I haven’t been writing much here because basically, MS seems a fairly ignorable part of my life. When I was at my most affected stage/stages, the MS seemed to be the number one thing in my life. But now, now life in its various forms takes centre stage, and I am getting on with all of the other things that a going on.
I still have MS, but to most other people, they can’t see anything wrong, and are surprised. I can feel the things they can’t see though, the tiredness at night when I’ve been doing too much, the constant tingling in my fingers and lower legs and feet. People don’t feel the anguish or at least self-irritation I feel when I forget things, or lose words when I’m talking …
Speaking of talking, I listened to a great speaker recently. Her name is Kate Swaffer, and she is the South Australian of the Year, because of all of the work she has been doing as an advocate for people with dementia, working to get them better conditions, treatments, and raising understanding and awareness of it. Kate was diagnosed at the age of 49 with Early Onset Dementia, and she is still living with this and fighting for all who are living with it as well.
One thing that impressed me at that talk was Kate’s confident manner and the way she spoke passionately and intelligently for almost an hour, with no notes. As a wannabe Public Speaker, this was a fine performance I would like to be able to match! I already knew Kate, online at least, so it was lovely to catch up with her, and have a real live hug!
As I listened to Kate speak, I was also reflecting on my own mental health issues,and in particular my Mild Cognitive Impairment … MCI is a thing that has been recognised for well over a hundred years, for people with MS, but is seems to get far less attention than the physical problems MS can bring. I was diagnosed with this, when my neurologist sent me off to see a neuropsychologist to be tested. The test was quite lengthy and yes, the result certainly indicated I was affected. Apparently around 58% of Australians are similarly affected.
This MCI in MS has recently been recognised as a form of dementia. It isn’t Alzheimers Disease though, which is the kind of dementia most people would think of first, which is the form that can affect old people, and severely affect their lives, and can eventually lead to living their final years in an aged care facility. My own father lived with this terrible disease and as his memory failed, I felt like I had lost my dad years before his body life ended … I’m glad I don’t have that kind of dementia.
The dementia people with MS have is much slower, and far less damaging to the sense of self. It can affect memory, cognitive speed, ability to find the right word when speaking, and so on. It is mild though, and that gives me hope for my future.
Did you already know about this aspect of Multiple Sclerosis? Please leave your thoughts about this in the comments …