Monday, 24 April 2017
It’s not widely talked about, MCI is often over looked because people like me can live relatively normal lives.
This is me, I was diagnosed with MCI at only 22 years old and I have had to relearn how to live my life despite it.
I first started displaying symptoms when I was 18 years old, and my GP actually said to me it was all in my head and prescribed antidepressants. The symptoms I started with were relatively small individually you’d not recognise a connection but when listed together it became obvious that there was an underlying issue.
· I started to forget things more regularly than a normal person
· I was missing appointments and engaging with friends.
· I would forget what I was saying half way through saying it, this was made worse by not being able to recall words I needed.
· I suffered awfully with anxiety (I’ve still not learnt to manage this)
· I became overwhelmed by things like making a decision or a change in my routine
· I was (and still can be) irritable all the time, small issues became massive issues.
So, what is MCI?
MCI is Mild Cognitive impairment and it is an intermediate stage between the expected cognitive decline of normal aging and the more-serious decline of dementia. It can involve problems with memory, language, thinking and judgment that are greater than normal age-related changes. So, to be symptomatic at 18 was unusual, but not unheard off or rare.
If you have mild cognitive impairment, you may be aware that your memory or mental function has "slipped." Your family and close friends also may notice a change. But generally, these changes aren't severe enough to significantly interfere with your day-to-day life and usual activities.
Mild cognitive impairment may increase your risk of later progressing to dementia, when I visit the doctors now this fact is written all over my record in red. Dementia is caused by Alzheimer's disease or other neurological conditions. But some people with mild cognitive impairment never get worse, and a few eventually get better. I have really good days when I am literally a fully functional member of society.
Despite the MCI I have held a career, I started out nursing, moved to Admin and became a Senior Administrator within the NHS for both the Adult and Children’s Safeguarding Teams. I have married and I have two gorgeous little boys (Blogger Babies).
Increasing Cognitive Impairment
Sadly, my MCI is actually getting worse. My father (Grumpy) has had to move in to support me. I know rely on having a routine and lists for everything.
· I make lists of everything I have to do, these are stuck to a door in the kitchen so that I can clearly see them. I also have a menu for the month planned so I know exactly what we are eating and I can plan accordingly.
· When I have to learn something, new I write little help guides – an exact step by step process, which has become useful when I temp as the next person can come in and pick up where I left without too much difficulty.
· I have the same daily routine which I stick to, small changes to the routine can send me into a complete melt down.
· I have people, friends and family remind me.
How I feel about MCI
MCI, when I was first diagnosed I was lost, I literally thought that my life was over. The plans, hopes and dreams I had for the future were now out of my grasp. I wallowed in self-pity for about 6 months, until my family and friends became tired of the same old same old and started demanding I do more. Get of the house have some fresh air…
My life isn’t over, it’s taken about 15 years to appreciate that fact. The odds are good when you think that only about 10-15% of people with MCI progress to Alzheimer’s. I appreciate that there is still a chance I could be one of those but it’s not happened yet so I’ll worry about that when I get there (if I remember!!). And the Mayo Clinic article states that some people actually get better.
In England, according to Ken Clasper, who was originally diagnosed with LBD and then, after 10 years, was re-diagnosed with MCI, the National Health determined that those with diagnoses of dementia who were still able to function at some higher level were reduced in their diagnosis to MCI. While perplexing, it does make sense on some levels. There are other issues this brings up, but for the purposes of this blog and post, I’d like to keep it simple.
What I can still do…
I like to think that I can still do all the things that really matter, I enjoy spending time with friends and family. I might forget to call and it might be months before I do but luckily, I have brilliant friends who just pick up as if we spoke yesterday.
I write this blog, and I support a fantastic charity – The Edith Ellen Foundation, hence the name of this blogspot. With their support and guidance I can raise the awareness and profile of MCI.
The Edith Ellen Foundation are campaigners and world changers, they are working to ensure that Care in homes and the community is given with kindness, dignity and respect you can follow them on twitter @edithellen2013.
More need to be done to get awareness and understating of MCI out into the world. More information needs to be given and more recognition than it has at present.
All most everyone knows about Dementia and Alzheimer’s and there are dozens of charities out there raising awareness for them, MCI may not be dementia but it does still involve memory and day2day living.
I feel my own Dr treats me with contempt when it comes to this illness because so little is understood and Dr’s are not willing to look further to explore the cause of it.
Is there anyone else out there?
Sometimes I feel truly alone with this diagnosis, I’ve never found a support group – there are thousands for the individual issues like counselling for the depression and anxiety but nothing that covers the whole diagnosis.
I would like to be the person who raised the awareness of MCI by sharing this article you too can help make that change and raise awareness.