I need a bit of advice please. My MS is relapsing a bit - my walking has gotten worse and my left leg feels very tired. My concern is this. I need to go to London for work and will need to use the Tube quite a bit. Since my walking has got worse - should I buy a stick.
The reason I hesitate is that several years ago a girl I worked with - who also has MS with similar symptoms to me - had a relapse at the same time as I did. I did the whole grin and bear it thing but she was going on the Tube and was worried about her walking so bought a stick so people would see she has a ‘problem’. Now I know it was probably a coincidence but my MS symptoms got better & hers didn’t but part of my head keeps saying that 'cause she started using a stick, she was giving in.
Now I know that using a stick is nothing compared to some people here and what they have to go through but for me, it is a significant step downwards. I’m not on medication and until the classes closed for summer I was still belly dancing. I would not be able to dance now and it annoys me, at the minute walking downhill or down steps requires careful steps.
I don’t really want to start using a stick and part of me thinks that the people on the Tube will mostly take no notice anyway (I used to use it quite regularly so I know how bad it can be). I suppose I really looking for people to tell me that by refusing the stick I’m not being stupidly stubborn.
Hi Jellybellkelly, it’s only you that can decide whether a stick is a good idea or not. Like you I don’t believe too many people would take notice of the stick and make room for you or even slow down and not barge past you cos you were holding them up. Some people seem to think their journey through life is more important than anyone else’s. Using the tube you are going to be walking up and down stairs a lot so if you were to use a stick I would be more inclined to advise you to use it to help give you balance rather than a pointer to other travellers that you may need more time or space. If you decide not to use it and decided after the trip that it would have been better to have used it then you know for next time, if you do decide to use and find you don’t need it then you can always leave it back at the hotel or wherever you are staying. Good luck with whatever you decide. Linda x
Hi jellybellykelly, I know exactly what you are saying. I went through the same thing myself, I wasn’t a pensioner and did not, no way want a stick, I’d just muddle on! However it was my MS nurse with some blunt talking, who swayed me. She told me to get a folding one , a fancy folding one on ebay, put it in my bag to have if I needed it and no one would see it if I didn’t need or choose to use it. Then she said that if I wanted to get from A to B and was struggling, perhaps falling, perhaps looking drunk, perhaps hurting myself and simply perhaps just not getting to B like I wanted to do, then if by using a stick, getting to B became achievable, safely, more easily, then what was more important to me?..not getting where I wanted to go and doing without all that that meant to me to lose out on that or use a stick and get there fine?..I bought a zebra stripe and a paint splash sticks and I get where I want to go!..ok very slowly and not without stumbles!!..Only you can decide as Linda said, but if you are looking for someonelses similar experience then here is mine BTW, my space bar isn’t working, so sorry if this looks a bit weird :-s Jools X
Hi I know what you mean about using a stick I too struggle at time especially going downhill and have on occasion used a walking pole as its doesn’t look like a conventional stick load of able bodied people use them too! But it does feel like a step backwards but hey if you need it just go for it if it makes life easier and if could be very useful to whack folk on the back of the legs when they step in front of you he he!! good luck with whatever you decide to do…Emma x
I had the same dilemma back in March when I had another relapse affecting my right leg. Part of me knew a stick would help but the stubborn part of me didn’t want to give and didn’t want to be that old so soon. I too turned to the good folks on here for advice as it was a huge emotional hurdle thinking of using a stick.
In the end, I took the sensible option and bought a stick. I had to get a shorter length one as I’m only 5’3 and mine is also a folding stick so it can go in my handbag in its storage pouch when I’m not using it. I went online and found a pretty design I liked as, if I had to have to use a stick, it was going to be eye-catching!
