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Service user describes his experience of being diagnosed with dementia
27/11/2017

"The road through a serious illness is a rocky one and no two person’s journey is the same. When a diagnosis is made, it is a considerable shock. We don't anticipate this shock and when it comes it is desperately sad, both for the family and of course especially for the individual.

"I was confronted two years ago with the label Lewy body dementia. I have to say that this particular form of dementia is not the most widely understood; even spelling it is a problem!

"All dementias are serious, but we have been wonderfully blessed on our journey by having a team of marvellous medics. These specialists have been able to come to our house for every consultation. Yes, the NHS is often criticised but mark this, they come to our house on every occasion without the need for us to go to the hospital.

"One of these specialists, Justin, from the Julian Hospital in Norwich, has always been honest but also encouraging as we progressed; always at the end of a telephone and always there when we needed his advice and support. He mentioned that some people with Lewy body dementia continue to live well for many years.

"I am particularly fortunate that my dear wife worked as a health professional and can understand 'NHS speak’ and has been able to help me to get to grips with patches and medication. My dear sister has also been an invaluable support.

"At our first meeting with Justin, I suggested that I would hope to continue with as much normality in my life as possible. Justin thoroughly endorsed this. The following are a few examples of the activities that I am still able to enjoy: I go away on holiday and I have taken up clarinet lessons again after many years.

"As a published author, I have continued to enjoy writing and have written a children's story since my diagnosis (any offers for publication?!). I have continued to enjoy my music, going to many concerts and once a month my wife and I travel by bus and train from Sheringham to Bury St Edmunds where our local Elgar Society give their concerts.

"I have been able to benefit from attending the Aylsham Cognitive Stimulation Therapy program me.

"The Holt and District Dementia Support Group have also helped my wife and I. We attend the weekly Poppy Cafe where we have opportunities for regular friendly meetings and targeted activities. As part of the help offered by the support group, I have also benefitted from having weekly visits from any one of three volunteers. They have helped in all sorts of ways but in particular in cataloging my large collection of RSA magazines. The volunteers have also helped me sort my sheet music; a collection of antiquarian books and have helped me to sort out and label many photographs. While all this is going on my wife goes out and enjoys a game of tennis at the local Tennis Club.

"Inevitably, as with many conditions, there will be ups and downs, but perhaps the secret is to grab hold of the good days and enjoy them. Maybe the number of good days will surprise you.
I wish you good health!"

Alan Childs, Sheringham, Norfolk