Research Participation… stretching my memory!

I have just signed up to participate in a research programme about Environment and Genes. To start I have had to complete several surveys on a number of topics. It certainly is very thorough!

The detail of the information they seek is huge and have really stretched me at times. One of the first things I had to do was to list every job I have had in my life that lasted more than 6 months. Given that I am soon to turn 62, that’s a lot of years to cover. I have endeavoured to do my best and to be as correct as possible in my responses, but it has certainly been a challenge. They also wanted to know about exposure to certain environmental factors and how much exposure I thought I had had.

Another set of the questions related to types of food eaten and in what quantities. I won’t go into all the types of questions, but as I said before the questions were quite challenging at times.

One question though was something along the lines of ‘in the past month have you had any impulsive spending?’ or words to that effect. At the end of that batch of questions, there was space to comment. My comment was to point out that I am completing the questionnaire in January, which of course means that the past month encompasses Christmas. I admitted that my husband had asked a similar question of me himself, but that while I acknowledged that I had been rather impulsive leading up to Christmas, that this is normal behavior for me at this time of year. A time of year when my Credit Card suffers! I don’t think my medications or Parkies have had that much influence on this behaviour and as I said to my husband ‘how would you be able to tell?’

There are many parts to my involvement in this study and it will be ongoing for sometime. Included in this will be some interviews, so that should be interesting. I do wonder sometimes if having lived in Rotorua – well known for sulphur fumes – from age 5 years to age 18 years, might have had some impact on my risk factors for Parkinson’s. But that could be said of all the inhabitants of that city!

It will be interesting to be involved in this process as it goes along and I hope that my personal contribution helps others in the future.

This is a New Zealand study and they are keen for more participants. Click the link here for more information.

To participate in the study, please visit https://nzbri.org/pegs/ to complete the consent form and online questionnaires.

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

4 thoughts on “Research Participation… stretching my memory!

      1. Ah, no, mine sounds very similar but it’s the Australian Parkinson’s Genetics Study, through the Queensland Institute of Medical Research. Long survey and a saliva sample for DNA.

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      2. Yes, sounds similar. I am going to have to provide a saliva sample too for DNA and also there will be an interview on something like Zoom or something similar.

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