The Lewy Files - A Demented existance ... 1

It's been a long time since I've called in here... 8 years to be exact and couldn't believe it but the World Cup was the highlight of the news back then too - even though we've just been knocked out by Croatia ... hindered greatly by a referee who was visually challenged and forgot he had red and yellow cards and more importantly how to use them. Would it have altered the outcome if he'd done his job properly... probably not, but it was lovely to see the England squad get as far as they did.

I was going to say a lot has changed in 8 years...but I am still sitting in the same home, still not affluent and still dreaming of a home with a beautiful garden and not worrying about the bills. I care a little less about many things in life but only those I shouldn't have disturb my sleep.

From the last time I wrote on here I have lost family and friends and I can understand why so many become weary with life... not that I think they are weary with life I think they become weary with loss, too many holes left in their hearts where those they have loved have left a space when they died.

We really do become defined by the love we share and when those we shared it with are no longer here we in turn lose a sense of our own definition... our edges become blurred somewhat, not knowing quite where we fit into our own life, it's almost as if the mould is changed or smashed and we have to make a new identity/redefine how we love others and ourselves.

As a family we are living and learning from one of our loved ones who has Dementia, Lewy Body Dementia.. and it is so unlike any of the other dementias'/Alzheimer's I feel it really shouldn't be listed with them. The onslaught of symptoms is greatly affected by stress and change ... change of faces, environment, mood, weather, there is a hypersensitivity to this condition that cannot be quantified.
All of the information out there speaks of hallucinations, I firmly believe there are varying and different experiences of what is commonly classed as a hallucination. I know from witnessing what my LO (loved one) goes through that it's not as delusional or hallucinatory as the "professionals" would have us all believe, on many occasions my LO has picked up on experiences I have had far away from their home, from details of that experience to my actual mood and they have experienced it as a dream or hallucination... and it's usually been within a day or so of it happening, when they have mentioned it too me ..at times I have been shocked that this person, my LO who at times cannot remember who I am or the relationship we share, or how we are related, can be so psychically in tune with me and my emotional state.

I am hoping to add more to this page about our journey and how it plays out in our lives, but for now a small intro into the world that is demented by Lewy Bodies and the affects as a result of and what the professionals can only guess at is the actuality of the condition... the living and breathing with someone who has it.

'til next time...