First and foremost, I am NOT in danger of hurting myself or of doing anything stupid, so nobody should be concerned about that.
The ‘life’ portion of my life is actually pretty good. I started seeing my wife 8 years ago (married for 6), bought a new home 3 years ago, 2 dogs who bring me joy every day, 2 sons (23 and 20) who are both ataxia-free and thriving and an usually optimistic view of the world and life in general.
I’m 47. I got diagnosed with this crap at 22. Every time I turn around, I’m progressing. Sometimes, I just get tired of all this. I get tired of crappy balance. I get tired of shaky hands. I get tired of always feeling so damn fatigued. Sometimes, I just get to the point where I’m ready for it to just be all over. Can anyone else relate? Am I just being silly?
Right John, if I’m being brutally honest I think you’ve hit the nail on the head,…It touched a nerve for me anyway. But, I don’t always feel like that, it very much depends on how I’m being challenged at a particular time…
Like you I have a lot to be thankful for, and I do really appreciate the fact that I’m not worse. Today has actually been a good day
Oh man do I relate. Was ‘formally’ diagnosed with cerebellar ataxia this summer but have known something was up for years (I am 60). Unfortunately the rate of my deterioration appears to have accelerated in the last few months. Mobility and fatigue are my biggest ‘challenges’ (read they suck). I have about an hour of productive time in the morning but after than I haven’t enough energy to get off the couch. My mood is one of continuous realization of activities I will never do again: gardening, fishing, hunting, fused glass work, overseas travel, etc. Keep thinking that I can simply ‘reinvent’ myself but with lack of mobility or energy don’t know how realistic this is.
If you didn’t feel frustrated or even “down” I would be surprised. We didn’t ask for this crap (my word) but unfortunately it is what it is! The best we can do is to take it one day at a time. I don’t know if you read my introductory post but this is the best advice that I was given and it has helped me over some rough times. You have two choices when it comes down to it. Either you can let it overwhelm you or you can continually try to overwhelm it. I chose the latter. FYI, I’ve had this crap for over 50 years.
Yes, like previous replies John, I often feel overwhelmed and at the point of giving in … I was discussing this on a zoom support group meeting recently so know that others feel the same. It’s when that ‘effort’ becomes actual pain and then you sit down or lie on comfy recliner, all the pain goes. That’s when we feel like not ever getting up again. Fortunately, something gets us going. My saviour is listening to hypnotherapy recordings by Andrew Johnson [youtube or FB] … stay safe and dont forget to smile … BTW I am 78 x
NO I understand you - have good days and bad ones too and you are not alone
GOOD FOR YOU- i am 67 and was finally confirmed by a blood test in 2014 so I sympathise
i do pilates twice a week and go tot the gym when i can - keep active is all i can advise - I also take a mild dose of anti-depressants once a day
John you are you’re definitely not alone. I am 63 and have had “it” all my life. Everybody kept saying I was just klutzy. Yeah right! Confirmed in 2001 and my rate of deterioration has gotten so bad that I will need a wheelchair soon. Every day I say to myself I am so lucky to have a beautiful wife to take care of me and that she allowed me to do everything while I still can walk. All I can say is to stay strong!
First off: How dare you let anyone know that this condition, disease, is such a pleasure to have and that everything about this living condition enhances your life so much that we would have it no other way. Are you kidding? Funny thing about it though; It sure makes me appreciate the tiny victories each day that are ahead of me.
Brandon53, what are you talking about???
@John_D I was trying to get somewhere with it but it was poorly formed from jump street.
2 posts were split to a new topic: G-therapy
22 is young, I was 23 and now 36. Hard finding people my age at either point. I hear you on the frustration
Hi, welcome It’s fair to say there aren’t many posts on here from people in the younger age group, and interaction can be so helpful on many levels.
There are a couple of groups, on National Ataxia Foundation, and AtaxiaUK, which are specifically restricted to under 30s.
Apart from that, and I suspect I’ll be criticised for mentioning this…there are several active ataxia support groups on Facebook (these are usually closed groups to ensure privacy) which have members in the younger age group.