Detected definite changes since last year
It changes annually
It is extraordinary how one year rolls into the next at an ever increasing speed. At a quick glance I am exactly the same as 12 months ago. I’ve still got MS, who saw that one coming! I still ride The Trike and I’m still just as busy. Now scratch beneath the surface. I have detected definite changes since last year.
The really winner
That prize goes to receiving Famprya from the National Neurological hospital in Queen square. It is only prescribed if walking speed improves significantly, mine did. I am convinced my Quality of Life has improved significantly as well. A couple of friends of mine also take it and agree with me on how their well-being has improved.
Sydney opera house
Going to Australia
Me and The Wife went to visit The Son in Sydney, it was the holiday of a lifetime. The lowest point was the destruction of The Trike by baggage handlers at Sydney airport. Eventually I got full compensation from Virgin Australia though why it took them two months to settle a small claim is huge a mystery to me.
A year ago
I was finishing the MS-SMART drug trial and I was feeling very positive about my MS. Three months after it had finished I definitely felt that it was taking a turn for the worse; what a bummer. In September the trial results were announced and the drugs amiloride, fluoxetine and riluzole had NOT been successful in protecting nerves from the effects of MS; even bigger bummer.
I felt gutted
I’m quite sure I was not alone. Just waiting for the inevitable worsening of my condition did not appeal to me. I did some research but there are very few options for people like me. In an attempt to be positive I’ve started taking the antioxidant Alpha Lipoic Acid, 1200 IU every day. The jury are out on this one but I feel better for taking a positive step.
Detected definite changes since last year
Life is harder and slower. I definitely have less energy than a year ago and it is not just because I am 64.
Transferring food from plate to mouth is an even slower process plus I’m always knackered after eating a meal. Twirling spaghetti round a fork is painfully slow and faintly embarrassing. Back in the day I always used chopsticks to eat a Chinese meal now I slurp it with a spoon.
Soon The Wife will say “Its supper time darling, you can choose. Either a Pelican bib or a napkin tied round your neck. Which is it to be?”
My writing and typing are truly dreadful, thank goodness for Dragon dictation software. Rewiring a 3 pin electrical plug can take me half an hour. As the doing up shirt buttons, less said the better.
Social capital
I continue to play bridge every week where I more than hold my own and quite often partner and I get a top. YES, I do have a life outside the house. Its called social capital
There is no doubt
Some of my motor skills are going down the plug hole but I cling on, by my fingernails, to a reasonable quality of life. Life could be a whole lot worse.
Associated articles
Getting the best from my lif.
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I started the MS-SMART trial.
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December 2018
I’m really struggling now to get upstairs and will have to think about a stairlift unfortunately. By the end of the day, my stair climbing ability is much much worse and that of course is when I need it most! How are you doing with this Patrick? I remember in the past ypu saying you could still get upstairs OK. John
Hello John,
Standing up is a struggle at times but once I’m up I move slowly and must concentrate. Recently got a brace to stop knee hyperextending and life is easier. I can manage stairs OK but its slow. The Wife had a partial knee replacement I could go up and down stairs faster than her. My most stressful problems are lack of feeling in finger tips and double vision. Life is a struggle but always try to look forward and not back
Website is a big help for me, very therapeutic