parkinson's can use right now to manage symptoms and get more out of life. For example, thanks to basic research, we now know that when turning, people with Parkinson's tend to turn the upper body before the legs and feet, thus compromising their balance- knowing this, we can make a conscious effort to focus on the lower body when turning and avoid falls. Research into different forms of exercise has also thrown open a big tool box we can use to make the most of what we have. I would also like to thank those researching technological wizardry for the array of gadgets that help on a daily basis, including the internet!
Nice initiative (both of them to ask you, and of you to ask us). so here's my take on research:
Overall I have very mixed feelings about it. On one side, I'm obviously very happy that people are focusing on it. If we keep going like this, sooner or later we'll find the answer to beat this PD thing. And for this, I'm grateful to all those folks whose daily jobs is to find a way to help PwP. And I can guarantee you that this has a whole new meaning for me since I was dx around 2 years ago - makes me wonder how many people do appreciate research properly.
On the other hand, I feel a bit of frustration, because I get the impression we could progress a lot faster. Maybe that's just perception - but that's my perception. Now, I know that criticising is easy; it's a lot harder to do it in practice. So, allow me to at least ask a couple of questions that illustrate my biggest question marks about PD research as I understand it:
1. Why is it that all the research studies assume that PD is caused by the same problem for all PwP? For example, when I read a research study on inflammation, I'll see that they took 2 groups of folks with PD and try some anti-inflammatory meds on one group and give a placebo to the other group to see if on average the medicated group got better results than the control group. Then, invariably, the results show no statistically significant differences between the two groups and they'll say "oops, we need more research to confirm if inflammation really plays a role in this". Now, imagine for a second that only 20% of PWP have PD because of inflammation (and the other ones have it because of some other 5 or 6 reasons). Couldn't this be a reason why nothing has been found to work yet? Surely, with 5 or 6 (or perhaps even more) different causes, it's highly unlikely that one would ever find something that works in a statistically significant for all PwP. And isn't it likely that there might be multiple causes for PD? Just imagine that this was the reason why many of the research studies gave the results they did.
2. Does it make sense to find ways for PwP to collaborate more actively in research (i.e., not just as subjects)? PwP know more about their situation than any researcher could ever dream of knowing. True, most of us are not medically educated and struggle with the medical lingo, but we can see relationships with our medical history and lifestyle habits that no researcher has the slightest chance of getting close to. And by the way, lots of PwP also have a pretty solid academic and professional background too.... and we have a very healthy and pragmatic sense of urgency too :-)
Hope this is of any help. Cheers,
Excellent comments, many thanks to you both.
Excellent idea Bogman.
I agree strongly with lfs point 2. I think we should be using all the skills and resources that we can to drive research faster. In part that is about driving more resources into the conventional academic/industrial research machinery but I think we should be trying to find ways for PwP and their sidekicks to help with research projects.
Effective research is a great source of hope for all of us. Activities that support research provide a sense of purpose and are a great way of keeping active.
I can't prove this but I get the feeling that there are loads of PwP who have skills, insights and enthusiasm that they would happily offer to research projects. I suspect there are an equal number of researchers who want or need help but don't know where to ask.
One of the key roles that only PwP* can play is that of trial participant. That is an important role but its not the only thing we can do. Maybe the term 'volunteer' conveys some notion of 'amateur'. Perhaps if we used words like 'advocate' or 'pro bono' a bit more we might change that.
Either way we need to facilitate more active match making between researchers and the rest of us.
* apart from controls.....