What you tell us
I was diagnosed with Parkinson’s six years ago aged 47. Following the initial shock I decided to make use of my condition and get involved in research for the benefit of, if not my generation, future generations of people with Parkinson's.
I could not control what was happening to me but I could control what I did with it. My involvement in research, provides me with a better understanding of my own condition, hope for the future and what the scientists are trying to achieve.
I heard about the Parkinson's family project when I was asked to read through the patient literature with Prof Huw Morris, and make sure it was easy for prospective participants to understand. This was my first experience of feeling like I was making a difference. The project sounded interesting and I decided to become a participant. At that time I was the only member of my family to have Parkinson's. But shortly after, my elder brother was also diagnosed. There was now even more of a reason to be involved. He also decided to become a participant in the project.
We were seen on the same day but individually. It began with a consultation, forms and questionnaires and a series of physical tests. We had to give some blood so our DNA could be looked at and were carefully talked through each of the processes. It seems logical that a full medical and family history was taken because you never know which piece of the puzzle will be relevant.
My natural curiosity wants to know if I have any known hereditary genes but I know this would not change anything. It would not mean that others in my family will necessarily go on to develop Parkinson's or that any treatment would change. But it is important for the scientists to know and possibly find a gene which is yet to be discovered.
Something that I always remember someone saying to me is, if one of my children later developed Parkinson's there is a whole generation difference and that comes with a generation of more knowledge and better drugs.
I am part of the 'People with Parkinson's' research panel at UCL/Royal free. Here we are asked our opinion on various research projects and ideas, asked to take part and to help with websites and literature.
Whenever I come away from the meetings I feel excited by all that is going on in the world of Parkinson's, in an effort to improve, and ultimately work towards a cure. It leaves me with a feeling that a whole team of scientists are fighting our corner.
I come away with hope.
We appreciate that people may have concerns about confidentiality or worry that if genes are playing a part in their condition - how might this affect other family members? Things not necessarily considered until people are introduced to take part in genetic research.
Concetta Brugeletta our team research nurse has been running a small interview based study and so far has talked to 22 people involved in the research process; some people with Parkinson’s, some of their relatives and some healthcare workers. She asked them about what they already know about genes, how they would like hereditary and statistical information presented; what type of information and in what format is most helpful. Unsurprisingly there have been some common shared concerns and thoughts but what has been particularly informative is the differences in why people want to be involved and the very varied amount of information people seek. All this is helping us devise study information styles and helped us build this website. Overall people are telling us that they want to know they can come back at any stage to talk to the research team and this revolving door approach is what we are keen to make available to everyone who participates.
So if you would like to tell us anything or get in touch please feel free to contact us.