FROM THE FRONT LINE

A few months ago, I received an email from a guy in Liverpool.  He’d come across DOODAH.  This is what he wrote:

‘Just to let you know I think your site is a refreshing additive for those ex-pats living with Dementia in France.  I have Early Onset Alzheimer’s and campaign in the U.K. for better services and awareness. Keep up the good fight Sue, my best wishes, Paul’

ONE OF MY OLD STAMPING GROUNDS AND HOME TO PAUL

Since then we have been corresponding regularly and he has commented on DOODAH several times.

Last week, Paul’s response to ‘THE GAMES PEOPLE PLAY’ was long.  I felt it could make the basis of my next post. I’m keen to encourage input from those who are ‘on the front line’ – be they PLWD (People Living With Dementia), carers or those who, for whatever reason, wish to better understand the disease and its problems.

Paul is an extraordinary crusader and a marvellous example of how PLWD as well as others can help raise consciousness.

In 2014, at 63 years old, PAUL HITCHMOUGH was diagnosed with early-onset Alzheimer’s.   He’d been having persistent headaches and was becoming disorientated at work.  At the time, he owned two companies in the motor trade.

Divorced twenty years ago, he now lives alone but has a girlfriend who acts as his carer when necessary.  He has two sons who are very successful in business so he knows his five grandchildren will never want for anything and he need have no family worries.

Taken from my correspondence with Paul, here are some extracts about his life and work spreading the word on the problems of Living with Dementia:

‘I do my own thing, in as much as dementia lets me.  Good day, confused day, I take each as it comes and will fight it to the death, literally.

I have always been in bands in the singer/songwriter genre, playing drums/keys/guitar, and still sit in but I keep in the background.  I play solo now and then, although sometimes I forget what’s coming next but I get through it. 

Most of my music is about Dementia for fund-raising for Altzeimer’s Society and S.U.R.F. – a group of people living with Dementia and their Carers who help diagnosed patients along the pathway. Our S.U.R.F. group has won many awards.  It gives us a voice to make the public more aware of this terrible disease.

For Carers’ week later on in the year, I have a commission to record a song I wrote – ‘The  Carers’ Song’. I need a choir though so am hunting around. I am using the theme for Sibelius’s Finlandia for the melody, it’s not copyrighted so I am ok.  It’s a battle hymn turned into a mainstream hymn.  Seems funny me an atheist singing a hymn, but I often do being brought up on them. (Recently) I went to Crosstown Studio to record a jingle for my son’s company, didn’t take long, about 3 hrs, I played guitar and keys and arranged it, so good fun……………

Two years ago I wrote a play [as an amateur] which was performed at the Everyman small theatre for two nights. It was an ironic comedy about Dementia, performed by PLWD, and carers, it was a riot. I am visiting an old friend tomorrow in a (community) home, its very sad, he doesn’t recognise me but, I know him, and that’s what matters.  (I remember) he made everyone laugh when we did the play.  The community fridge always has Guinness at the right temperature, that tempers the sorrow a little.

TRAVEL HUBS WHERE THE HANDICAPPED NEED PARTICULAR HELP

Myself and another person [Tom Dunne BEM] who also has dementia, have developed a training programme for general staff of airports/trains and transport facilitators etc. We (present) it in many places using live comedy/videos and music and short plays to make the seminar run along without getting boring. We did a pilot at John Lennon airport [I live 10 mins away from there] and they loved it, word got out and so we have been invited to London/Manchester/ Crewe and Belfast to showcase it, plus we’ve been given a grant to develop it, so busy times ahead.  It’s a great focus to have.   We are pressing for funding. I am quite sure our presentation is innovative enough to be in with a shout,.

I have been at L’pool airport today as part of a design team to bring some training to their staff,  so it’s been a very eventful and successful (time).  We have had talks about improvements and innovations. I will keep you informed.’

And here is Paul’s comment on ‘GAMES PEOPLE PLAY’:

I read your last post with great interest, Sue. It’s my opinion as well as a proven fact that keeping the brain [mind] healthy and active does prolong the daily rhythm of life.

GETTING IT OUT OF HIS SYSTEM

The week I was diagnosed, my doctor in his infinite wisdom, sent me to a physical education group for the following week……The night before, I went as normal, to the local boxing gym and after training, did ten two-minute rounds open sparring with an ex-boxer.  I took my anger and frustration out in this session and he replied in kind, we went at it , bloody noses, black eyes, and we loved every second of it. I was buzzing and not a care in the world.  It took us a good 30 minutes to cool down and laugh at the absurdity, and probably danger of it all.!!!

So, the next morning I turned up for the physical education group at a room in a local Church.  Battered and bruised and not without a few strange looks. Introductions were made and I sat down with a heavy heart amongst other Alzheimer’s patients, and our hour began. It was pass the parcel, lifting hands above our heads, squeezing a ball.  I had to make my excuses and leave, I was fuming at the doctor’s decision. Obviously it was just a standard decree [maybe with the best intentions] to send me there as a patient.  But with the greatest respect, there are stages of the disease so I can’t understand his thinking in placing me there.  I got the notion in my head that I was getting thrown on the scrap heap. I honestly felt desolated and afraid.  It set me back quite a bit and I could not reconcile this action to be my future, and in retrospective respect for all parties concerned, it wasn’t for me or my life.

NOT FOR EVERYONE  

I chose to go down my own path, with research and trial and error, I am winning up to this point, but getting back to the main point, yes, in the latter stages of this disease, to be kept occupied is an important part of well-being.  I won’t say [living well], I don’t believe in that saying.  No-one with Dementia lives well, me included, but early onset, is much different, as I pointed out, than the other stages and each stage has different physical and mental attributes that need addressing on a personal and individual level.

I hope this hasn’t upset any one, or misguided anybody’s thoughts, I wished to get this off my chest as I still have flashbacks of it, and I have no intention of undermining or stigmatising the carers and medical staff or doctors.  They do their best, but I feel our GPs should have a little more training and understanding of the Disease instead of grouping everyone with Dementia together – some things suit us, some things don’t.  We are all different and unique, and yes, keeping the brain sharp and interested is a marvellous exercise at any stage, and one which I follow coupled with a strong, vigorous physical programme whilst I can………..

May your Gods go with you all , much respect and compassion and love to all the carers, if angels exist, then you are certainly one…….Paul

ONE WAY OR ANOTHER, WE’RE ALL ANGELS 

Thank you Paul.  It’s good to hear about your projects and to get an idea of how you’re coping.  We admire your determination and dedication.

SENDING POSITIVE ENERGY AND LOVE TO YOU AND ALL FELLOW SUFFERERS