Learning to live life 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.

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

2 thoughts on “Learning to live life differently

  1. I’m still trying to figure out how blogging works Wendy … I didn’t realised til just now I had a very empty one already but you have inspired me to make a start to do some writing.. Love reading your posts and yes it’s curious how embarrassed we can get when talking about disease.

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