OT needs awareness because it’s rare – not many people have heard of it, not many people have it, and when you tell them it means you can’t stand still, not even for a minute, quite frankly, it sounds ridiculous! “Just don’t stand still then.” Imagine that – now who’s being ridiculous?
How do you have a shower, get clothes from the wardrobe? How do you fill your car with petrol, cook dinner, put your make-up on, for the men shave, wait in line for your coffee or queue at the bank or go to the supermarket? That’s not to mention occupations that involve a lot of standing.
And imagine going into a panic just because you walk into a strange place and can’t see any seats, or bumping into a friend in the street and you can’t stop to chat, and no more cocktail parties for you my dear!
Orthostatic Tremor is a neurological disorder and usually needs a Neurologist, one that specialises in Movement Disorders, to diagnose it. But not all Neurologists have heard of it either, so on average, diagnosis takes five to six years from the onset of symptoms.
My own diagnosis took nearly 10 years and didn’t happen ‘til I was living in Spain. And there is no cure and no medication to stop the symptoms. It is a progressive neurological disorder, it’s an invisible disability and it’s relentless, chipping away at your quality of life, day in day out.
So in September, spare a thought for me, and those few others out there in the world with Orthostatic Tremor, some of whom I have been lucky enough to meet in person and who have become very dear friends.
This is a description from a fellow sufferer, Susie Beard from Australia, but it’s almost identical to every other person I know who has OT. I changed one part which was the time it took her to get diagnosed was three years. I have had this condition now since at least 1999.
I now use a wheelchair for every shopping trip and every vacation and would not go anywhere without it. Thank goodness the Spanish medical system recognise it as a disability and have registered me 66 per cent disabled and give me a blue badge to help me park with enough room to get my wheelchair out of the car. Please Google OT and read about it.
Thanks for reading this and from next week my grumps should be back to normal.
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Mike’s opinions are his own and are not necessarily representative of those of the publishers, advertisers or sponsors.