A Triple whammy day……

Yesterday normality resumed and September started with people going back to work and some children going back to school😊 and for me it meant the start of ‘doing’ and a busy month ahead.

Now most people, after a break, may have eased themselves in gently with just one event….mmmmm…..well I had 3😳 but all local.

The first one was at Humber NHS Teaching Foundation Trust and the monthly staff induction day. I attend this each month when I can along with staff from the Humber Research Team. We talk to new staff about their role in promoting research in the Trust.

Well today it was the turn of Lauren and Emma to be delivering the session along with me. Lauren kindly picked me up from home and we arrived at Trust Headquarters for me to be met by a lovely cuppa tea and catch up before we headed down. Just enough time for a piccie – Emma, Me and Lauren…..

We arrived to find Michelle Moran, Chief Exec, coming to a close which meant it was our turn next. The room was packed with new starters.

The whole point of this session is to show how easy it is for them to promote research to patients and the Research Team themselves will do everything else. My bit involves saying:

You may be sat there thinking, well what’s research got to do with me, it’s not part of my job? We have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, all coming on board and promoting research. To normalise talking about research would normalise involvement.”

A nice round of applause finished off the session before our time was up and it Lauren took me back home…..

The last two were both by FaceTime. Firstly with Vasileios Stamou from the ANGELA Project. The purpose of this research study is seeking to understand how to improve support for younger people with dementia and families/supporters.

Vasileios was calling me on Skype….on which I often get in a pickle……and today was no different. Once he called me at the agreed time, I couldn’t remember how to make him appear on the screen or how to let him see me🙄 so I just kept pressing buttons until something happened.
In the end he could see me but all I had was a frozen piccie of him😶 but at least I could hear him.
He only wanted to hear of the positive help I’d received from services, so I immediately said that wouldn’t take long as I’ve had no help from services. My help has been from Peer support and my daughters so we answered the questions using those examples.

I also spoke of the support from social media as that also plays a huge part in keeping my outlook positive.

Peer support is important because we support one another; we show each other what’s possible; we don’t judge; we share a common diagnosis and that’\s what brings us together

Social media helps me keep connected; helps me to communicate in my own time and by typing instead of speaking and it also helps me educated.

And finally my daughters are the most important influence and support. We’ve learnt to talk like never before. It’s important for them to have the same confidence in my ability for me to keep seeking challenges and new adventures. I couldn’t do any of this without them.

It was lovely talking to Vasileios and the ANGELA project is a wonderful study. More can be found here:

http://www.ucl.ac.uk/psychiatry/the-angela-project

My final chat for the day was with an American doctoral student, Jenny Heuer, from Atlanta, Georgia. Her dissertation is a qualitative study where she is interviewing individuals with early-stage Alzheimer’s disease.

When my book was published in America I learnt that they only know it as Early Onset and never use Young Onset, which is interesting.

Anyway Jenny agreed to FaceTime me at 5.30pm which meant lunchtime for her so suited us both. FaceTime is so much easier than Skype as people just appear and you don’t have to remember to do anything.
So it was that Jenny rang at the agreed time. She said:
This research is designed to gain greater insight into the experience, feelings and preferences of persons living in early stage Alzheimer’s disease”

Before we started we went through the consent form. She was saying that very little research has been done on the voice of those living with dementia. Most has been done through supporters or through the medical community.

We went through the ubiquitous mini mental test……before answering questions on the reality of living with dementia, how family, friends and the community see you post diagnosis and what I thought of the medical community….
Jenny shared with me her thoughts on the American viewpoint of medics and how we still had so far to go in educating – but America did seem to be lagging behind in so many ways. However, with the help of researchers such as Jenny maybe there’s hope of a catch up…..It was fascinating taking part in an American study. Lovely to talk to Jenny and hearing the differences and similarities that exist between the two countries.

I asked if she minded me posting a piccie and she was more than happy….😊

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

6 thoughts on “A Triple whammy day……

  1. A busy day Wendy. So glad everyone has returned from their summer break and you can get back into structure. You are an amazing inspiration. After reading your blog today if the medics in America lag behind the UK I dread to think what is happening over there. Support from “medical services” must be non-existent as ours is pitiful in my experience with my mum. You are working so hard to change that. Thank you xxx

    Liked by 1 person

  2. Good afternoon, Wendy. I’m ‘across the pond’, so I’m assuming that the “services” you refer to are from the medical/social services? Also, hearing what Jenny said about the U.S. being deficient in addressing these issues is disturbing. The way you avail yourself to educate, not only the researchers, etc, but others and their families living with dementia is a testament to your strength and your heart. Thank you. Have a wonderful day!

    Liked by 1 person

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