I had to use it full-time at first but now I do try the first 500m without it and only get it out if I feel wobbly or fatigued. Like you, I don’t want to become reliant on it and if anything I have tried to get by without it a bit too soon and had a few dodgy moments! I have learned not to leave it in the car now but that still doesn’t mean I automatically get it out for every little bit of walking …
I just wanted to tell you my story as I came to learn that getting a stick isn’t giving in - it is just keeping safe. With a folding stick it is like having a bit of insurance in your bag so that if you need it, it’s available. Btw, I’ve been to London a couple of times since March and nobody seems to notice especially the younger people. It certainly doesn’t guarantee a seat on the Tube but it does help with my balance on the stairs etc.
Hi, I have what I call a daft left leg and whilst I can walk my leg tires quite quickly (well quick for me) whereas before my last relapse I could walk for miles. I purchased a stick to put in my bag just in case…I only tend to put it I there when I know I’m walking further than I’m used to and always do that on holidays so the stick is always in my bag. I think having there gives the confidence to walk maybe further as you know it’s there in case. However so far I have not needed to use it. I feel in winter if we get one like last years may need it as wind etc affects balance and walking. I don’t think it’s going in at all. I think its a way of keeping your independence. I have a four year old and I got one as I thought I don’t want to be able to have to say no we can’t go there for fear of not being able to make the distance etc. from what I have seen a stick can get people further than without that stick. Xx
You could be me a few years ago. I ‘gave in’ and it’s the best thing I could have done!
I don’t have a stick, it’s a hiking pole with a walking stick style handle. It’s a huge thing to think of using a little old lady stick. An ugly grey NHS stick? - no way! A flowery stick you can get from local high street shop? - I tried, but I couldn’t force myself to use it.
So I got a leki hiking pole - do a search for it online to get all the details. I can set it at exactly the right height for me. And also longer when I’m going down hills or shorter going down hills. It doesn’t make me look like a little old lady! And I get the stability I need which helps me cope witih my balance problems and a right leg likes to trip me up!
Give it a go - it’s a huge thing to deal with emotially, but the way it’ll probably help you get about will quickly help you get around and enjoy you life a bit more!
I didn’t really have a choice. MS stopped the pain messages from my right leg from reaching my brain. This affected the knee tracking and chewed up all the meniscal cartilage. I have severe osteoarthritis now and a stick is essential, as it takes a little of the weight off that knee.
I can walk much further and faster with it - it’s a left-handed folding stick and when I’m tired, I can lean on it. I tried walking poles, but the ferrules came off and I haven’t found any to replace them.
It’s an insurance. I know that at times my balance isn’t as good as I’d like it to be and the stick stops me from falling.
If you have a bit of a mental block over this, just tell yourself (and/or other people) that you injured your leg mountain climbing or skiing or something wild and energetic. No one will know the difference.
Hi Kel, I hate it when people have done something to help themselves, or be safer, or just to manange a difficult situation better, then some one uses the words given up or given in.
This is defo not giving in of any kind. It is an acceptance that you need a bit of help…however it comes.
Yes, I know using a stick at a young age, isn`t what you hoped your life would be, BUT.and I do speak from personal experience…using/doing anything that keeps us feeling safer HAS to be good.
Give not one jot of your valuable thinking time and energy in wondering what others may think of you.
Yes, I am talking like Grandma Polly, but I only have your well being in mind.
Having a stick could just be what you need, when someone stands on your toe or pushes you out of the way, to get a seat on the tube.
Hi Jelly, It is hard to accept that you may need something to help you cope, but sometimes you need to, not give in but realise that the stick is simply a tool that will help you. I have a scooter, now that was a difficult one to accept, but it’s brilliant & I love it. Yes it is one of the bigger ones & I fly about the village, see to my horses & that includes going into the field on it…my dog runs along beside me & sits in the foot-well for a break now & then…the local kids think it’s ‘cool’…If you take the plunge your not giving in, your making things work for you…
Thanks for all the advice - and Poll, thanks for the young age comment (I’m 42).
I’m off to Glasgow the week before my London visit for a two day conference. The train journey is about the same time as to London but the conference will involve a lot of sitting (and listening to probably a few boring presentations). I think I’ll use this as a trial run for London which is only 1 day but a very long day (5:00am start for the train, back in house about 11:00pm).
