MSA: Hi my wife has MSA, everyday she... - Multiple System A...

Multiple System Atrophy Trust

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MSA

Patmanpat123 profile image
8 Replies

Hi my wife has MSA, everyday she struggles to open her eyes , this can last for a few hours, Ive said to try and blick quick to get the muscles working

but the condition just seems to get worse

Is there anything I can do to improve her life style

Regards

Pat

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Patmanpat123 profile image
Patmanpat123
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8 Replies
Yanno profile image
Yanno

Hello Pat, welcome to this friendly community albeit we all wish we had no need to be here.

My wife doesn’t have the issue with her eyes that you talk about and so I can’t give any personal advice. Have you spoken to one of the specialist nurses at the MSA Trust? Jackie and I have received some excellent advice from our regional nurse, Jill, who would always be our first port of call for help with any issues.

Good luck and hopefully you will find something that will help.

Take care, Ian

Patmanpat123 profile image
Patmanpat123 in reply to Yanno

Thanks for reply yes I think I shall look into the specialist nurses, maybe that is the first port of call

Hellebelle profile image
Hellebelle

Hi Pat . Dad doesn't have this problem at the moment, although I have read about this condition. I recall that botox injections can be helpful. I think like Ian suggested it would be helpful to contact the MSA nurse for your particular area, which can be found through the MSA trust. I don't know whether others on this site can help?

I hope you manage to get some help for your wife.

With love. Helen x

Patmanpat123 profile image
Patmanpat123 in reply to Hellebelle

Thank you for your reply. I will mention the Botox idea to our MSA nurse..

not sure my wife is very much up for that , but then you have to be open minded

anything that helps the condition has to be good

Thanks again Helen.

Regards

Hellebelle profile image
Hellebelle in reply to Patmanpat123

Hi Pat, I know what you mean, it sounds very extreme doesn't it, but dad had a botox injection in his foot to help his mobility some time ago and it worked for a while. I think you are right, we have needed to be more open minded if it has a chance of helping.

Here's hoping there might be some solution out there.

Best wishes

Helen

Keycode profile image
Keycode in reply to Hellebelle

Hi Pat, my mum struggles to open her eyes too she can no longer speak so tends to touch her eyes to let us know that she wants to open them and then we carefully just try and lift her eyelid for her which usually works. I know you can have botox injections to relax the muscles and help with this but my mum has never wanted to have this done. She did used to have botox injections into her saliva glands to help reduce the excess saliva but sadly these were only effective for about 3 weeks when they should last 3 months. They have to be careful how much botox they give at one time but might be an option worth discussing with the neurologist/gp.

Hope this helps a little bit.

Elletheelephant profile image
Elletheelephant

Hi Pat. My husband has eye problem he can't open his eyes first thing and on and off through the day . I found the MSA nurse specialist such a help , she understands so much more than our team here. Always looking fir anything to improve the life we have. This is a truly horrible disease to gave . It's good to meet people like myself on here all Coping with its demands . Hope your wife gets some comfort and ease xxxx

MF31 profile image
MF31

My husband has Botox around his eyes initially because he gets lots of uncontrollable eye movements it does help but it now doesn’t last the 3 months

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