PwP researchers

Research Research discussion
1

Many people with Parkinson's (PwP) are rightly involved in supporting research into the disease, but why stop there? PwP can do research.

PwP don't at the moment of their diagnosis lose the skills they have gained over their careers. There are engineers and biologists, chemists and computer programmers, doctors and mathematicians ... all of whom can apply their skills directly to increasing our understanding of the disease and finding ways to reduce its impact. And, the slowly progressing nature of the disease for many of us, means that PwP skilled in other ways have 10 to 20 years to get up to speed.

Many PwP are equipped to do research: our laptops have an enormous amount of computing power, our smart phones include sensors that measure our symptoms. The internet makes communication easy.

The only thing we lack is the confidence to believe that we can make a difference.

John 

2

John,

I agree with everything you say except, perhaps, the bit about lacking confidence. PWP are playing important roles in research projects and there is always room for more. The Parkinson's UK Research Support Network is a great place to go to find out more and find where you fit in.

Read more at http://www.parkinsons.org.uk/rsn then email [email protected] or call 020 7963 9398.

The RSN is running a recruitment drive aiming to reach 2016 members before 2016

EF

3

Elegant Fowl,

Thank you for your reply. My apologies for not being clearer but, I think we are talking about two different things. In my opinion the Research Support Network does an excellent job in involving PwP in supporting  the research process. Long may this continue and grow. But, as I see it, in addition to that, there's a role for PwP to DO research themselves.

As an example. In 2012 I trawled through publicly available data on the prescriptions written by each surgery in England and used this to estimate the geographical prevalence of Parkinson's. I got as far as putting the results on my website:

www.parkinsonsmeasurement.org  click on Epidemiology

I regret not taking the study further and getting the results published in an academic journal.

John

 

4

IMO

Research has become an all encompassing word covering all sorts of tasks and subjects.

How can PWP and professionals actually make a tangible difference.

The professionals require feedback from PWP to understand and make necessary changes to medication etc.

The better the PWP understand their condition and how they can influence it the better the treatment.

There are many ways to achieve this but you need receptive professionals, educated PWP and the will to make it a team effort.

The most useful advice I have received has come from other pwp and has made a huge improvement to my condition. My attempts to pass this on go largely ignored,I see a lot of schemes but no results tha effect me, 

The professionals seem happy to create endless reports and attend pointless meetings

Charities are happy spending money on anyone that has letters after their name.

PWP dont seem  to be making an impact 

However, all is not lost, there's more good than bad out there; good initiatives well funded.

Comparing success to failure and learning from it then implementing means change and that can be difficult.

We have  a lot of pwp out their with the skills to do this.

Maybe focus is a better word than research.

5

Johnt

I have had a quick look through your website and I get the sense of it. I really like the philosophy of the site and would love to hear more about it. What are you working on now?

Are you aware of Sara Rigarre? She is a Swedish PwP who is very active in quantified self activities. Have a look at her website at www.riggare.se

This link will tell you more:- http://e-patients.net/archives/2015/12/patients-organise-and-train-doctors-to-provide-better-care-patients-writing-in-the-bmj.html#.Vm3_zoiNUSI.twitter

I think Sara has been more succesful than most PwP activists at engaging with the mainstream of research and healthcare.

EF

6

Leyther,

I agree the word "research" has become overloaded. I think the word you use "focus" is appropriate. As I see it, PwP are especially well placed to chase down leads found in the scientific literature with a focus on potential therapies that might give a rapid improvement. For instance, a group of researchers based in Iran have found, in vitro, that cuminaldehyde can reduce the fibrillation of alpha-synuclein, which is a process implicated in the pathogenesis of PD. Cuminaldehyde is found in cumin, a major ingredient of curry. As it is, no one knows whether this test tube result carries through to PD.

EF,

I have been in touch with Sara. She is a good example to us all.

You ask what I'm looking at now:

1. Extending the Levodopa Equivalent Dose Calculator to provide minute-by-minute estimates of the effectiveness of a person's drug regime. The idea being that by adjusting the timing of the doses of the various drugs that we take we can reduce the fluctuations of dopamine levels. These are implicated in the decreasing effectiveness of our drugs over time. Following on from this is dynamic dosing: using data from your body to adjust the timing of doses in real-time to take account of different rates of gastric emptying, protein in the diet and exercise.

2. A device to reduce the number of falls experienced by PwP. This uses a sensor that beeps when it detects that a fall is likely.

If you are interested in any of these initiatives, please get in touch.

As a first step, let's see how many like-minded people we have now. Please respond if you are a PwP researcher.

John

7

John T

The way I see it is you are talking about collecting and analysing data to measure the effectiveness of a methodology.

Lets use caffeine as an example:

I was told by another pwp that caffeine can be helpful when worn off; I tried it using coffee and found it worked and then experimented with it by adding sugar which is absorbed in the duodenum as is levodopa. I have considered other effects like gastric emptying and also the impact of caffeine on circulation of the blood.

So I have taken something that was known and effectively through trial and error  fine tuned it.

I have passed this on to other pwp but only very few have adopted it but those that have had success.

I also checked out caffeine (usually coffee but sometimes energy drinks, which by the way have other ingredients that may be beneficial) with my neuro, he was aware of it and said was ok. I would also advise caffeine can have detrimental effects on the body so check out with your gp if in doubt.

