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Might need a stick :( - advice please

On the whole, I have been very well for the past few years and have been feeling pretty pleased with myself. I have a numb left hand most of the time but it’s not my dominant hand so I manage. My toes are usually quite numb/tingly and I’ve become used to that too.

However for the past three weeks or so my feet have become numb a lot more often and for longer. Now they are numb as soon as I’ve stood in the shower for five minutes and the numbness goes right up my right calf so I feel as if I have a plaster cast on. My left arm is numb and stiff right up almost to the shoulder and my left fingers are completely numb. In fact I very nearly picked up a hot casserole dish the other day as I felt like I already had the oven glove on - luckily I have learnt to concentrate when I’m cooking due to past incidents so I just stopped myself!

I did mention this to my nurse at the end of February and she logged it and said if things got worse I could call back but neither of us were keen for me to have steroids just yet. At the time it was just my feet that were going numb and it wasn’t progressing up my calf. My fatigue and brain fog are getting worse too.

My main concern is that I cannot walk very far at all now because I keep stumbling and I’m worried I’m actually going to fall. I work at a school and I give it 10 minutes to be sure most of the kids have gone before I walk to the car so they can’t hurtle past and knock me off balance as my balance is poor at the moment too. I’m beginning to think I may need a stick but I don’t know how to use one and emotionally it’s a huge hurdle for me because up to now I haven’t looked remotely disabled. I know it’s stubborn pride but that’s the way I am. I suppose what I’m dreading is all the people who think I am healthy will ask what I have done to need a stick and I will have to admit that I have a lifelong incurable condition. I guess I haven’t accepted things as well as I thought I had because even typing that brings tears to my eyes.

So shoot me down in flames and tell me I’m being ridiculous because I need to hear it. Also I need advice on how to use a stick.

My mum’s stick is still sitting down at dad’s house and I’m sure he would be glad for me to use it (mum passed away 14 months away) but I haven’t a clue how to use one. Do I use it on the good side or the bad side? Any advice gratefully received and I will try it in the privacy of home first as I now have a large living room and even going up and down the room twice is a struggle! I suppose I will have to find my sense of humour again. The other night my son and I were laughing as my right leg had the twitches and the left one was stiff and seized up and I said I was going to go round and round in circles if that continued for long

Tracey

You hold the stick in the hand on the other side from your bad leg. You swing the stick forward at the same time as you move your bad leg forward. This means you’re supporting yourself with the stick and your bad leg when your good leg is moving forward. You will get it with only a small amount of practise - but it is definitely worth doing that small amount, up and down your living room.

I really resisted using a stick but once I started using one, I noticed lots of other people use them too - people who’ve twisted their ankles or pulled a muscle, older people whose sense of balance has deteriorated with age, people who’ve got a problem with their inner ear, all kinds of people. Most people won’t ask why you’re using it and you don’t have to answer the people who do ask - you can say something like “I’m just coming to terms with using it and don’t want to talk about it at the moment. Thanks for asking”.

For me, using a stick or other mobility aid has been a problem because it didn’t want it to be true that my disease has got bad enough that I need one. I don’t even want it to be true that I have MS, even though I know I do. Maybe it’s the same for you, or maybe there are other reasons. It’s good to work out what’s going on in your head on this (and everything I suppose) because once you understand what you’re feeling, it’s easier to cope with.

You can try and work it out yourself, or talk to friends or family, or post on here or go to your GP or local MS centre to get counselling. Whatever you do, I’d say that understasnding what you feel is really important and that it makes coping with the vile things that come with MS possible. I hope this helps

Thank you for your reply. I did come to terms with it before, when my legs were really painful and I couldn’t walk very well but that was 4 years ago and they did eventually get better so I have forgotten how bad things could be. I suppose I have to come to terms with it all over again …

It’s like a roller coaster and I never did like them . It helped to talk things through with local MSers before so maybe I’ll try that again. Thanks again,

Tracey

First of all - I think that every one of us who are using a stick felt like you do when they started to need a stick. I certainly did. Eventually I ‘gave in’, as it really felt at the time.

