On day two of World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of his life and living with dementia. Thank you Howard, for allowing us to share it here, and for and actively being involved in one of our peer to peer support groups, as well as representing DAI as an advocate in the UK.
Hello, my name is Howard Gordon.
I worked in healthcare for nearly 20 years but at the beginning of 2014, I began to notice changes; I was forgetting regular tasks, getting lost in familiar places, getting confused and doing things out of character.
I moved from Acute Medicine to Outpatients in 2015 as I realised I could no longer safely work in a ward based environment but the challenges continued to grow.
Although I had plenty of Dementia training over the years, it wasn’t until I saw a television programme about Chris Roberts and his family that alarm bells rang.
I went to my GP and she did blood tests including checking my Thyroid but when I went back the next week the tests were clear and after cognitive testing it was her opinion that I may have Alzheimer’s.
Three months later I saw a Neurologist and over the next 6 months I had MRI and SPECT scans, more blood tests and four and a half hours of Neuropsycholgical testing and during this time my Fathers cancer came back after 26 years.
In March 2017 came the diagnosis, younger onset Alzheimer’s and Frontotemporal Dementia, two leaflets, some information about research, instructions not to drive and to go home and make my Will and Power of Attorney.
As we walked out of the room there was nobody there and so it would be for about a year.
During 2017, one of my daughters and Grandson nearly died of Carbon Monoxide Poisoning, my Grandson had a cancer scare, my Father passed away and in September I was signed off work and my neurologist said she didn’t know how I was still standing.
I began to engage on Twitter receiving support and encouragement from around the World and by March 2018 I decided that I would have to find my own way through my journey with Dementia and it was through Twitter I found out about the A Good Life with Dementia course run by Damian Murphy of Innovations in Dementia CIC.
Originally, my wife and I only went for one session but it was like a light bulb moment for both of us. In two hours there, we went from Prescribed Disengagement to finally being engaged with life again. With Damians agreement I went along for the rest of the course, even though it meant undertaking a 130 mile round trip to York.
I had begun my blog just as a record of my journey before the course but after it began to expand into support, information and articles about topics relevant to Dementia.
The second important moment was joining Dementia Alliance International (DAI) a fantastic community, more like an extended family with weekly online support groups and regular Webinars.
DAI has given me the courage to challenge poor practice and abuses in healthcare, to speak out about our rights under the United Nations Conventions and to engage in dialogues with organisations.
DAI also gave me the opportunity to attend the Global Disability Summit in July where I was able to challenge Politicians face to face and have now been invited to be part of the Summits Partnership Forum.
Hopefully, I still have a long journey with Dementia in front of me but I hope that with the support of my extended family of DAI and others, I can continue with the work I am doing for some time to come.
I will always be grateful to the course in York and to the support and opportunities that Dementia Alliance International have given me.
Howard Gordon © 2018
Howard is very actively involved as an advocate; he is an active member of Dementia Alliance International, and he is also a member of the following organisations or groups:
Alzheimer’s Society 3 Nations Dementia Work Group
Alzheimer’s Society Research Network
WEGO Health Patient Leader
Global Disability Summit 18 Partnership Forum
DEEP UK SHINDIG Group
Disability Rights UK
Royal College of Psychiatrists Memory Service National Accreditation Programme
South Yorkshire Dementia Research Advisory Group
Young Dementia UK Network
Young Onset Dementia & Alzheimer’s (YODA) UK
Research Participant and Steering Group member
Admin “Living with Dementia” Facebook Group
Follow his blog: When the Fog Lifts