Looking back at my early blogs, I can now see how my passion for research was there from the start. I was involved in the launch of Join Dementia Research and they recently hit the 20,000 landmark of registered volunteers. However, we still need more people with dementia to sign up. I’ve just agreed to 2 new studies so now I’ve lost count of the number I’ve been involved with………so here’s my fourth reblog from my earlier ramblings…
Learning to Live Differently
Some people have said I’m ‘brave’ for speaking out so openly about having dementia. I don’t think it’s brave in the slightest. I’m not embarrassed by my diagnosis; I haven’t done anything wrong to get this cruel disease of the brain so why should I be embarrassed to talk about it? There’s such a stigma attached to having this disease. Yet why? It’s a progressive, debilitating terminal illness. We have to make people feel comfortable acknowledging and being open about having dementia. No good devoting more funding to research if researchers can’t find enough willing volunteers to take part. If people felt more comfortable acknowledging their disease, they might be more willing to volunteer for research.
Living well for longer with dementia is made possible through early diagnosis because it gives you the ability to develop strategies to compensate for the shortfalls you develop. I may still be able to write as though Alzheimer’s has never entered my world but I struggle with speech. So I have to work doubly hard to prepare for talks so I can fill my head with all the words I need to say. I prepare by reading the words many times over in the hope that most of them will remain in my head long enough for me to deliver them. On good days it works. Living with dementia is all about adapting – if you accept this, it makes it easier. People often say to me that I don’t look like I have dementia – not sure what I’m suppose to ‘look like’……but I live well even if it takes twice the effort to do things, cos if that’s what it takes, then that’s the adaption I have to make.
I compensate for not having much of a short-term memory by having my phone alarm set to go off when it’s time to take medication or appointment reminders; I have a monthly and weekly calendar and reminders on my iPad. I can’t drive any more as I’m lethal turning right, so I walk everywhere and if I need to go further afield I take public transport.
I can’t prevent this disease, but I can Join Dementia Research to enable me to make a valuable contribution to the lives of future generations and hopefully take away that inevitability a diagnosis currently brings with it for my daughters in the future. Research will lead to new treatments and hopefully the elusive cure but only if we can encourage people to see the value they provide to society and their children by taking part in research now.
I refuse to dwell on what I can’t do and instead focus on strategies to compensate for those I struggle with. Finding coping strategies at this early stage will hopefully help me to live well for longer with this cruel disease.