I’m having a real dilemma at the moment and it is going to sound daft I know, but I’m suffering increasing difficulty in walking. I was dx in 2003 and am not yet on DMD (waiting). I have a muscle weakness affecting my left leg with reduced muscle tone. I’ve seen physio, MS Nurse (who unfortunately is only part time and has a massive caseload so seen her only once since August 13). I’ve had relapses where I’ve had a numbness in my left leg. In November I suffered an increase in the chronic back pain I’d been experiencing for nearly 2 years and been to the GP about countless times but that my Neurologist was aware of. I finally, after 3 weeks of not being able to so much as pick up a tea cup without it causing me pain, got my GP to refer me for X-ray which showed up clearly that my back muscles were in an almost constant state of spasm, which at times reaches round to my front. it also showed that I have got at least 3 vertebrae in my lower back which have seriously degenerated and had a leak (rupture) on one disc which has now solidified. The vertebrae are damaged and have grown additional bone to try and repair themselves which is causing a constant popping/cracking in my back. I’m now in the wierd place where it’s partly down to MS and partly the physical changes to my spine that are causing the most difficulties. I’m no longer able to climb stairs (about 8 steps and I’m done), I trip, I stumble and I have nerve pain that is like being given an electric shock. I have a walking stick - I feel ok using it at home but I just want to know how to bring it out into the open so to speak. I’m 39 years old and I just feel like I’m going to have to constantly explain myself. My husband says to use it and ignore people’s stares and comments but I wanted to see how anyone else coped with this? I know it’s silly but I’m just lacking the confidence to be able to finally give in… any help? And how do I know if I’ve got the thing at the right height?
I started using a stick towards the end of last year, and it does seem like a big step going out with it for the first time! I work in a Primary school with 4/5 year olds and the endearing honesty of the children was a real help. They would say things like my Nan’s got a stick like that! (I’m 43!)
I have had numerous falls and trips and decided that I couldn’t hang on to my husband for the rest of my life! So I went out with sticky- my new little pal! I have found that generally every one I have come into contact with while using sticky has been extremely helpful.
So I think the right time for you to start using your little companion is when it feels right for you!
I had to use a stick during my second relapse in October as I was wobbly, and I wasn’t sure how I would feel. Far from feeling depressed I found it enabling as people were far more patient around me, they didn’t barge past me or think I was drunk etc. I found no explanation was needed, if anything people stared at me less as they didn’t wonder why I was going so slowly or wobbling anymore, the stick seemed to be their answer.
Hi I was dx in 2003 and am 43. I’ve been using a stick on and off for a few years. I started with back pain and after seeing my physio she identified my posture was wrong as I was leaning on the stick causing my back into spasm. She suggested using a walking pole (like hill walkers use). It has helped with the pain & posture and speeded up my walking. It looks trendier than a stock and can be altered for a persons height. When walking in crowds it’s like a parting on the waves as people move to one side. When to use it ? When you stop doing things due to the worry of distance or falling. All the best Neil
I’m 42 and diagnosed 2001 and I also have a stick for when I need it. I bought it as I was going to be in London using the underground (escalators and rude people don’t mix well) and I thought better safe than sorry. Like many people on here I got a funky patterned one - purple with dark purple splodges - cause if I have to use it then I’m going to make an fashion accessory out of it.
There are websites out there where you can get them with rhinestones, diamantes, custom designs etc (and space for a wee flask of whatever you fancy to keep the cold away). Your MS nurse should be able to help sort out the height for you as well.
So indulge yourself and get a stick to be proud of!!
If you are only going to use one stick, then pick up Neil’s suggestion of a walking pole.
The potential problem with one stick is that you may end up leaning toward the stick, and puttung too much weight on one hip.
A walking pole is better for keeping you upright (I used a camera monopod at first).
Later, when with one conventional stick all the time, a physio got me onto two sticks (to get the weight off one hip). A year on, another physio got me onto a 3-wheeled walker (rollator) to get me more upright in the front-to-back sense.
Posture matters - particularly if you have a spinal problem as well.
If using a walking stick helps, then use it. It will probably give you some stability and support, which equal a bit more confidence. Chuff what any onlookers think or dare even say…I doubt they will tho and anyway, who cares! It`s your life, your painful back and your safety that matters.
39 or 79…numbers dont matter…safety does!
About the right height to have the stick…a guide is not to have to lean over or hutch your shoulder to feel comforatble. I see so many folk hutching to hold their stick.
A physio will tell yo the right answer.
That back of your`s sounds soooo painful…you poor lass.
I started using one when my MS troubles meant that I looked more of a wreck walking without it than with it. Also to stop falling over - not a good look either. Alison
Google Switch sticks. A little pricey, but good designs that fold and are made to same kitemark standard as the NHS ones. It is a difficult time because it’s ike confirmation of the illness. remember, they are enablers not disablers, also people give you more space, or hold the door etc, which is a great help when you wobble. My garage is like a mobility shop, scooter wheelchair etc, but i need different things depending on how i am. Hard to come to terms with, but when you do, it sort of gets easier to use the things. Good luck, try to be judged by yourself and not others, i struggled with that too,but am about there now.
I’ve actually borrowed my mum’s, she’s 82 but stubbornly refuses to use it, but my dizzies have been so bad recently I’ve had to give in. The upside is that I actually went out yesterday afternoon with hubby and dog, and managed a blissfull couple of hours out of the house, storm/sea watching, and felt reasonably secure. I’m fed up of being stuck in the house, afraid to go out alone, wondering how the hell I’m going to get from A to B unaided, and people looking at me funny 'cos I’m so unsteady on my feet.
Hi Lou Lou, sorry to hear you’re having a hard time of it lately. It’s so annoying when you have to decipher which symptoms are due to MS & which are general wear & tear. I’m a little older than you but felt the same when I had to start using a stick, mainly for balance although I do find myself leaning on it heavily if I’m particularly tired. My solution was to get the brightest, funky stick I could & now I have a few! I match to my outfits if possible!! Google switch sticks & have a look. I mean if you have to use a stick make it as bright & fun as you can. People stop you & ask where you got your stick from not why you’re using it!
I had the same dilemma last year when I had a bad relapse affecting my mobility. I hate being shut indoors so, like you, I asked for advice on here, took it and bought myself a funky, bright red stick. I’m only 5’3 so had to get a shorter length one and it’s a folding stick so it goes in my bag when I’m on a train or indoors.
I was told the correct height for a stick is that the handle should be level with your wrist when you are standing straight and at ease. That way when you hold it your shoulder isn’t leaning over and nor is it forced too high when you are using the stick for support. If you find yourself leaning heavily on your stick then that isn’t the correct posture and will make your back problems worse. As others have said, you can ask your physio to check that you are using your stick correctly.
I was very nervous about using my stick outside for the first few times as I am only 48 and felt much too young for a stick but on the whole have had positive experiences. It is so much easier walking along with the stick for support and does alert other people to the fact that you need a bit of space and consideration. However, I live in a seaside town and during peak tourist season it didn’t ‘part the waves’ through the crowds all the time. Sometimes tourists are so wrapped up in having fun that they don’t notice a short, wobbly woman trying to get through. However, stopping dead in front of them and fixing them with a ‘Paddington stare’ seems to do the trick. I absolutely refuse to step into the road to go round them when they are walking 5 abreast on the pavement!! I did get much better consideration in London and Cambridge though …
