I had a thought. Before I was diagnosed I was really into working out pushing my body. For years I would do this but i would train my legs just as hard and nothing. I’m starting to think maybe it was because of my neurological problems that they didn’t get any bigger? Growing up I always did have trouble with my pegs. Whether it was not being able to run not being able to jump. Losing the ability to jump rope. It’s years later but I’m just trying to connect dots. Am I crazy?
At school, I hated sports/ exertion of any kind, I’d much rather curl up with a book I had difficulty jumping rope too. When I did finally want to do regular exercise ( aerobics and badminton back in the 80s), ataxia kicked in and I couldn’t balance So, maybe there was ‘something’ lurking and holding me back right from the start xB
There is always some uncertainty. I do not want to blame the disease for my shortcomings but I want to be accurate and I can’t help but notice certain things.
Well, it is what is. I’ve spent too much time overthinking, trying to reason this thing out… and it only held me back from living the best way I can for now. I’m sure many people cast their minds back, in case there was something they should’ve picked up on earlier and could possibly have had investigated. But, really, how could anyone put two and two together For most of us actual ataxia symptoms become the norm almost before we realise what’s happened, and the best way we can help ourselves is by ‘adjusting’ rather than continually seeking to lay blame I know myself much better now, I know the difference between my own basic shortcomings, and the ataxia symptoms that are challenging xB
I was never any good with sports either. It is very well possible that muscle strength and coordination was always a weak point. I never had muscle definition, although I worked out a lot in the eighties too and was quite strong! I remember showing people how I was never able to pop up a biceps! Something in our genes? Then again, Beryl_Park is right, it doesn’t matter now. All that matters is how we cope…
My Ataxia specialist asked me at the first meeting how I’d been at sports as a child (terrible always)! He wasn’t surprised when I told him. I also asked if trying to build stamina would help- he said not, cos it concerns interruption of nerve signals but never exactly the same pattern twice. So each time you do the movement you’re exercising different muscles…
So - it’s always been there, but not bad enough to be apparent, and nothing you could have done/will do helps. Sorry if this is depressing
I loved sports but could never start on the whistle… I picked up pace and overtook other runners but ran in a diagonal line!! I always bumped into people walking beside me especially when talking. Tripped up nothing. I could write perfect shorthand outlines but could never achieve a good speed. Typing not so bad although I made lots of errors… wp such a blessing.
It all becomes clear in retrospect. Thank you @Mazy for explaining interruption of nerve signals … I have heard this before but not been able to digest it. Does this mean any exercise is futile?
Exercise generally is good, but don’t over do legs - speak to your neurologist. Mine says that the message doesn’t get through to the right muscles when brain says ‘walk’, so I lurch about instead… I find an Osteopath is good to massage stiff muscles - if you can find one! I use a stick now, which helps with balance a lot and shows that I have a problem - otherwise people would think I am drunk x most unfair as I only take v small amounts of alcohol on special occasions.
Hand to eye generally is **** poor, but I can thread a needle easily first time. I cross stitch as a hobby and enjoy it v much, find your good points and work out how to play to them
It’s many years since I was at your stage @Mazy Mazy but I remember well how useful that advice was to walk with a stick to alert others. I read it on an early ataxia discussion website . called Living With Ataxia, I have at some time in the past [when I had private health insurance] consulted an osteopath and he told me that the brain can be retrained into learning to walk but of course, ataxia is not like recovering from a stroke for instance. As you said, the messages are interrupted. I was told two sticks are better for posture and bought walking canes but that restricts you being able to use one hand at least. Then I moved on to rollator which works well for me at the moment… a tray to carry things and a seat to rest when needed. I too can still thread a needle [75 years old tomorrow!] and manage crochet most of the time but I get tremors when tired.
75! Well done, I thought you were younger than me (60 this year). Crafting is good as something which an be done by all!
I was about same stage as you at 60 @Mazy … I love to hear your ‘thoughts’ so please keep sharing. I am always thinking of ways to describe what’s happening to me. One of the things that I feel is important to me is finding atmosphere, I cant keep my spirits up without experiencing atmosphere and that gives me the motivation to get myself out and about.