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?
Hi Loulou, I hope you have gained some confidence on ur stick. I was diagnosed only last year but my ms has affected my mobility quite rapidly. I now use two sticks when I’m bad and one for mostly every day. I also have had to go through the trauma of choosing a wheelchair (I am 30) because I cannot get round the supermarket. It may seem embarrassing at first, trust me I felt the same,but you cannot suffer for the benefit of other people. It will draw less attention to you having a stick than walking ‘funny’ people will ask ’ what have you done there?’ Regardless if you have a stick or not. I used to feel a bit uncomfortable saying I have ms but that is the fact,you cannot hide it and you cannot help it. If people want to stare, let them… stare back!! You will soon gain confidence when you have used it a few times. I am 5ft 9 and have my stick on the tallest setting so I’m not putting all my weight on the stick, it’s easier to walk that way. Just put it where it’s comfort for you. Hope this helps and stick it to the sticks!!!
Walking sticks on line are good http://www.walkingsticksonline.co.uk/ lots of colourful sticks and a guide that explains how to work out the height of the stick you need. If you are diagnosed with MS you should be able to order a stick from them VAT free.
Don’t be shy, get that stick.
At your age, it tells people that you have a balance problem. Some may suggest a walking pole as being more use - I have only tried this with a camera monopod, but I guess that it could be easier (and more adjustable).
I started using a stick almost from Dx (at 70) and in the last two years I have gone from one stick to two, and from two to a three-wheeled rollator (choice of little old ladies everywhere). The neuro-physio was a but reluctant to suggest the rollator, but I am glad that she did - so much so that my NHS one lives in the car boot, and I bought one for use in the house.
Bottom line is simple - if it works for you, use it. I would rather look a bit infirm, than fall and break a hip.
Hi Loulou - I’m in the process of getting used to using a stick. This time last year I hardly used it at all - carried it, folded up, in my bag ‘just in case’; but now I use it all the time. Don’t like it much - but it sure does help a lot! Comment from my husband was “it’s part of you now - what you need to get about, so don’t worry what other people think, just embrace it”. That’s kind of been helpful … I take a deep breath and tell myself that I’m going out now, so need to use my stick. I bought a black one so that it would fade into the background and people wouldn’t notice! - that’s a bit crazy isn’t it, but our brains and emotions do strange things huh?
I wish you well in learning to see your stick as a ‘friend’.
Hi I am a walking pole(s) user. I used to have sticks but back spasms and leaning on my stick got me transferring to poles. My spasms have now gone and my gait & speed has improved. I use a chair on longer walks due to pain / tiredness. Using a stick seems to mean people give you more space and they are politer / more helpful. I am 43 so a little older but only look 23 Regards Neil
Hi Loulou, I’m 34, have had to use a stick since October last year, I was VERY anti-stick to begin with, stupidly felt it was “giving in” to my condition! I see how ridiculous that is now, if I had diabetes, I wouldn’t consider taking insulin to be giving in, and it is the same thing, something your body needs to be able to carry out normal day to day life. I won’t lie, people do look, and often ask, what have you done? Most people are completely cool if you say MS. I have experienced situations where people have moaned - so that I hear - about my speed - I am glacial! But I am not going to stay home, and give up in going out because it inconveniences the occasional person. Plus, I have been stubborn, not used the stick and consequently falling. Trust me, it’s less embarrassing to have a stick, than it is for complete strangers to rush over and try and help you up after taking a trip! Embrace the stick! It is the symbol of your independence, and your determination to get on with it
Regards Neil