It’s my opinion. I think that the psychological problems arising from Ataxia are more devastating than the physical part. Healthy folks can see the physical part but are just unaware of the other side. You may not be depressed but it hurts just as much.
This is true, and it must be similar for anyone challenged by what are sometimes ‘hidden disabilities’. Although we often hear that ataxia is experienced differently depending on the type, symptoms, and rate progression, there’s no denying it is debilitating, and it has a psychological impact.
In my early stages mobility problems didn’t challenge me, so it was virtually impossible for others to empathise and be aware I was struggling. It was other ‘hidden symptoms’ that I couldn’t understand, found difficult to get medical help with, scared and depressed me.
Now, I’m still challenged by these symptoms, but I know what they’re called (which helps take the fear away) and the reason I have them. I know they won’t suddenly disappear, so I have to find a way of dealing with them.
Increasingly poor mobility is something I’m still coming to terms with. I try to remember not to move suddenly, and bend or lean back when I’m standing, because this makes me susceptible to falls. And, after every fall there’s seems to be the knock-on effect of more progression. But, with the best will in the world it’s nigh on impossible not to carry on as automatically as possible, so if I don’t fall it’s a bonus
The cerebellum and the brain stem shrinking doesn’t stop all the emotions. You have to be really tough to have this… ever evolving affliction. You can be having a good day but always live with the knowledge that more challenging times are coming. Having 2 young kids, I just can’t allow myself to feel a bit low sometimes (there’s already the 50/50 chance they might have it to deal with). As it’s a rare disease I have not yet met another ataxian, the feeling of isolation is draining. I also question the lack of empathy in my family. I put it down to the fact that it looks like i’m not doing too bad for now so… but it’s emotionally as well as physically exhausting…
Mellie, I’m a person who normally keeps a fairly tight rein on emotions, granted I can easily flare up if something rocks my boat, but I yesterday I was floored when unexpectantly I lost complete control and burst into tears. I’d received the call to confirm my first grandchild had been born.
This morning I was allowed in for a couple of minutes to see my daughter and baby, both were fast asleep which was lucky…I burst into tears as soon as I saw them
This is so untypical for me. But I realise that along with Cognition, Emotion can be greatly affected by ataxia…and you just have to go with the flow. With the best will in the world, there comes a time when you just have no control.
For years my ataxia symptoms crept on insidiously, and it took me a long time to understand just how it was affecting me overall. My husband is considerate, but he hasn’t the ‘patience’ to read ataxia facts… I think we’d both benefit if he made time to watch Dr Schmahmann’s video about Cognition and Emotion/Cognitive Effective Syndrome.
Have you looked on the AtaxiaUK website to find out if there’s a support group within striking distance. Or, if you’re really remote, ring the helpline number, explain your situation and ask if there’s a chance they can put you in touch with another member nearer your vicinity. www.ataxia.org.uk
Thank you Beryl. Congratulations on becoming a grandma! I would be very emosh too in your place. If one day i’m a grandma too, unlike my own mother, I’ll try to be the best grandmother I can be.
Yes, congratulations Beryl. I think shedding a few tears is definitely understandable!!
I’m not sure if this post is either months or years old, but I thought I’d reply anyway.
This condition IS draining, especially emotionally. I, too, Have not met anyone else who has it. I’ve had it for about five years. People just don’t understand. They think that because we can’t speak, we’re stupid! That’s simply not the case. I have balance problems, can’t speak well, and can’t write, so, basically, I can’t do anything. It’s very frustrating, especially for someone who used to be seriously independent! Most people have never heard of this. I’m so happy to have found a place where people understand! Even my own family doesn’t even get it!