Proprioception

[PatsyIpswich]

Despite being diagnosed and vaguely monitored since 2002, I have never been told about proprioception. Someone on here mentioned it and prompted me to Google it. This is an example but you will find many more.wired.co.uk/article/new-sen...

I have contemplated writing a blog but healthunlocked seems to be the ideal way to share things.

Stay safe and don't forget to smile

Patsy x

Credit to: #Rideabike

[edfosho]

Interesting, first I've heard of it too.

Thanks for sharing 👍

[PatsyIpswich in reply to edfosho]

It certainly explains a lot to me in relation to my diagnosis of idiopathic cerebellar ataxia. Thanks for response.

[Jenandbeth]

I work in a school for children with complex needs and we are very aware of proprioception difficulties. We treat it like another sense. We have the 5 senses plus proprioception and vestibular. 'Vestibular sensation comes from movements that involve twisting, spinning, rocking, turning upside down, or moving fast. Proprioception is our internal knowledge of where our body parts are.'. I can observe in my daughter who has SCA 19/22 and a learning disability that she struggles with proprioception ( her consultant blindfolded her and asked her to touch her nose or kick a ball and she couldn't do it) and requires vestibular feedback e.g. swinging in a hammock swing. When we observe a child for sensory profiling we are looking at whether they seek or avoid behaviours that tell them where their body is in space ( proprioception) and/ or vestibular movements like spinning, rocking etc. We then create opportunities to support both seeking and avoidance. I've know children who benefit from weighted vests or backpacks or deep pressure massage for proprioception feedback. And those who need to climb and bounce and spin 🤣!

[PatsyIpswich]

Thank you so much for this #JenandBeth .. I usually skip over these words but after all these years, I'm beginning to understand. X

[paul456]

Hi Patsy

All really interesting although never heard of it on one of my appointments I asked why I can’t walk in the dark she mentioned something about the brain needs to know where you’re feet are and other parts of the body. Not sure we are talking the same thing here 👍🏻

Thanks for sharing 😊

[PatsyIpswich in reply to paul456]

Hi Paul, yes I think it is. Personally I find it easier to read about things than listening. Hence this forum is very useful. Take care x

[Stagger]

I've heard of it before Patsy. Thought it had something to do with the 'Rombergs' sign. I have a positive Rombergs. Cannot stand up and close my eyes even with legs and arms apart without falling over. Wasn't too bad when first diagnosed with Cerebellar Ataxia in 2010 but this got worse through time.

[PatsyIpswich in reply to Stagger]

Thanks for response. A useful word for you too. Bit of a mouthful !Take care x

[Rezzy66]

Just wanted to give my input on proprioception as my physio works on this the majority of my visits. By doing proprioception training I can now shampoo my hair with my eyes closed, walk with a cup of coffee without freezing up from spasticity. There are so many exercises on YouTube to help with this but you have to search for the right thing. It’s all part of neuromuscular rehab and recovery. I’ve found exercises for MS, Parkinson’s and stroke recovery are very helpful. SCA symptoms seem to involve similar movement disorders.

The most important thing is visual exercise like standing in an unstable surface and turning your head left to right. And definitely expect to stumble so prepare a safe area. I earned a few new bruises yesterday.

👍🏼 #rideabike. My hashtag now says #rideatrike

[PatsyIpswich in reply to Rezzy66]

Excellent advice. Thank you so much x

[Trinity1948]

Hello again,Patsy,we met at conference before lock down when we had lunch together. Things have changed such a lot lately here- -my husband had a stroke here on April 23rd.and was in hospital for a week,then transferred to rehab. unit. We were told he would be coming home on May 29th. Bank holiday Monday- - really ?? No,still waiting. He was my unpaid carer, my symptoms seem to be worse,balance and coordination all over the place !

Any help and advice would be very much appreciated. I’ve never heard of proprioception in my 23 years since diagnosis. My husband is 91, I am nearly 86, I think we’ve passed our ‘sell by’ date !!

[PatsyIpswich in reply to Trinity1948]

Good heavens that's scary. I know how it is to have an unpaid carer in vulnerable health. I wish I had advice but brain fog just now. I hope someone else on here can offer advice. Take care and don't forget to smile x