Lighting

[mizzdancer]

Hi, my mum has Cerebellar ataxia and CANVAS syndrome. She is now unable to balance to turn lights on/off and with nights starting to cut in we’re looking at options to help. Has anybody used anything that helps with this? Many thanks, Tracey

[edfosho]

I don't have the same balance issue, however for convenience I use smart light bulbs which I control from my smartphone. In my case, I have a smart light bulb in my hallway that I switch on and off from my phone whilst I'm in bed. I'm happy to recommend some products if needed.

Most of them can be controlled using voice activation services like Amazon's Alexa or Google Assistant (which I do not use because my voice is fairly lazy!)

[mizzdancer in reply to edfosho]

Thank you so much. Sadly she’s at the point where she can’t balance with anything in her hand & her speech is an ongoing battle with Alexa 🙄🤦‍♀️🤯

[crazycat18]

I have cerebellar ataxia also and I control the light in my bedroom by getting Alexa to turn the light on and off by voice. If your mum can use her voice then you can set up Alexa to do any room you need to. Hope this helps.Alison

[mizzdancer in reply to crazycat18]

Thank you Alison, I do appreciate your reply. Sadly Alexa’s a no go as mums speech is rapidly becoming intelligible 😔

[Stagger]

What is CAVAS? I have a positive Rhombergs sign making it impossible to stand without falling over with eyes closed.

[mizzdancer in reply to Stagger]

Thank you so much for taking the time to reply, I do appreciate it. CANVAS syndrome is a rare extension (4/5 people in over a million 😳🤦‍♀️) to Cerebellar ataxia. Mum can no longer balance to use the light switches, carry a torch, etc. I feel for you bless you 😔

[Stagger in reply to mizzdancer]

Thank you. I'd never heard of it

[wobblybee in reply to Stagger]

🙂 This link explains CANVAS syndrome. Someone in my local group was diagnosed recently…via Whole Genome Sequencing.

balanceanddizziness.org/wp-...

[Stagger in reply to wobblybee]

Very interesting read. Thanks for link. What I also found interesting was the word, 'syndrome'. I say this because my doctor recently described my condition as being, Cerebellar Ataxia syndrome. I found this a bit odd but after reading from the link link you posted I now understand (or I think I do) what it means.

[wobblybee in reply to Stagger]

🙂 Just to be certain, I googled ‘syndrome’ myself

‘’A syndrome is a recognizable complex of symptoms and physical findings which indicate a specific condition for which a direct cause is not necessarily understood.’

[Stagger in reply to wobblybee]

Great explanation. Do you have a link to this? Do you also think that any unknown cause of Cerebellar Ataxia can be described as a syndrome?

[wobblybee in reply to Stagger]

🙂 I simply googled ‘medical term for syndrome’

I have an unknown cause myself…this type is referred to as ‘Idiopathic Cerebellar Ataxia’

[Tallguy101]

I have cerebellar ataxia of unknown type for 17 years. When I get up in the night to use the bathroom, I simply use a bright torch. I find putting the main lights on wakes me up too much. Luckily our bathroom is next to our bedroom.

[mizzdancer in reply to Tallguy101]

Thank you so much for replying, mum is now sadly unable to balance carrying anything, she can’t reach for the light switches, if the land line rings etc, it’s so difficult 😔

[Ginger1]

How about a plug in light with a sensor or if they make them a sensor battery light? I think I've seen plug in ones when I have looked online but I am not sure. Good luck 🤞

[Elizabethtracy]

What about lamps with timers I know it would only be lamps not the main light but at least it is some light you would have set the timer for her

[7151]

I dont know thé answer but i m having trouble taping in code at thé bank Rotten illness 🙄

[1940girl]

Hi, I have CANVAS and have the same issue with balance as your mum, I have smart light bulbs and I have a little control box which is very easy to use, it may be of some use to your mum.

[adv017]

I too have cerebella ataxia. I have motion sensor night light which is outside my toilet and is switched on at night. Hope this helps - good luck

[Piero]

For me, the most depressing factor is that we have to accept that there's rarely any symptomatic improvement. ( I fell down in the garden yesterday and again this afternoon). I'm contemplating the purchase of a small battery driven invalid vehicle. Any advice ????