Good day then bad day, why?

Hi, I've recently been diagnosed with late onset Idiopathic Cerebellar Ataxia and seem to have a couple of reasonable days where my balance is copable with (is there such a word?) Then bang, the next morning when I get out of bed I'm wobbling about like mad hanging on to furniture and clinging on to my stick and feeling totally wiped out and muddle headed. I wasn't doing anything strenuous or stressful yesterday and I had a reasonable nights sleep, only getting up once in fact, so I can't understand it. Is this common?

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  • Hi😏, yes it is almost par for the course with most people. The bottom line is, go with the flow🙂 I can usually tell what sort of day it's going to be as soon as I sit up in bed in the morning🙄 The getting upright motion makes my head feel like a shaken snow globe. Some days the sensation settles quicker than others, that's a good day😉

    In my experience, mobility, overall balance, eye problems, mental focus, spatial awareness, memory and deep fatigue etc can all vary, even day to day. It makes long term planning very difficult.

    When I'm overwhelmed like this, sitting with my head level for a few hours makes me feel much better🙂xB

  • Thank you, so far today I've taken it easy, not moving about much but thank goodness I'm OK sitting, surfing the net. If I read too much though the words blur a bit and I start to nod off. Tomoz will be better....trying to be positive here folks. Xx

  • This is so spot on with me. I work full time, and always know as soon as I sit up at 6am how the day will be. Sitting at a computer all day is actually good as it gives the balance time to settle over the morning. I just wish I didn't have to work! Snow globe is an excellent anallagy. I have real difficulty describing how I feel as I look so 'normal' when I often feel terrible.

  • Exactly the same with me. Sometimes, when my balance, wobliness, is a bit pronounced and somebody asks me how I'm doing, I'll say ok-just a little off balance. Sometimes I'll say I'm not at my best, and people say I look good and 'normal ', when, like you, I feel terrible! Hang in there. It was hard working too, for me. Finally, I got to retire!🙂

  • Well done Beryl your explanation of our head problem is spot on a shaken snow globe!!!

    Bye the way I used to enjoy your letters to John RN but haven't heard from him for ages . Any news ?

    Cheers Ted

  • Hi Ted🙂 John lives locally but I don't know exactly where. He was very active wasn't he, I enjoyed his humorous posts 😂 xB

  • I know your feeling, it is 'normal' for Ataxia if anything about it can be described as such. Planning to do anything is very difficult as you don't know until the day arrives if you are going to be feeling up to doing it. You are not alone!

  • Hi Tiggywinkles, good to hear I'm not alone. I'm OK if I walk very, very slowly, only look down and avoid door frames. My arms are constantly full of bruises where I've lost balance and crashed into above mentioned door frames, doors, cupboards etc. I'd liken it to being on board a cross channel ferry on a very rough windy day. The tall fellas in my family have learnt that when they want a peck on the cheek they have to hang on to my shoulders or I fall over backwards. Lol. Perhaps hand kissing should be reinstated for us Ataxians???

  • I've had the same problem with door frames!

  • I'm forever rapping my knuckles due to arms taking on a life of their own😉xB

  • Perhaps the OT should supply us with skateboarding gear, you know, elbow and knee pads....ooooo I wonder if they do them Elsa Frozen style. Lol. 😂😂

  • god it was only last night i started thinking that

  • Wot....Elsa Frozen Style??!! Tee hee. 😁

  • Door frames and banging my head, clumsiness, seems to go with the territory for me. I'll have a bruise or two that shows up later, and I'll say I have to stop fighting with door frames! Haha... Sometimes, walking slower and using my cane to steady myself helps.

  • Hello I to have Cerebellar Ataxia and have falls it caused by your Cerebellar been damaged as Cerebellum controls your Balance and Coordination that how we have falls and miss judge doors and bang into door frame if you want you can get information from Ataxia Uk

  • I have the same problem ( cerebellar ataxia ). I have good days and bad days. Sometimes, my balance is so off, that probably people think I'm a drunk- and I don't drink. I've had several bad falls over the last few years, so I try to be very careful. I guess it goes with the territory, sir. Keep on keepin' on and don't let this get you down!

  • If only I was drunk, I get on the wagon😉xB

  • Thanks so much, I'll try. Xx

  • I concur with everything people have said. I don't have good days just BETTER days. Yes you're not alone. I can feel ok in the house but when I go out sometimes it can be a different matter! Maybe it's nerves? For me shaking can be an issue too. Keep plodding on & remain positive. Cerebellar ataxia doesn't define you!

