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Thursday, 20 October 2016

Living with Cognitive Impairment

"you don't need money to do good for others you just need time"

I’m not just a “faceless” blogger, writing for the Edith Ellen Foundation, the values and ethos of the Foundation and its Founder Kate are very close to my heart.  I was diagnosed at 21 with a mild cognitive impairment (MCI), and I’ll not lie I literally thought my life was over.

I shut myself away and literally hid in my little bubble, lost all my confidence and refused to go out into the world. I lost friends and couldn’t make new ones I was literally stuck on a merry-go-round that I couldn’t stop to get off.  But honestly I don’t think I tried to stop it either.

I was in a permanent state of enervation, the just trying to be “in control” was tiring.  And of course the hiding away from everyone was depressing and exhausting.

So little is known about MCI, even today.  Approximately 1 in 10 adults have some form of MCI problems with memory and/or other thinking abilities that exceed those associated with normal aging but fall short of more serious impairments experienced by people with dementia.  It’s expected in the over 60’s range but rare in someone so young.  Mine was essentially caused by trauma, damage to the front on my brain, where recall occurs.

I found myself unfortunately in an unhealthy relationship, my every thought and movement was monitored by my partner and my everyday was life was dictated to me by my partner.  In 1998, during a party with friends, my partner pushed me of a balcony and I landed on my head.  Had, my friends not moved me, and had they called for an ambulance straight away, my life could have been very different.

My dad allowed this self-pity to happen for about 3 months before he decided that if I wasn’t going to help myself then he was going to “force” me back into the real world.  He arranged for me to go back to college and have tutors support me. He set up a daily schedule I could easily follow but that flexible enough to change should I need to.

I still suffer from mood changes, I can literally be on top of the world and everything is perfect and rosie then snap I’m moody, snappy and irritable.  My memory slips constantly and I struggle to maintain concentration, I suffer from anxiety and panic attacks.  But I’m lucky.  It’s taken 16 years to be able say that but I am, very lucky.

While public knowledge about dementia has grown exponentially in recent years, this is not the case for MCI. It is important for people to know about MCI, both because MCI is a risk factor for dementia, and because a growing body of research is identifying ways to improve functioning and reduce that risk. In other words, those who are aware they have MCI early on can start taking action to optimize their brain health and perhaps even decrease the chance that their cognitive problems worsen.

In 2015, I met by chance a wonderful woman whose ethos and values are core to The Edith Ellen Foundation this was Kate our founder.  Who understood that I had limitations but accepted them. 

We don’t always agree 100% of the time and we argue like mother and daughter. 

Because of my MCI I haven’t the capacity to make my opinion understood in a way that someone else may be able.  Sometimes, I can come across as “brutal” in expressing my opinion. 

Just the other day, Kate and I disagreed over and article I had posted, but I felt it was important to be able to 1. Stay impartial to the media discussions but 2. also provided both sides of the discussion to enable people to make their own decisions. 3. I felt it was important that we maintain this impartiality to ensure we weren’t encroaching on people’s rights to make a choice free of our personal thoughts and opinions.  However, instead of my being able to say any of that I just argued, I said “no, you’re wrong, you need to stop.” And then I would not listen to the reasoning behind why Kate felt differently, because my MCI had already switched my brain off.

I am lucky though, Kate understands and rather that open up the discussion there and then she demonstrates compassion and tolerance.  Where do you find truly find that in the work place, a boss that literally understands when to show kindness, compassion and tolerance above being a manager or CEO.

That is why I support The Edith Ellen Foundation.  Because their vision is not just Kindness in Care, something to say.  Their belief in the provision of outstanding care and that it should be the objective of every provider; the receipt of outstanding care should be the right of every individual who needs it, is not just a simple by-line.  They genuinely live it and breathe it.

So please get behind the Foundation, support them to enable them to make a difference, share this blog their facebook page and twitter @edithellen2013, donate to the charity or just keep reading and liking.   
As my grandfather used to say "you don't need money to do good for others you just need time".
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