I now use a stick all the time when I’m out and about. There is a huge variety of pretty sicks these days which you can adjust to the right height for you. No ugly NHS grey stick for me!

I use a walking pole type stick which can be adjusted to exactly the height I need. I started off using a standard hiking pole because I was walking up a steep hill to work and it’s very very useful to be make the stick very long when going down the hill, and short when going up the hill. The adjustable sticks you can get from Timpsons the shoe repairers that seem to be in every high street these days can’t do that. Now I have a hiking pole with a proper walking stick type handle.

The main things to make sure you have you stick at the right height for you. When you stand up your arms hanging to your side the handle of your stick should be level with the creases of your wist. The idea is to keep your shoulders level and can put your weight easily on the stick without bending.

As far as which side you should use the walking stick the rule of thumb is use the opposite hand to the leg with the problem. So you spread the load on the bad leg to the stick. I use a stick mainly to stop me stumbling over and losing my balance. My right leg is the one that causes me problems, especially when I’m fatigued. Which can be after a few minutes slow walking! I hold my stick in my right hand because I have a problem with my left arm which makes using that arm impossible.

When I finally started using a stick the people on this forum made me feel so much better about it. I’m sure you’ll get the same suggestions of how to jazz up a stick as I’ve seen on this forum in the past. Think tinsel at Christmas :slight_smile:

I think one of the worst things about MS is that havng to come to terms with things, then having to come to terms with new things, then having to come to terms with new things … I’m still working on accepting where I am at the moment, I realise, after writing what I did to you. So thanks to you too.

Thank you, I knew this was the place to come to help get my head round it.

I’m thinking of using mum’s old stick because it is purple with flowers on it and it is height adjustable and I’ll have a bit of her with me for moral support (and I’m still hoping this is just a temporary blip). I had forgotten how crappy the left hand is; it constantly drops things as it has little feeling so like EllenC I may have to use it in the right hand just because that’s the good hand even though that is also the bad leg. I suppose as long as I swing it at the right time all will be well.

Now I just have to deal with the emotional side of it and give it a whirl. I’ll let you know how I get on, if a blubbering wreck appears in a few days’ time that’ll be me :wink:

Tracey x

I know it can be hard to get your head round these sort of things, One thing that helped me was to get a folding stick that I could put in my bag but was there to use when I was getting tired and needed it more. That migt help you to at least in the begining.

Hi Tracey, excellent advice on here,but what I will say is that you should have a wrist strap on the stick.You’ll find it makes things easier when you’re stationary and need to root in your handbag etc

Good luck,

Wb x

Hi Tracy,

Someone asked about sticks last week. I got one as I was going to the Olympics and didn’t want to fall over and show I had a bit of a disability. I got a collapsable one so I can get it out of my bag when I need it. Haven’t used it much recently but walking is getting worse so might polish it ready for use again.

Nice to use your mum’s stick, sounds pretty too. Why not try it out somewhere where you don’t know anybody - so you won’t get asked questions. I’m thinking of using a shopmobility scooter but thinking about using at shopping centre quite a way away before I use one in local town. Then noone will know me.

Difficult decision but good luck,

Jen x

Thanks everyone for the advice, I will take it all on board. I promise. The more I have thought about it all day, the more it makes sense to give in and at least try with a stick.

Tonight my son and I went out for a meal (he drove which was nice) and then we popped into Sainsbury’s so I could pick out my Mother’s Day presents. I did two aisles and then had to sit down while he did the rest of his shopping and paid. I icouldn’t even make it to the seating area without stopping as my right leg had turned into concrete from the knee down and was quite heavy and painful to move.

Think I might have to have those steroids after all as, if it progresses any further, I won’t even be able to drive.

Tracey x

Hi tracey, I see you are coming round to the idea of using a stick.

