November 19 - Living well with dementia – Ken Clasper

At Ostrich we’re passionate about promoting awareness of dementia in all its forms. That is why we have invited Ken Clasper who suffers from Lewy Body Dementia to write a blog about his experience of living with the condition:

Being diagnosed with dementia

As someone living with dementia, I have sympathy for a lot of the comments I receive. The majority are from people who are frustrated with their diagnosis, as it can make all the difference between getting on with a new life or simply giving up all together.

Once my diagnosis was confirmed the first time round, I was given no support, medication or advice, but was told to simply go away and return in 9 months, by which time my condition had deteriorated. I was diagnosed at the age of 56 and shortly afterwards I lost my job as an engineer and my home. I therefore returned to the family home as my mother had just died.

Writing about my life to fight dementia

After losing my job I moved back to the family home, which was empty, and then discovered that the first hospital had lost my medical notes so I had to be re-diagnosed all over again, which was stressful.

However, my second consultant gave me a good piece of advice, and that was to keep my brain as active as possible as it could slow the illness down. This would then help me to remain as independent as possible whilst giving me the chance to do as much as possible with the extra time. She told me to go home and set up a daily routine that would help me get through the day, although by this stage I had already done it.

She also told me to begin writing my life's story as a way of keeping my brain active. By writing my life’s story other people like my grandchildren can learn about my early life, as many things were unknown even to my own wife!

This worked well and eventually it took over my life, I have really enjoyed writing about my memories even though they regularly come to me at the most inappropriate times such as the middle of the night!

I was also told to keep a diary about my problems and I chose to do it online in a blog called “Living well with Lewy Body Dementia”, not realising until it was too late that other people were reading it. However I realised that it was also helping other people suffering from dementia with their problems, so I have never looked back.

I would advise other people to do something like this if they can because you’re not only helping yourself, by keeping active, you are also helping others to understand that there is life after the diagnosis if you receive the correct support and guidance in the first place.

The importance of a strong support network and strong-willed family

It’s very easy to sit back and let the illness take over, and there have been days when I wanted to, but I have a strong willed daughter and wife who will not let me give in and that has made a vast difference and allowed me to stay strong.

I still enjoy my hobbies like photography on the good days, although I do not always remember the settings, but I get some very interesting photographs!

I understand that I was diagnosed at an early stage and had support and care, whereas other people have been let down, by either the medical services or their family and friends who walked away, and yes some of these aspects have happened to me. But these days I fight dementia all of the way so that I can enjoy the time available to me, and hope others do the same.

Live for the day as tomorrow is another day!