I think it maybe that I’ll buy a folding one for my bag and only use if necessary, although I do love the weapon usage Emma, sod the aid to balance, I might just get one for that reason hehe. Maybe I can also get one with a detachable handle which hides a hip flask - thats my Northern Irish roots showing.
my wife and i took a friends dog a walk in the rain,when rain stopped,i started to use umberalla as a stick,made a big diffrence to my walking,then i got a walking stick,and would not use it in home town,too proud,brain kicked in ,and i started using it everywhere,i now use a delta walker or crutch,i find people give you space and time to do things,if you feel comfy using it ,it deffo is a help
I have no personal experience or advice to add, but would just like to say thanks for starting this thread.
I am not dx (awaiting Neuro appt) but have been suffering with really bad balance problems and now a weak, heavy leg for some time now. I have thought about getting a stick, but as I am yet to be dx and have no idea what’s wrong with me, I thought people would think I was making a fuss about nothing. However, when I saw my GP last week he asked me if I used one and was wonderintg how I managed to get around without one (truth is, I don’t go out unless I have my lovely hubby to hold on to!)
Having read this thread I can see how silly I’m being, and will speak to hubby and see how he feels about me getting one…just so we can do more things together without him having to have me clinging to him for dear life the whole time!
Have had a quick look previously on-line and found a lovely purple one I quite fancy!
I’m 43 and have ppms so I obviously don’t go into remission. My physio gave me crutches as she was so concerned with my balance and gait but I don’t like them unless really necessary. I bought a folding stick like many of the others and it has given me so much confidence. I need it all the time but it gives me freedom. You wouldn’t question wearing glasses to help you see, a hearing aid or even a plaster cast so why get upset about a stick? If anything it allows me to go out safely more than I did before.
Secondly, I’m a tad older (43) and understand how you feel, it’s horrible to suddenly lose your independence.
I found it really painful when I bought my first stick a few months ago. I now have 3 and find it quite funny that ‘collapsible’ was an essential point when buying one (I haven’t put one in my bag since week one). I hated to admit I needed one in the first place but apart from using it for support with my dodgy leg, it’s also balance back-up with my dodgy head and most importantly, it warns other people to give me some space.
It just goes to show I work with some polite people as they still hold doors when I’m wobbling along and I wave them to leave it and they shake their heads and wait.
Get one if only for a safety net… I remember leaning against a glass window of a restaurant when my legs started failing one afternoon - ironically, I was walking back to my car as I’d just taught 2 classes at the gym and I just wanted the ground to open up and swallow me!
Purpledot - do get one, I didn’t until after I was diagnosed and had been struggling for months! It really isn’t worth it and I think I’ve probably done some damage by over-compensating.
The only positive is that after my first fall, I went to see an osteo and she wrote to my doctor saying I needed an MRI
Get a stick! It tells most people that you have a mobility problem - and that the odd lurch is not down to a wee drop of Old Bushmills. Mind you, you will also come up against the idiots that try to walk between you and the stick, and then they do look surorise when it accidentally clips an ankle.
Hi JellyBellyKelly, It took me a full year of not leaving the house, to admit that I needed help !! So, I know exactly what you mean. You are definitely NOT being “stupidly stubborn”. It can be difficult to accept that you need an aid to help you do something that once came so naturally. Of course, having now been out of the house, unaided, I would absolutely say, do what you need to do to make life easier but I all too easily remember the quandary. Catherine Xx
just to update - bought a walking stick today - delivery next week. Still might chicken out and not use it but its there. Its a funky purple one and in October I’m heading down to see my niece - more train journeys. I’m going to buy some sticky bling so Missymoo (shes 3 so I can still get away with calling her that) and I are going to Pimp My Stick. If you see me on the train coming back up - look away, the reflection from the stick could be blinding
Fingers crossed my leg will be better by October anyway. Belly dance class starts again, I have too many brightly coloured costumes to let them go to waste - and yes I have worn that colour combination!
BTW, my space bar isn’t working, so sorry if this looks a bit weird :-s Jools X