Jennifer’s story

Jennifer ButeJennifer Bute from the UK has become a wonderful friend of mine; we met at ADI London last year, and like me and Richard Taylor, she is fighting the symptoms of dementia as if it is the Olympics race of her life.

Dementia from the inside is her story; Jennifer Bute. She is using her situation to educate and encourage others as you can see from her website where there are some excellent videos.

Read more of her story, published in the Daily Mail.UK I knew I had dementia. So why did tests say I was OK?

Jennifer’s story (below) was originally posted on Global Dementia Voices, a blog that simply did not spread its wings, and so I have asked permission to reprint it here.

“Dr Jennifer Bute, Fellow of the Royal College of General Physicians, lives in Somerset in a Dementia friendly village. She worked in Africa as a Doctor before working as a GP for 25 years also training medical students and Doctors. She resigned as a GP 7 years ago as she knew things were not right and was diagnosed 3 years ago with Alzheimer’s Dementia.

I now know illness can precipitate dementia but I did not realise that in August 2004 when I had a ‘mini stroke’ I lost the use of my L arm and was sent to the TIA clinic. I continued working but began to get seriously lost when visiting patients so I just bought a satnav eventually needing it to find my way to our branch surgery or even to get home.

In January 2005 I had a bizarre episode when I did not know what to do with my shopping in the  supermarket and this alarmed me sufficiently to return to my GP who referred me to a neurologist who said there was nothing the matter with me implying  I was attention seeking when I said I did not recognise friends and neighbours . I decided to find more ways to cover up problems and remain safe. Later I had a gas leak check done on our house and the drains checked at work not realising I was having olfactory hallucinations. I could no longer lecture from memory so I started using Power Point Presentations to help.

My defining moment came at the end of 2005 when I was chairing an important Case conference at work, I did not recognise colleagues I had known for 20 years and persisted asking them who they were and why they were there. So in 2006 I agreed to see a 2nd neurologist who was surprised I had had no investigations. The neuropsychology consultant said I did indeed have problems and was not sure I was or would remain safe professionally My patients and high standards were paramount so I resigned. The neurologist said the abnormal results were of no significance.

By January 2008 . I developed auditory /visual hallucinations hearing children screaming babies crying & was seen conducting conversations with non-present people  I wrote myself detailed instructions on how to make a cup of tea, put washing powder in the washing machine I would have to be reminded to cook meals and might cook supper twice on the same day. One day I did not recognise my husband. I knew I had dementia.

In 2009 the 2nd neurologist was very annoyed I had resigned from work. I could no longer read easily and when the insurance company spoke to me on the phone I thought they were speaking Chinese. I had another neuropsychological assessment and it was such a relief when it was explained I used non verbal and contextual clues to work things out my intelligence enabled me to cover up and was sent to Peter Garrad who I found on the internet had done work on iris Murdoch and Harold Wilson so when he told me in 2009 I had Early Onset Alzheimer’s I was just so relieved.

He started me on Aricept which caused terrible nightmares but we found ways of coping and later memantine, within 3 months my family were amazed at my improvement I am able to talk (unless tired) most of my hallucinations went. although they have now returned and often shake my sense of reality However I passionately believe there are ways round problems  and we can even reverse some of the decline. I have started a memory group for folk where I live based on the Japanese model of using the three R’s ( Reading wRiting and aRithmetic) with amazing results.

The spiritual never dies I have no fear of the future I know exactly what lies ahead. For me my Dementia is an unexpected gift a wonderful opportunity and great privilege. My husband was a great supporter until he died unexpectedly last year but I have a wonderful family, 3 married children in various parts of the world My networked computer is my back up brain I can’t manage the phone but I can emails and Facebook as they have visual clues.

My father had dementia so I understand a carers perspective too Where I now live there are many who walk this path and I am always learning and finding new ways to cope  My son makes my dvd’s and has set up a website gloriousopportunity.org where  everything can be downloaded free. There are no rainbows without rain!”

Note: Copyright © for this true story belongs to Jennifer; published with permission.

4 thoughts on “Jennifer’s story

  1. Pingback: Stand up and speak out… « Creating life with words – Inspiration, love and truth

  2. What a truly frightening disease! Of course it doesn’t help that Chemtrails are dumping massive amounts of aluminum into the air that we are all breathing on a daily basis. Truly evil indeed. What a wonderful woman Jennifer is. I am just sorry she and so many others are suffering the ravages of this disease. Keep hope alive my friend! VK

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  3. …disgraceful treatment and it seems to be a general, worldwide problem……I went through the same thing from 2003 till 2007, when I finally got treated by someone who could recognize there was something wrong with me and I was NOT putting it on………boy, did I struggle through those 5 years…my family, still to this day reckon that I “did” this just to get an early pension, and are ashamed of me because I am a “dole cheat”…….how on earth does one overcome that perception.???….

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