MORE FROM THE FRONT LINE

Back in May, I devoted a post to PAUL HITCHMOUGH, who has early-onset Alzheimer’s.  ‘FROM THE FRONT LINE’ was an account of how it feels to be living with dementia (LWD) and what he’s doing to help raise awareness of this dreadful disease.  Paul is truly an inspiration so I was happy to receive another missive from him in response to my post ‘LOSING OUR SENSES’.  I feel what he had to say is a post in itself and am taking the liberty of reacting along the way. So, over to you, Paul:

LEAF HAS A HAT JUST THAT THAT!

Hello Sue and fellow writers, [I still dont know what a blog is and dont wish to know], any way, I digress. I will have lived with Alzheimers now for 5 yrs this coming Christmas, and yes, I am indeed one of the lucky ones, or am I?? People LWD are all different and unique, I am 68 in march and through my research over the years, have found my pathway [from the very beginning] is my 90% vegetarian diet and a strict jog/walk/cardio session 6 days a week, I know in the future I may not be able to do this stringent exercise, but then again, I have great hope in what I am doing is right for me to elevate my daily status and maybe a rejuvinating process for my longevity . I have met people who have had this disease for 15 yrs or more, they seem to be the [doers] not the static type and that is where I get my inspiration from, maybe my brain can try to fix itself, maybe the fresh blood flowing up to it releases something , just like a car needs fresh oil to keep it running ok, maybe the physical side is the answer, at least it is working for me at the moment, along with the red wine of course. I do lead a bit of a Bohemian life I suppose, I no longer have any inhibitions and indeed, I have my music and books and crosswords etc, so every day is taken up with something or other.

I agree, Paul, keeping busy both mentally and physically, is all-important, not only for morale but also because dementia is, quite naturally, a huge threat to self-esteem.  Having projects and hobbies or favourite pastimes, is good for us all, of course, not just those who are losing their faculties.  I was interested in your comment about no longer having any inhibitions.  Leaf is the same, he doesn’t hide away in shame, if he can’t manage something he’ll say so, or if someone behaves in an insensitive way, he will pull them up about it!

WALKING – GREAT EXERCISE ESPECIALLY IF BAREFOOT

It will come as no surprise to you that I completely agree with your lifestyle choices.  Looking after yourself well is all-important and, who knows, your routine could, one day, bring unexpected positive results.

Any way, just to pick on a few points mentioned above, in general terms, any thing black within the Dementia spectrum is generally a no no situation, black carpets make me uneasy and I could not eat of a black plate,my senses tell me the colour of a plate is white so I automatically know what it is, any dark carpets or wall paper etc generally gives me a bad feeling of falling into a hole, I have experienced that several times, always light, neutral colours are infinitely better.

What you say about black explains a lot to me.  Leaf carries a torch with him and he likes to be in a well-lit room.  Fine, no problem, except that he goes round the house turning all the lights on.  I get a lot of exercise as a light-turner-offer as well as a finder of objects – books, that torch, his hat, the dog-lead and more!  Oh, and he likes to shut doors too.

DARKNESS DOES NOTHING FOR THE SPIRIT

And Susan, forgive me, I had a chuckle when you mentioned electronic music, that style would kill me off completely, when my kids listen to it ,I tell them I am in virtual hell, its horrible to my senses, all the people I know LWD , leave the room en masse if a rap or electronica is played, we are out the room like a shot. My fave pub in Liverpool where we congregate plays 60,s stuff all day, and therein lays a secret, some of us cant remember our names, where we live, and drift in and out of the mist, but , we can remember every word of every sixties song, who sang it, it goes on all day, so there is a lesson to be learned there I am sure.

THE PHIL, AN OLD FAVOURITE FROM MY LIVERPOOL DAYS

As for the electronic dance music, I agree with you, but apparently it raises the serotonin level!!  Rap, I loathe it.

Is the pub you’re talking about the Phil??  I can just imagine a group of 60’s devotees singing their hearts out.  And if I were up in Liverpool, I would certainly come and join you.  Brilliant.

So all last week, I have listened to Vaugn Wiiliams /John Barry/John Taverner and Thomas Tallis/Mascagni/Barber [not Chris] Morriconi and my fave Debussy, [although I love yamashta’s version of the electronic Arabesque]

Seriously highbrow stuff, Paul.  My tastes are somewhat less sophisticated but I would like to suggest some musicians both Leaf and I never tire of listening too – Pharaoh Sanders, Ernest Ranglin, Leo Kottke and Jan Gabarek. There are others, of course.

So Susan and all my fellow contributors, that is where I am up to in my life [hate the word ” journey” ] I hope I havent offended any one and I hope Leaf is well and coping,and to my brothers and sisters who are LWD, or are carers [the hardest part I feel], I hope your Gods go with you, peace and love, Paul [ LIverpool]

GETTING OUT AND ABOUT IS VERY IMPORTANT TOO

I’m sure you haven’t offended anyone, Paul, and, thank you, Leaf is well and spending lots of time painting.  Today is his birthday and he’s had several very useful presents – encouragements to keep him at it!

Thank you for your good wishes to all those who are living with dementia and their carers.  Love and peace back from us – Sue and Leaf

ps blog is short for weblog, basically a sort of online journal