When I was diagnosed with Alzheimers, the first web site I logged onto was:
I immediately joined the society and sent off for many of their marvellous, no nonsense, self help booklets – my postman wasn’t happy with me for a few weeks! I watched many videos of people who also had dementia and listened to their stories and I no longer felt alone. Everyone has a different experience of dementia, but the fact that we have dementia seems to bring us together.
The information I found on this website in the first month was so critical that I began to think what I could do to help them. I then came across:
This was my first ‘WOW’ day since diagnosis – you’ll get to hear about others over the next few days. It was the start of many opportunities I’ve been given to work with the society. They have a strong network of 250 Research Volunteers, ( and are always looking for more!), to comment and give their views on funding applications. This gives me the opportunity to influence and encourage research into dementia – from the perspective of someone with dementia.
I had a wonderful training day at their headquarters in London. I met some very warm, inspirational people – carers, scientists, researchers and those with a general interest in dementia research. Everyone had different reasons for being there, yet we all shared a common goal.
We all have the support of regional coordinators. My coordinator, Barbara, has been with them from the start, is very knowledgeable and a great source for information and support.
Since joining I’ve been asked to comment on various other proposals via email. I’ve had the pleasure of talking to Professor Jan Oyebode from Bradford Dementia Group at Bradford University after she asked me to comment on a draft proposal before submitting for funding.
When would I have had the opportunity to ‘give my opinion’ on research papers if I hadn’t been diagnosed with dementia. Out of every tragedy can come something positive if you go looking for it.