Sticky Blood-Hughes Syndrome Support

Hello I had a bad stroke fours ago im 55 now it left mr with no use of my left hand I was a musician most of my life but can nolonger play t

I can nolonger play the guitar my fingets are very weak as is my hand will I ever be able to regain use of my hand when I try to play it feels very foriegn almost ad if im trying to drive the horse with the cart in front of it

10 Replies

So sorry tommymack!


Hello Tommymack

I'm sorry to hear about your stroke.

Have you been diagnosed with APS?



Hi there, who is looking after your Hughes Syndrome/APS? MaryF


Tommymack I understand TOTALLY. I started playing cornet at age 7 & continued thoughout my life but age 29 Lupus/APS caused a stroke down my right ride & I just havent been able to play properly since so in the end I gave it up.


Im so sorry to hear about the loss of your favourite hobby. Have you tried computers to recreate this? On a Mac you have something called Garageband and can create all sorts of music. I know it won't be the same but sometimes we just have to learn new skills rather than try and do the things we used to do.

If you have an Apple store near you why not go in and ask them to demonstrate. I even think it can be put on an iPad. Good luck to you.


I too can vouch for garage band, we are a family of musicians, at times I lose the use of my hands due to infection and antibiotic allergy which stops me playing the piano and violin. In this house garage band is alive and kicking and my teenage son uses it and makes great music on there and in fact is doing some now for his GCSE. MaryF


My mini strokes left me with some left side weakness, balance issues. Exercise and physical therapy suggested balance training did cure the weakness and imbalance problems.

But I was also left. With holes in my visual cortex and the wherever-smells-are-processed region of the brain. I wear seperate reading glasses as I can not read accurately or fast with the smaller focus field of bi focals. The hole in wherever -smells-are-processed gives only annoying, bit wierd results. Yesterday, my neighbor gave me a present of a bunch of ramps which came with the weekly farm produce order she receives every week. " you like ramps! Good! I hate ramps. Can't stand the smell.". So, I took the ramps and cut up a few stems with the zucchini I was frying. My husband daughter both said the house smelled strongly of fried ramps--but though I could taste them, I never once smelled them.

So now I have to wonder: do I like ramps merely because I can't smell them? And also. How come I can smell lots of things, such as garlic and I onions, but I can't smell ramps?

Wierd. Do you have a neurologist or physical therapist? And if so, have they weighed in on the likelihood of you recovering more control over your fingers?

I have fooled around with garage band. It is neat!


Hi Tommy,

Do you have a neuro-physiotherapist? You should be getting some specialist physiotherapy for this and if you were a musician before your stroke you can work with your physio to regain your function.

The more you do now the better as the longer it goes the harder to gets to regain. I know what you mean about it feeling foreign but talk to the physio about this they will understand. You can get a lot of equipment to re-train your hand and arm.

1 like

Hi Tommy, I also had a stroke almost two years ago. It left me without a quarter of my visual field. i am a professional artist and art teacher and i make a living out of my artworks. Please consider neuro physiotherapy and don't give up.

Take care and let us know how it goes.


Also bear in mind dependent on who you see in the hospital after your stroke they don't always refer you to physio, you may have to ask for it, but if you are in the NHS system and you have had a stroke you are supposed to be offered it or if you ask for it you will get it free.


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