Sean's story

I wish I did not have to put the bins out…

Back in August 2013, after a one-year diagnosis period, I was diagnosed with Parkinson`s disease.  It changed my life in so many ways, including my work.  I was a professional driver and had my PSV licence revoked due to my diagnosis. which turned our household upside down financially, emotionally, practically in so many ways.  I have a wife and two children both of school-age.

Then in 2018, I started forgetting things, putting washing in the wrong cupboards, forgetting appointments, one-time I was unable to remember where I had put my car at the supermarket and had to seek help from the staff. 

After a doctor’s appointment where I raised my concerns, I was referred to the Memory Clinic. After two extensive memory tests and blood tests, I saw a consultant who in July 2018 gave me the diagnosis of Parkinson's dementia.  Again, this came as a real shock.  Even if you know something is not right, you do not expect to hear that at my age.  I am 51 years old. 

After a period of I would say mourning, I pulled myself together and started thinking of how I could best use my time to benefit myself and also others.  I reached out to YoungDementia UK who were incredibly helpful.  About two weeks later I received a newsletter from YoungDementia UK which included an advert for a new Channel 4 programme about young onset dementia and work; so I applied and was successful.

I joined 13 other people with dementia, all varying types and stages, in what I would describe as one of the best things I have ever been involved in.  The Restaurant That Makes Mistakes was a pop-up restaurant in Bristol with Michelin star chef Josh Eggleton as our mentor.

We were trained up in various roles and we worked in the restaurant for five weeks - dealing with the day to day running of the restaurant. with the care and leadership of Josh.

We managed to learn new skills; even how to put together and complete outside functions.  Through the whole process, I felt I had a purpose to my life.  I made 13 amazing friends we have all become close and kept in touch since the programme finished.

I have to say that I think that The Restaurant That Makes Mistakes is going to have a massive impact in a positive way on awareness of young onset dementia.  Channel 4 have done an amazing job editing the programmes.  From deeply emotional moments, straight into side-splittingly funny moments, so you go on something of a rollercoaster ride of emotions.

I feel I must clarify my statement at the beginning – I mentioned I wish I did not have to put the bins out.  I am not advocating that it’s not my job, or its beneath me to put the bins out, it’s a reference to feeling some worth of working because I had no time to put the bins out.

My hope with the programme is that it will

  • challenge people with dementia so that they may be able to go back to work, or at least explore the idea  
  • help prospective employers believe that people living with dementia have much to offer the workplace
  • give other people living with dementia hope, so they won’t have to say, ‘I wish I did not have to put the bins out’ too.

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