Steve

Hi everyone,

I was lucky to be the winner of the Fight Dementia, Priceline gift box for my wife!

A big thank you to everyone involved.

I'm 42, and was in the last month finally diagnosed with Lewy Body Dementia.

Myself and my wonderful wife have spent the last 3 years in the public system that still to this day hasn't given me a diagnosis. They said I have some sort of Dementia but couldn't give an exact diagnosis. They had me on the waiting list to see a Neurosurgeon.

I still haven't even got a letter saying I'm on the waiting list. Only just recently by luck my wife was talking to someone on Facebook who runs the Sunshine Coast Lewy Body Facebook page. She took her father to a private geriatician. She told the Dr of our situation in the public system and the Dr agreed to see me at a greatly reduced cost.

As I'm on a disability pension and my wife is on a carers pension money is so tight. So the opportunity to see a private Dr who might have been able to help us was a God send.

I had been suffering with the typical Lewy Body symptoms. Pain that moves from day to day, cognition would change hourly, hardly sleeping, very restless REM sleep. Memory loss. Some days I couldn't shower, shave or get dressed by myself. I would wander at night not knowing what I was doing. I would create sculptures from tins out of the cupboard, put sticky labels with the alphabet all over the house or use the bathroom floor as a toilet. I would have no memory of any of this. I could only shuffle, not walk short distances. Needed a wheelchair to see the dr or go shopping. If I was having a slightly better day I may use a walker.

A 42 year old man using a walker! It shouldn't be like that.

Anyway I got to see the geriatrician who with all the information and brain scans diagnosed me with Lewy Body Dementia. It shook our world. How could I at 42 have dementia?

In some way it was a relief to finally have a diagnosis.

I asked the Dr could I take some medication that would slow down this god awful disease. She replied no. It’s incurable. She could only offer medication to help with the symptoms. So I'm on an Alzheimer's medication that will take a few months to see if it helps in any way. If not then I only have the choice of two other medications that may help. Before my diagnosis my priority was to organize life insurance at a ridiculous price, but it had to be done, and to get my will in order. I know that's taken care of which gives me some peace.

Myself and my wife are on our second marriages. I got ill 9 months into my second marriage. We both feel like we have finally found our soulmates. But it wasn't fair that I got ill so soon into our marriage. But for some reason my wife rolled her sleeves up and said this doesn't matter I'm in it for the long haul. My wife takes full time care and is so wonderful. Most of the time I feel like a total invalid. But she loves me in such a way that I still feel like a man.

After I've had a night where I've used the bathroom floor as a toilet she says it's not a problem, makes sure I'm ok and speaks to me like I'm a person; someone who has thoughts and feelings. She never makes me feel silly. It's gotten to the stage where she does everything round the house from paying all the bills to getting my medication and all while looking after 2 kids. It must affect her to see the man she fell in love with change. And change from day to day.

The job that so many carers do is invaluable. From husbands and wives, to children and parents. As a person with dementia I forget to say thankyou for all the things she does. My mind doesn't even go there. I feel trapped in my body at times. But even in my worst days I know there is someone who is caring for me, that I'm in a safe place. And that that person who looks me in the eyes when I don't know what's going on, loves me more than words can say. There is apart of me that recognizes that the person who is caring for me is someone that loves me.

To all the carers out there please know you make a difference. Even when it may not seem like it to you.

We must get the word out there that this terrible disease that takes away a person you love and it needs more funding. It needs to be recognized by our politicians.

I wonder what the prime-minister would do if her husband or mother or father had this illness. I know some funding has been released but you know what. I haven't seen any of it. Have you?

Thanks.

Steve.

Glasshouse Mountains QLD