So I have taken a known solution (not widely known and adapted it to my needs and found it very beneficial. Those that have adopted it have had success too. The process of doing this also highlighted the importance of other factors that cause wearing of and / or stop the pills from working. So effectively looking at the solution to one problem has uncovered others.

I believe that this warrants further study; trialling it with other pwp to gauge the effect ie research. PWP researcers could help with this.

Its something that is simple to do and effective and that can be implemented immediately.

Technology can be a great help but do we need an app for everything we do. Keep it simple.

A device to tell us we are in danger of falling I guess works in the same fashion as a car parking detector but its only as good as the driver is in using it. What we need is to develop better mobility skills to aid us when we walk and learn to use devices like walking sticks etc.

Its a team effort, medical professionals, carers, charities but it must involve the patient because pwp hold the key to the information science needs.

I dont see how you can calculate the timings of your levodopa based medicine when it is complicated by so many other factors such as other drugs, metabolism, the effect of sleep etc 

Why would you need to, we have the best sensory detector, analyser and implicator our own brains. They may be flawed as pwp but they still work. I dont need an app to tell me Im wearing off or falling asleep in the car my own senses tell me its what you do about it thats critical.

I feel more emphasis should be placed on learning what your body already can tell you and from that develop the devices we need that allow us to implicate the changes.

My opinion, maybe not yours but I wish you success and the fact that you are making an effort is great and I applaud you for that. We both may be wrong or right but if you dont try you dont find out.

L

8

You say in the post above that research must include the PwP and I completely agree. I review proposals for research from researchers who have applied to PUK for a grant. Many of them know a lot about the science but not about living with PD. Lots of applications are turned down due to the fact that their planned research doesn't take into account of the needs of the PwP, either for the research topic or the way that the researchers plans to use PwP as volunteers to take part in the research.

PUK highlight the need for the involvement of PwP in the planning stage of any research proposal to help ensure that the research project is tuned into the people for whom the research is meant to support.

I know the main topic of this thread is PwP doing the research - but PwP can be actively involved at the planning stage of research by other researchers. This will help them do more focused and relevant research, and use methods that will work for their study volunteers who are PwP.

Joining the Research Support Network and being an active volunteer through that, is an effective way of helping to shape the direction and methodology of research.....

Keld

 

9

Leyther,

Excellent work on coffee. But ...

How many PwP use your technique?
How many doctors recommend it?
How many researchers know about it?
How big is the benefit?

I'm not knocking you: you've already taken it further than most, but anything that works, is safe, and is cheap should be being used by hundreds of thousands of PwP around the world. The question is how to get to that state? 

There's a need to convince people. Part of this involves playing the scientific game: objective measurement of outcomes, statistical analysis of the results, publication in an academic journal.

John

10

John

Absolutely agree with you, sorry I didnt explain better.

Yes thats what I want the science to do to give it credibility.

In the meantime if its deemed safe and is beneficial let people know about it.

What we lack it seems is people who take ideas that are useful to the implementation stage.

A few years ago a very good video was made by the PUK on behaviour problems which I expected to be told about at my next clinic appointment. 

Nothing

The one place where the majority of the 127,000 pwp have to go is to see their neuro. 

Any good information could be distributed there and given to patients on a bi annual update

You never know the neuro might read it too and win win the 89,000 pwp who aren't members might join the PUK.

Its not scientists you need its salesmen and project managers 

 

 

 

 

11

Keld

The problem I have is this: if I could do all the things required to make a real difference I would not be writing this, I would be at work.

PWP have the experience of living with the illness but from what I know of myself and what I have seen in others they are the last people to put in charge of anything. Lack of concentration,  fatigue, side effects of medicines both motor and cognitive all take their toll

We need to be involved because with the NHS under fire we need a more efficient cost effective and less destructive treatment plan.

Drugs are the fossil fuels of our condition we depend on them like we depend on natural gas to heat our homes. They are a convenient and effective way of dealing with PD but they are expensive and potentially destructive. We need to reduce the need for drugs by understanding our bodies more and incorporating more alternative methods.

We need to go green.

We therefore need good support from the ones without PD and train them better to understand our needs.

Efficiency also in engaging professionals; if I have to sit round a table again with a gang of hangers on who brought nothing to the meeting except for one to say it was worthless (yet still claimed their expenses) it will be the F word not the B word I'll be using.

L x

12

Leyther,

When I was carer for my Mum I had no time or energy to do anything to help PUK and their work.

Mum died in 2013 and I have, from a carer's point of view, experience of living alongside PD . I don't have PD and am trying to be a voice for those with PD. I do my best to share what I know, I spent a long time being my mother's voice when she could not speak for herself for all the reasons you stated - lack of concentration, fatigue, side effects of meds and cognitive and motor difficulties.

You are right in that people with PD need to be involved and that we need to engage better with professionals.

From what I understand PUK are increasingly insisting that the projects to be considered for funding by them are the ones that can show they have involved PwP in the planning of their research before they put the application in for funding. 

I hope I make a bit of a difference.....I read posts on this forum and wish I could do more.

Keld

13

You do more than enough Keld

My thoughts are not here at the moment

I find PD easy to deal with, just sick of all the bull that goes with it.

Leave you to it 

14

Will keep on doing what I can, and am glad to be able to do that. :)