I know hun…it can be a huge blow to your self image, but honestly you have to think of your safety first.

i see a lot of people using sticks, which are the wrong size for them. They are either walking with a shoved up shoulder, when their stick it too long, or leaning forward or over when their stick is too small.

Try to get some advice from a physio about the right height of a stick for you, eh?

luv Polx

Thanks for your reply, Pol

I hadn’t thought about asking a physio. I was never referred to one even when I had the ‘biggie’ relapse and could barely walk. My mum’s old stick is height adjustable and folding and is actually quite new. She didn’t get much use out of it before she died and it is so pretty. It’s purple with flowers on it. I did see some advice on a website about checking if the stick was the right height in comparison to your wrist so I was just going to follow that. We do have a physio who comes along to our local branch meetings so perhaps I’ll ask for her advice. She seems quite human and I can cope with that. I’m more of a ‘stick the kettle on and get on with it’ type of person anyway.

Well there goes the school bell so it’s time to pop off to the doc’s for my steroids, yay !!!

Tracey x

hi tracey,

i felt the same as you about using a stick…i felt it made me old before my time, but as both my legs are permanently numb i have to use it to go in a straight line when i’m out, otherwise i’d be bouncing off walls (or in the road under a car). got myself a funky one with a glow in the dark squidgy handle - my children think it’s cool! when i first went out with it, especially up to school, i had lots of people asking what i had done to my back/leg etc. it was almost fun to watch their faces when i said “actually, i have ms”. i got lots of bunches of flowers out of it! :slight_smile: once it’s out in the open it soon becomes old news and it soon becomes insignificant. now i love my stick as it helps me continue to be me.

hold your head up high doll and rock that stick!!!

vicky xxx

HI Tracey - I’ve bought a folding height adjustable stick but I haven’t used it yet because I feel embarrassed! I walked down town today (about 5 mins at pre MS speed) which was not too bad, but getting back up the hill was quite a struggle. Last year (before dx) when we were away on hols I took my Dad’s walking stick (he died several years ago) and using it was OK because I wasn’t going to meet anyone I knew and - surprise surprise - it was a great help! I couldn’t have walked around as much as I did without it - so why is it so difficult to use the foldable stick (which can be hidden away in my bag when not in use) that I’ve bought for me? Daft isn’t it? Hope it helps to know you’re not the only one struggling to get your head round using a walking stick and hope you’re able to ‘give it a go’ sometime soon.

Hugs,

Hazel

Hi Vicky and Hazel

It’s silly, isn’t it. I have weaved my way home a few times now and giggled my head off when the wind was strong and blew me off course even more than usual so I’m sure my reputation is completely shot in this neighbourhood. (My previous neighbour had reported to her son and husband that I was drunk at 3.15pm when I had the slurred speech until 3 days later I was hospitalised and she realised I was ill!) I don’t care if they think I am drunk but I care if they see me with a stick - even I can’t work out what is going on in my head!! I have told my next-door-neighbour that I have MS just last weekend just last weekend and it wasn’t such a big deal. They have health problems (of course, as they are late 70s - 80 ish) but just shrugged and said ‘we all have our crosses to bear’. They did ask what it was and I explained in very simplistic terms for them and they said it sounded horrible but they were glad I was okay at the moment. (I was actually telling them as I knew things were getting worse and thought it would be a huge shock if they saw me at my worst!).

I’m sure I would be fine using a stick where no-one knew me, just like I don’t mind wearing a bikini on holiday but wouldn’t dare to do so on the beach in my home town! Maybe I need counselling for lots of areas in my life …

I intend to practise with the stick over the weekend and if I think it helps and I don’t look more stupid with one than without then I shall use it. I’m sure it’s better to look daft with a stick than look daft laying on the floor. I’m not too bad indoors where the floors are smooth but outside is a whole different matter, just the slightest little bump or incline and it throws me off balance or causes me to stumble a bit at the moment so if a stick helps, I’ll cope with the embarrassment. It can only last so long surely?

Tracey x