Memory Walk – Sean Mackell

Sean Mackell, who is a member of our Irish Dementia Working Group (IDWG), writes about his dementia diagnosis, being open about his diagnosis and why he’s taking part in Alzheimer’s Memory Walk this year

Dementia does not play fairly. It steals up on you and suddenly it is there looking at you in the face. I was in a busy job as a Trade Union leader, 64 years old and pretty lively. I had spent a lifetime negotiating, arguing, supporting and advising members. I noticed nothing in the months before my diagnosis.

My wife, Mary, had noticed that I was “not quite right”. I was becoming forgetful, easily distracted and not quite myself. It was she who asked me to see the doctor and it changed my life.

The diagnostic process was straight forward enough. I had a brain scan and a consultation with two specialists and in the blink of an eye my life had changed. The consultant told me that I had Alzheimer’s. There is no cure. I had walked into the hospital, but felt as though I was limping out. Most of what was said went over my head. Were they really talking about me? I was glad that Mary had come with me.

(A little tip – bring another person with you to the conversation with the consultant/doctor. I cannot really remember much of what was said to me but thankfully Mary did, and she was able to tell me everything later. I only heard about 50% of what was said!)

The next week is a complete haze. What was I to do? I have always been a fighter and once I settled myself, I decided to do as much as I could for as long as I could. I started by telling my family and friends. All were shocked. “Are you sure? You cannot have Alzheimer’s” to “you owe me a million Euro”…. I was not that far gone, and we all enjoyed the joke. Good friends and good fun is allowed.

Telling people around me worked well. People and communities were very helpful. I live in a small town and I have noticed that the staff in one of the shops takes time to help me pick my fruit. She is aware of my condition and tries to help. I am well able to pack my oranges, but I appreciate her little act of kindness.

We need to talk more about dementia and be upfront about it. I hope to have many happy years in front of me. I want those years to be full of fun and happiness. Upbeat is a lot better than downbeat.

I now really enjoy advocating for myself and other people with dementia as part of the Irish Dementia Working Group (IDWG) which is supported by The Alzheimer Society of Ireland.

Lots of people are living with Alzheimer’s and need help and support. This year we are having a ‘virtual’ Alzheimer’s Memory Walk on Sunday, 20th September to raise funds and awareness for The Alzheimer Society of Ireland to mark World Alzheimer’s Month.

This is a great family friendly series of walks that are taking places all over Ireland. The ASI really needs the funds to continue to provide and improve their vital services. There is not a lot of money around, but we have big hearts and I know people will be generous.

I will be walking in Enniskillen starting at the Round ‘O’. I will start at ‘high noon’ on Sunday, 20th September, so if you fancy a stroll around a small part of beautiful Lough Erne then join me and let us all raise a few bob for Alzheimer’s while adhering to social distancing guidelines of course!

Two years on from my diagnosis and I am still going strong. I have some bad days but then who doesn’t have bad days. I know that I have a difficult future ahead on me but that does not mean that I must give up now. I still have my friends, I play golf (badly), my friends look after my scores, so I do not have to worry about marking the correct score. I have only met helpful people and good friends.

Of course, some people prefer to face the struggle alone. That is there decision and I wish them well. Whatever works for you, is the right thing to do. I would urge all concerned, those living with Alzheimer’s and their care partners to approach their local Alzheimer’s group or failing that contact the national organisations who will direct you to a local group. There is life after diagnosis, there is still lots of living to do and lots to enjoy. I wish you well in your journey.

Alzheimer’s Memory Walk is taking place on Sunday, September 20th – For more information, click HERE

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