An MS Update

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 …

How Long is a Piece of String?

The question of how long will I be in remission, is a lot like the old one about the piece of string? How long is a piece of string, well, it depends … It depends of how it’s being used, whether it’s frayed and worn, and so on. Similarly, how long will it be before you might go from the relapsing stage to the remission stage, when you have Multiple Sclerosis (MS).

At the moment I seem to be happily in the remission stage of MS, and have been like this more or less for more than a year. I say more or less, because I have had brief interludes of relapsing, but only very brief times. These are called Pseudoexacerbation – it means your body is feeling fragile and your MS symptoms jump up and hit you. This may be caused by too much stress, getting too hot, having an infection, being overly fatigued, and for some people with MS intense cold and do the same thing. When the cause goes away, you go back to feeling your version of ‘good’.

I work hard to reduce the chance of stress in my life – I try to adopt an easy going attitude to life, and just go with the flow as much as I can. I make sure I can keep cool when hot weather is attacking, as it seems to be in my part of South Australia at the moment. Air conditioning and shade are my friends! I try to not overdo things, and if I have, I know I have to rest until by body forgives me again! 

These things may take merely minutes to work for me (or anyone with MS) or they may take a day or so or anything in between, but if it is a Pseudoexacerbation, it will go away and not become a full on relapse, and that is a very good thing! A full on relapse could lead to a brain that has forgotten how to work properly, with memory and cognition almost switched off, with overall muscle weakness, and with terrible feelings of bleuhh…

This current remission I am having is a joy for me, and I am very much hoping this particular ‘Piece of String’ is longer than the length of the journey to the moon and back! Is it because of my current medication, my positive life attitude, my increased levels of exercise (sometimes), or is my body just loving my healthier diet and working harder to fix the damage other parts of my body are doing to me? I love my writing life and if my brain is on the frizzle, I wouldn’t be able to write books and things, like the one in this photo below!

I haven’t had an MRI for some years now, and one of those would indicate how much damage has been done to my Central Nervous System. And my GP has indicated to me that it would be good if I went and saw my neurologist again, so he can see how well I’m doing on the medication he prescribed for me back in 2012, when this ‘wonder drug’ (for me), became available in Australia at an affordable cost. This drug, Gilenya, is a tablet I take every day, rather than the injectable drug, Avonex, that I used to inject into my thigh muscle once a week. The Avonex worked OK to help with my symptoms, but the Gilenya is working much, much better …

So going back to the original question, how long will this remission last? The answer can only be “Who knows?”. Gilenya may go on working well for me forever, and I may never have another relapse again. At the moment, I’m just loving what I have, and working to try to keep it happening as it is now, with my body able to walk and drive my car and my brain able to more or less do all of the things I want it to do!

This is my happy MS story, and I hope others out there have their own happy MS stories too, I’d be glad to hear about it if you do. And if your story is not so happy, why not share that too, sometimes writing about bad things can take some of the bad away …