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Fear of the loss of the use of hands.

I am presently only formally diagnosed with progressive MS, probably because I didn’t take up the offer of an MRI and did not seek consultations in the first years. But I can’t see how it could be anything but primary progressive, as I never recognised any exacerbations or periods of remission and have just had a very slow deterioration in my walking ability. I’m in my late 30s. It seems that my symptoms are very one-sided. My left leg, arm and hand are much worse than my right. I have accepted the deterioration of my walking and loss of my cycling ability over the years, but what I fear so much is the loss of the use of my hands, as I love art, to draw, to paint, do crafts etc. These are things that are intrinsic to making me who I am, I feel. Thankfully I am right-handed, so I am managing so far. Does anyone else have these fears, and how do you cope?

With all good wishes.

Hi Lapwing and welcome to the board!

Well yes I think we ALL have these fears. It’s only normal so don’t beat yourself up for feeling like that. Try to keep in mind that nobody in the world knows what the future holds… it’s just that with an illness like MS that unpredictable future seems bigger… but it’s not really.

To keep your hands strong and flexible there are some things you can do. I saw a physiotherapist recently and said I was worried about my hands and she gave me some tips to help. Ask your GP to refer you to physio… they will also help you with your balance and walking.

Here’s some exercises she told me about:

Get a piece of string or a shoelace and keep tying it into knots, then unpicking the knots.

She told me to get some ‘therapy putty’ to play with when watching telling. Actually it’s just like plastercine (spelling) so you could get some of that… keep pressing it and pulling at it to keep your fingers strong.

Seeing a physio will give you more tips.

You know there’s no way of knowing if MS will affect both of your hands… it might, but equally it might not. So just think about what you CAN do today and try not to think about tomorrow.

Certainly sounds as if you have PPMS… and sometimes it does only affect one side. Some people think PPMS is the ‘worst’ MS you can get… but not so. Aggressive RRMS can actually be very disabling very quickly.

Glad you found us! It really helps coming on here and know you are not alone.

One day at a time!!! Hope this helps. Whenever you get scared concentrate on your breathing and try to let those thoughts float away.

Pat xx

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Fantastic advice and tips! You couldn’t have written anything more sensible and helpful. Thank you so much.

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Regarding what you wrote about no one knowing what the future holds - this is just so true. Remembering this helps to stop me feeling sorry for myself! Actually, something that I have found very annoying and even hurtful is when people have said something along the lines of “I hope your MS doesn’t get much worse”. My former manager said something like this when I left my last job. If people could only realise that this is the equivalent of saying “I hope you don’t have an accident”! Or am I being too sensitive and grumpy?!

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Hi Lapwing and welcome

Like you I am left side affected. I also like to do crafts which has become more difficult as I have lost the dexterity in my left hand. I have tried to adapt some of the stuff I do, for instance I don’t sew anything that is too complicated or difficult to handle. I have taken up knitting again, not very good at it, but everyone is getting beanie hats next Christmas.

Pat has given you some excellent advice and as she says try to focus on what you can do today (easier said than done I know). Some of the ‘mindful’ techniques are quite good in getting you to concentrate on today rather than what the future holds because that is a scary place that might not come to pass. My own technique is to put Classic FM on and find something to do with my hands like a bit of sewing or knitting.

Take care

xxx Sharon

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Hi Lapwing

I am sure from time to time we all feel fear, but ms is so unpredictable, nobody can second guess what is going to happen.

I knit baby clothes for the hospital and also sit and flex my hands, not sure if either helps that much, but I feel it helps me to be doing something constructive.

Physio will be able to advise you regarding exercises, so please don’t be hard on yourself, take one day at a time, and remember we are here to listen, and help when we can.

Welcome to the forum.

Pam x

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Hello Lapwing,

Like you it has been my left hand side most affected. The consequences have been rather profound considering that I gained LTCL of the piano and grade 8 cello at the beginning of the eighties. From a very early age I was consumed in the learning and performing of music. I also cycled ,iles and ,iles and climbed the peaks of North Wales. I’m still left numb by it. Fortunately my right hand is still quite strong so I have some control and ability left.

I think it’s important to look to the future and how you can shape it (rather than your MS shape it). I haven’t given up drawing or painting-I just have to use an easel and prepare things well. If you’re prepared to accept and adapt you will still be in control. I’ve been fighting this beast for about 25 years now and consider myself an expert MS warrior!

Best wishes, Steve.

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Many, many thanks to each of you. This forum really is a wonderful thing - the possibility to gain perspectives and advice from people who know exactly what I am talking about, how it feels.

My knitting has always been terrible, but I love to crochet. That’s quite fortuitous, since it requires less of the left hand!

Seabird - listening to music helps me a lot too. It’s almost like it helps to distract my brain from the tremor/stiffness in my left hand: The less attention I pay to that the better, it seems.

Steve - it is really inspiring to read what you write regarding acceptance and adapting and keeping on drawing and painting. I enjoy doing detailed drawings, but I suppose there is always the option of trying broad-brush, expressive art if that is no longer possible one day.

Thanks again to all you wonderful fellow warriors!

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Hi Lapwing

I see you, like me, have a tremor, don’t know if this info will be useful, but I thought it worth mentioning it in case.

I take propanalol for my tremor, and whilst it has not stopped it completely, it has certainly made it easier. Maybe worth having a word with your ms nurse or neuro, to see what they say. For the stiffness and spasms I take baclofen.

Wishing you all the best.

Pam x

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Hi Lapwing

like Steve I have playing music all my life (guitar, fiddle etc) and did a lot of gigging over the past three decades, but that has had to stop. It is the fatigue that prevents me. In theory I can still play, but I’m a bit scared since I haven’t touched my fiddle since October 2013, and haven’t felt like playing anything.

when our building work is finished I will have no excuse not to play because I’ll have a lovely music room all to myself, but I know i,lol have to spend some time getting my fingers back up to speed and strength, and I’m worried I’ve left it too long.

But one thing we all have is our computers. They are very liberating. Great for recording, composing and editing music for one thing. But I’ve also enjoyed writing, prose and poetry.

And as several of you have said, thank goodness for the Radio. It’s radio 3, 4 and 4extra here.

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Thank you very much Pam - it is really good to know that there are medicines available which can help with tremor.

Hi Kevadams - I definitely recommend picking up your fiddle again. I’ve played the fiddle since a young age and although I have stiffened up a lot, tremor doesn’t seem to bother me when I play. I suppose I am sad that it has affected my playing, but I still enjoy playing the slower stuff. I’ll never be as good as Martin Hayes or Maxim Vengerov now, but it’s still possible to express myself a little on it!

I find it’s best to take it easy when starting up again after a long pause, just play five minutes or so a day in the beginning.

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Hi Lapwing,

You’ve been given some great advice… I just wanted to say welcome to the forum.

Nina x

Yep, thanks for that, Lapwing. I intend to make a fresh start in the new year, and I know I’ve got to do it little and often. It does sadden and surprise me that for the past year I have managed to ignore totally the pastime which has kept me fired up for most of my life.

Kev