opening of eyelids

[klazien]

Has anybody ever experienced difficulty in opening their eyelids?

[wobblybee]

🤔 I’ve seen this mentioned by others

There are several possible reasons for this..

parkinsonsresource.org/news...

en.wikipedia.org/wiki/Aprax...

[klazien in reply to wobblybee]

Thank you for these articles. I Always thought that since ataxia affects some muscles, maybe that too. My MRi only shows a small shrinkage of the brain, nothing else but maybe that is considered to be a lesion.

[wobblybee in reply to klazien]

🤔 I’m similar..my MRIs (one with contrast) showed mild Cerebellar Atrophy. Although..it is 10yrs since the last one, and I do have notable progression. You would need to have your Neurologist confirm whether the atrophy can be considered a lesion, personally I’m inclined to think it isn’t..

[klazien in reply to wobblybee]

OK

[Jingle1967]

Yes, I also have Blepharospasm and have to open my eyes with my fingers. Blepharospasm causes involuntary closing of the eyes and I have Botox injections every 3 months to control it. I have Idiopathic Cerrebellar Ataxia. I’m 56. Was diagnosed about 3 years ago.

[Wazzer72 in reply to Jingle1967]

hi jingle1967 I also have idiopathic cerebellar ataxia been diagnosed few months what do u have balance problems bladder can’t hold it in some times double vision their my symptoms can walk on my own at moment got hospital in June anyway bye for now

[wobblybee in reply to Jingle1967]

My initial reaction was to say …I recognise that. But..what I actually do think I have is Blepharitis.

This has been worrying me for some time, and despite seeing an Eye Specialist weeks ago..it wasn’t commented on other than she said ‘you’ve got dry eyes’. She prescribed Steroid Drops..which leads me to think there must have been inflammation.

I’m back again next week..with plenty of questions

🤔 I also have a very dry mouth

At best dry eyes and dry mouth can be caused by Vitamin A deficiency

Hopefully it’s not linked to Sjogens Syndrome

[Jingle1967 in reply to wobblybee]

I had a dry mouth a couple of years before Blepharospasm; probably in 2017. Not sure if it was linked or not?

What is Sjogens Syndrome?

[wobblybee in reply to Jingle1967]

nhsinform.scot/illnesses-an...

[klazien in reply to wobblybee]

Thank you for this article but there are so many incurable problems that I tend to ignore it all.

I am usually to tired to care but do what I can such as using artificial tears and having a thermos of drinks for the night. Also I always calculate how long it is possible to be away from a toilet, which is a nuisance and never stand without holding on to something. Luckily I can still read with an enlarged font.

Communication is done by writing (typing) since my speech is uncomprehensive.

[suzie44na in reply to wobblybee]

yes that was my thought too sjogrens syndrome, hope not.

[wobblybee in reply to suzie44na]

I had a Vit A deficiency test today.

🤞It’s ok

[suzie44na in reply to wobblybee]

great! All the best.

[PatsyIpswich]

Yes my optician recommended blood test but gp didn't know what it would be for. I was referred to neurologist who had test done and it came back negative. X

[suzie44na]

Hi, I have trouble with mine too, sometimes it is worse than others. If I look down for too long it is worse or if I am tired. It can be dystonia, ptosis or weak muscles. Best to ask your neurologist. All the best

Suzie

[Jingle1967]

I feel like I have aged 40 years in about 3! My balance is really bad. I can only walk unaided indoors; and that’s only because I furniture surf. I can barely speak, can’t write or drive. Don’t or can’t work and my eyesight is blurry. My coordination has also gone, I can’t write, type or text. As for bladder problems; I find that I can’t hold it. I usually plan ahead. Go to the loo at set times, even if I don’t need it.

Basically I can’t do anything, and I’m bored to tears. There’s only so much Netflix you can watch! If anyone has ideas to pass the time I’d be forever grateful?!

[medea in reply to Jingle1967]

Books - Audible!

[Telegraphist]

I understand your frustration. Unable to do things that require moving about or using hands I need for stability, I too have searched for more fulfilling hobbies or pastimes than watching a screen. Also, because I share your frustration, I even asked the question of ChatGPT, the AI programme.

I have tried loads but my shortlist is going to be suitable only for my profile of skills/interests/abilities. There are lists of ways to pass time on the internet; perhaps search?

The one thing I would recommend is Audiobooks. Listening to a book or podcast is a different experience to reading a book and there are LOADS to choose from. I pay for Audible, who also provide free listens. Free services include Wireless Theatre. wirelesstheatrecompany.co.uk/

Fiction, non fiction, crime or romance, history or humour, there is something for everyone.

With bluetooth headphones I find I can listen while sitting, cruising round the furniture, making a cuppa - even going to the....... you get the idea.

Keep smiling.....

[yorkshiregirl4 in reply to Telegraphist]

I found audio books very useful when I was diagnosed with Chronic Fatigue many years ago. In fact the recent Pernicious Anaemia diagnosis feels very similar indeed to me. I found listening to books very relaxing but did tend to fall asleep and had to rewind on numerous occasions, but that was fine. It is probably the easiest way to try to forget the ongoing limitations every one of us have to contend with. In fact this post has reminded me of the pleasure of audio books. Thank you. Do give the audio books a try!

[klazien in reply to yorkshiregirl4]

I like audiobooks although it is harder to skip the non-interesting bits so for as long as e-books with larger fonts are possible, I go on with that.

Like films, I find it a good way to escape into the lives and situations of capable people.

[Telegraphist]

My reply was intended, of course, for jingle1967....