Living well with diabetes, dementia and other conditions

Ernie has always been passionate about helping people. Despite the challenges that Type 2 diabetes, dementia with Lewy bodies and other health conditions can bring, Ernie is determined to stay positive and 'live in the light'.

A close up photograph of Ernie smiling at the camera

I spent a big part of my life, more than 20 years, in the Navy. Since leaving that job I loved, I have had to make a lot of adjustments to living ashore. For years, I was trying to find a job that I could help people.

My life was built on caring for others.

I have done courses on counselling, jobs to make activities more accessible for people with a disability, and I've put on activities for people in Sunderland over the age of 50.

I had to stop work after an accident, but I have always been involved in volunteer work, sitting on committees, starting dementia groups.

Addressing my health issues

I was diagnosed with dementia in 2014 but I also have been living with Type 2 diabetes for about 35 years, maybe longer.

After experiencing ongoing problems with it, I went to see a diabetic specialist who really listened to me. I was overweight and he altered my medication because of my circumstances at the time. I managed to lose about five stone as a result!

There have been lots of changes to my medication, but I am now managing to keep my weight stable. 

The medication for my diabetes can be difficult with my memory.

My mate phones me every night now to remind me to take my tablets and I get in the habit of taking them there and then when he rings.

All my medications have become harder to do but I try to put them into packs with the day written on to help me remember.

With my insulin injections twice a day I have specific places where the pen goes in the morning and at night, so it helps me cope with my forgetfulness. 

Learning to live well

You’ve got to learn to live with diabetes, like I am now with my dementia. I have got a list of things that are wrong with me. I could let them control me and feel self-pity, but I prefer to say ‘well, I’ve got to try my best to cope with it and get on and enjoy my life’.

I enjoy my life by helping others. Thinking about other people rather than myself distracts me.

They help me by allowing me to help them and that’s my way of dealing with things. 

About a year and a half ago, I was involved in the development of a sensory garden, for people living with dementia and other conditions, outside the local church. I really enjoyed it. I had some back problems, but I had to be steady with it. I made sure to take plenty of rests, but I could still be doing a full day in the garden at times.

One day, I woke up in the morning and felt really tired, it felt like I had the flu, but it kept getting worse. I could not do anything, and my motivation was gone. I just felt like I could not be bothered.

I phoned the mental health team and saw the psychologist who arranged for a consultant to come and sent me for some scans. They told me I had Lewy Body dementia, when my diagnosis was multiple dementias for a while.

Dementia with Lewy bodies can affect the dopamine levels of my brain. I'd just lost my 'get up and go', but I try and get on and do what I can.

How coronavirus lockdown affected me

The lockdown came after that, and it actually meant I didn’t need to make excuses for not going out.

It made me realise that I had been on full speed for a while.

Being in lockdown stilled my mind and made me more comfortable.

With coronavirus, I’ve basically had a year in the house. Since lockdown restrictions have eased, I’ve been back to the garden, but I need to build my strength and fitness up slowly to ease myself back into it. 

Sometimes it is hard trying to live with dementia, diabetes and my other conditions. But my outlook on life is you can either feel sorry for yourself, or you can live in the light and my faith has been a great help in that.

I say to myself ‘I woke up this morning, I’m still breathing, and I’ve got another day to torment people’. 

Do you have dementia and other health conditions?

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2 comments

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Well done Ernie. Was gd to read your blog. What a happy chappie you are, and so positive, it's not easy for you. You are Brilliant. XX

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Thank-you for what you sent, I appreciate you being there.

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