‘My experience of research’, Mrs Fiona Donald
‘My experience of research’ from Mrs Fiona Donald, Helensburgh Support Group Lead and Research Champion volunteer for Parkinson’s UK
My contribution regarding research is…..
My name is Fiona Donald and I was diagnosed with Parkinson’s at 46 years old. Following my diagnosis, I joined Parkinson’s UK. After going to research meetings in Glasgow and listening to research talks by Dr. Beckie Port and Claire Bale from Parkinson’s UK, I decided to put my effort into taking part in research which might lead to finding better treatments and a cure for people with Parkinson’s.
Initially (2015-2017) I took part in King’s College London Biomedical Research Centre (BRC) BioResource initiative project. This project required saliva samples and then led on to a telephone-based observational study (OBSERV-GBA study) that involved memory and thinking assessments by telephone.
Since this initial project, I have taken part in numerous online surveys for universities and
– In 2016, I took part in the Edinburgh Parkinson’s Scent Study (investigation of Parkinson’s body odour) with Dr. Tilo Kunath and Joy Milne, a woman with an acute sense of smell who can smell Parkinson’s. This study, which is still ongoing, involved providing sebum samples. In 2020, I arranged for Joy Milne to come to our group to talk about her interesting research and the latest developments, but this has been postponed due to COVID-19.
– In 2017, I organised a visit by the Parkinson’s UK Research Support Network (RSN) team to talk to our support group about the importance of research, discuss the latest research findings and explain how to take part in studies. With the help of Brian “the brain” model, the talk went down well and it sparked interest in research in the group.
– In 2018, at a research meeting organised by Liz Nash, RSN Manager, I was introduced to Dr. Doreen McClurg and I invited her to come to our group to talk about her STARTUP trial (Transcutaneous tibial nerve stimulation (TTNS)). STARTUP was a 12 week study looking at helping people with Parkinson’s who suffer with urine leakage. Doreen came to our group meeting in March 2019. I then took part in her trial which involved using a TENS (transcutaneous electrical nerve stimulation) machine for 6 weeks. This trial is still ongoing.
Since 2017, I have been a Research Champion for our group to further promote research and research opportunities in Parkinson’s. I have also been the group coordinator for the Helensburgh and Dunbartonshire Parkinson’s Support Group and have managed the growth of the group by changing the location from a hospital site, advertising the group and arranging for interesting guest speakers.
If you’d like to take part in research, please visit the Parkinson’s UK Take Part Hub, a post code searchable database of research studies recruiting participants either from home or in your region: https://www.parkinsons.org.uk/research/take-part-research