Welcome to Day 23 of World Alzheimer's Month - also referred to as Dementia Awareness Month in some countries. Today, we feature a DAI member from the UK in our #DAI #Hello my name is series of daily blogs for #WAM2018. Thank Tracey for sharing your personal story.
I love my life...
Hello, my name is Tracey Shorthouse and I was diagnosed with younger onset of Alzheimer’s Disease and Posterior Cortical Atrophy in 2015 at the age of 45.
I was relieved to get that diagnosis as I thought I had MS.
Like a bad nurse I was, I googled my symptoms and thought the worse. It’s a funny thing perception, what we think we can cope with and what we can’t.
I was working as a community staff nurse with the district nurses and I had started having problems about two years previously, with numerous falls, weakness down one side, balance problems, perception problems. Sometimes I couldn’t remember how to write numbers and I got behind on some paperwork. I got lost driving, I couldn’t remember how to drive a couple of times. It was scary stuff really.
The worse part was getting anyone to believe that there was anything wrong. In May 2015, I went into hospital because my Dr thought I had a brain tumour and the hospital thought I had had a stroke. I had numerous tests and scans including MRI and CT of my brain and nothing showed so the neurologist thought I was having a stressful episode and put me on Amitriptyline with no follow up and discharged me. (I have since found out that I did have a cerebral bleed back in 2015, but it wasn’t picked up, a brain scan last year saw an old bleed from that time) I went back to work, and my memory was getting worse, I had no clue what I was doing or recall things. I went back to my GP who told me I was wasting his time.
So, I went to see a different Dr and requested to be referred to a memory clinic. Which this Dr did do, and I went to my first memory clinic in June 2015. I failed this and took part in a second more in depth memory test in August 2015 which I failed. My speech was getting affected by this time and I couldn’t remember how to pronounce words. I saw the consultant in October 2015, and he told me that he suspected I had dementia but wanted to run through a variety of blood tests and scans to be sure. Which I duly had. I saw him again in December 2015 when he gave me my proper diagnosis. He started me on Donepezil and stopped the Amitriptyline.
I retired as a nurse in May 2016 at 46 years old
I didn’t quite know what to do with myself once I retired. I felt a bit lost. My consultant had arranged for an OT to visit me regularly and she got me into going to different groups to find out what suited me. I go to a group called SUNshiners monthly, and its part of the DEEP (Dementia Engagement and Empowerment Project) network. Through that group I started doing talks about living well with dementia, about bringing awareness that dementia affects all ages and that we are all different.
Then it snowballed from there, and I found I was travelling to London and going to conferences and talking there. It makes me feel like I have a cause, and it encourages me to keep fighting. I also researched my dementia, so I could understand it. And joined a support group in London which has helped immensely at times. With PCA the brain changes what the eyes see, so what I see isn’t always what is true. It’s a learning curve always. I stopped driving soon after my diagnosis as I went through a red light after my brain told me it was green.
I'm still very active
I now have fingers in lots of projects. I am a member of Dementia Alliance International, I am part of a task force to make all hospitals in the UK dementia friendly, I am part of LEAP (Living Experience Advisory Panel) to do with Admiral Nurses, I am part of the Dementia Action Alliance, I have a new project hopefully starting soon to do with gym, sports and dementia.
I go to a gym three times a week, I was seeing a neuro physio who encouraged me to join. I love it. I have a set routine which my physio and trainer devised. I go to a balance class run by physios to hopefully help with my balance for the future. I go to a writing and art group that’s nothing to do with dementia. Its important to be me Tracey over me with dementia all the time. I love my life. I do so much more since I have been diagnosed, than when I was nursing.
My ethos in life was to help others, and still I do that just in a different way, hopefully it will continue.
Tracey Shorthouse © 2018
DAI’s vision is “A World where people with dementia are fully valued and included.”