    I have found my rollator invaluable for balance around the house. It's lightweight. Keep your chin up.

  • I totally agree re being on familiar territory is so much easier🙂 Home ground makes me feel much safer, I feel as though it frees my mind to a certain extent, I can judge movement without having to think too much. 🙂xB

  • Thanks Ginger1, I need to get one of those organised then I won't have to always be hanging on to my husband's arm like a limpit and I'll try to keep smiling. 😁😁

  • I think i will get one as always hanging on my husbands arm like you, I pull everyone with me haha keep smiling 😁😁

    Really nervous if don't know where I'm going.

  • i have cerebellar ataxia. cloudy days different weather & just the way the condition can go at times. i went a week feeling that way it was cloudy all week. it makes me tired, dizzy, walk with a wide gait. its something no one can control.but on sunny days im pretty good. its something ive done as much research on it as i can but theres not much because its a rare disease and they wont put out the money to research it. hope that helps

  • Low pressure weighs me down too, roll on summer😉xB

  • I'll second that, I hate being freezy cold. We're in a drafty old rental house until our self build is built and I'm dreaming of underfloor heating etc and not 3 pairs of socks, thermals and thick jumpers....roll on Spring/summer. Long light days and waaaaarrrrrm. X🌞🌞🌞🌞

  • 🙂underfloor heating is great, you'll love it👍 My husband would be jealous, he'd like to self build🙂 Although his idea of doing it is flatpack/timber frame😉 Good luck🙂xB

  • Yup, that's what we're doing with a view to get as near to Passiv Haus that we can. Won't be long before the foundations go in. We're not builders just fulfilling a dream, "Escaping to the Country" in Shropshire. Xx

  • Yes, I can empathize. There isn't much support for those with cerebellar ataxia in the USA, where I live. National Ataxia Assoc. mainly helps those with an inherited - type ataxia. Mine is not an inherited disease process. Keep on keeping on, is what I say!

  • Hi🙂 Have you looked at the link to Support Groups on ataxia.org 🤔xB

  • Thank you, yes I have. The National Ataxia Foundation state in their website, that they offer support for inherited Ataxia, and for those that have other types, they should see their doctor's. My doctor is very busy, sees me and checks me out, for about 20 minutes, every six months and that's it. I do like to interreact with other 'Ataxian's' on this healthunlocked.com website. It has been very helpful for me to know that there are others that are having similar problems, like mine, and there is a mutual understanding and support!

  • thats what i mean by the weather.

  • Yes, I don't know why either, but although I have symptoms everyday (gait/balance,dexterity, speech, swallowing and vision- 24/7) some days are bit better then other's. Morning's are most generally my worse time (physically and mentally), but as the day goes on I feel a bit better. Some days I'm totally worn out, whereas other days I have more energy. I can be certain if I burn the candle at both ends one day, I'm totally spent the next. No rhyme or reason, at least for me, as I was diagnosed with my ataxia (late-onset sporadic cerebellar ataxia-unknown cause, symptoms 24/7, progressive) 13 years ago, although I had very minor symptoms starting about 8 years before diagnosis. Sometimes I feel like I'm on a hamster wheel...,ha!My best to all..., ;o)

  • Exercise exercise and exercise

  • Thanks for feedback, I've only recently been diagnosed and it has taken a while to accept whats happening to me and my limitations. 18 months ago I went to exercise dance classes for over 50s twice a week and was a very active 65 yr old so falling all over the place sort of put paid to that. We've bought a recumbent exercise bike and I'm building up my time on that every day but tbh when your life has been turned upside down and all my future plans put into doubt, the last thing I want to do is go to the gym, it takes me all my time to get out of bed in the morning. I am going to try tho as I know keeping active is very important with Ataxia, but I've still got to get my head round things. Some better days and some rubbish ones seems as though that's what's in store for my future, hey ho that's life.

  • Cycling and swimming are the best forms of exercise for us ataxians apparently. I've got a recumbent bike too. Can only manage about 10 mins but it's better than nothing. I used to go spinning but ataxia put paid to that many years ago. I went swimming for about 3 years up until about a year ago. I loved it as its non weight bearing but dressing is too difficult for me now. No gym required! I do other exercises too. Look at You Tube. You may find something suitable. Remember to take it easy & not overdo it!!😜

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