Types of Ataxia - Sudden onset of symptoms??

Hi All, I hope everyone is well.

I was just wondering if anyone who suffers with or knows someone who suffers with Hereditary Cerebral Ataxia knows if random sudden onset of "bad symptoms" is normal?

To try make myself clearer ill breifly explain. My mother suffers with Hereditary Ataxia. Literally within the last TWO days she has lost the ability to dress herself, feed herself and has seemed to have lost what was left of her balance and her shaking is unbelievably worse. I just found her damn near having a panic attack at the bottom of our stairs gripping onto the hand rail partially screaming as if she was hanging off the edge of a cliff for dear life. Bearing in mind she was sat at the bottom of our stairs, not standing but still somehow fearing she was going to lose balance and fall. I calmed her down and explained she couldnt fall further from the ground as she was already sitting down on it to which she just looked so confused. I made sure she made it to the sofa comfortably and now shes calmer but just by the look in her eyes i can tell shes panicked. I am well aware of the progression of this awful condition but can all of that happen within a matter of two days so rapidly? I was just getting used to everything getting slowly progressivly worse and now it seemed to have sped up ten fold.

On this page Im bound to ask SO many questions as this is honestly the first time in years ive not felt so alone. (So grateful for the internet☺️)

Anyway I have an appointment booked with her doctor for Monday, however im concerned these symptoms and how fast they came on, are not normal and i should call for emergency help so she can be taken into hospital for further assesment. I dont want to seem dramatic but its frightening for us but more importantly its so scary for her. Bless my mums little heart ❤️

6 Replies

  • Hi CharlotteIndi

    Progression of ataxia is not that quick (over 2 days) and the speed of deterioration in her symptoms suggests something else is going on. I would advise trying to bring her GP appointment forward from next Monday.

    Best wishes


  • Hi Harriet,

    I had thought as much. Thank you for your advice I will get onto this.

    Thank you x

  • Little update - I ended up calling an ambulance for my mother. Her symptoms and the rapid onset of them made me fear something else had happened to her. Infection, stroke, anything. She has been in hospital for the past two days. Blood tests fine, all observations normal, brain scan came back with no other damage or signs of anything at all apart from the cerebellum issue (ataxia) which looked the same as the scan she had 5 years ago. Unfortunately her condition did just take a sudden turn for the worst, however now she is getting all the help she has so badly needed and deserves. The hospital staff have been AMAZING! She has had Nurology Specialists, physiotherapists, amazing doctors and nurses, I cannot keep up with the amount of people who have seen her to asses her over the past few days all coming with positive attitude towards my mothers on going care. She will hopefully receive medication to calm her anxiety and panic attacks (which she has quite bad), something to help her sleep, home care help (on top of the care she receives from me and my dad), physoo therapt and rehabilitation. Its scary how fast something can just change, and they did say her ataxia is quite severe, but with the right level of care she will be able to live with her condition comfortably. Im lost without her home with us all, apart from at night time we have not left her side. She is the rock of our family and despite us taking care of her, its really her holding us all together. If anyone wants to ask questions about her condition, advise or general queries on ataxia im more then willing to talk to anyone. Ive learned so much from these doctors and done major research myself trying to understand it more. I hope to have her home with me soon xx

  • your mother is very lucky having a supportive caring family,it makes such a difference, hope she improves soon

  • Thank you very much

    Slowly but surely each day as it comes

  • Its week 2 now and she is still in the hospital. Praying shes home for christmas 🙏🏽 Xx

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