dmarucci 06/03/17
Last reply 11 months ago
Wheelchair/scooter needed

Hi
So I have a question – with my legs and balance affecting my walking I’m in 2 minds about what to do. The way ms is progressively getting worse I know I will end up with a need for both of these.
I have fought it but I’m starting to fall more often now. I need to walk with someone at most times. I feel free in a scooter tbh but I’m only 27 and I feel like it’s for older people 🙁
I know who cares what people think well that’s the thing I do care. So my question is should I just swallow my pride and use these aids? Or carry on struggling to walk?

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cameron
11 months ago

I should do neither until I’d looked at other options. First off, get yourself to a neuro physio for a gait assessment. I’ve just replied to a post (under ‘Should I see a physio’ or similar title) today where I wanted to explain what a neuro physio can do. It may also be that if your core muscles can be strengthened, you’ll be able to walk more easily and it would certainly reduce your falls. Physio exercises can help with this, as can any of Pilates, tai chi, yoga and swimming. You (we all!) need regular exercise and if you do a search on the Barts MS research site, you’ll see that they now consider exercise as a strong ‘modifier’ of MS. If the physio recommends a stick, you’ll be shown how to use one (I know, sounds daft, but there’s a right and wrong way!). Another possibility may be to start Functional Electrical Stimulation, especially if you have a drop foot. Yet another is to investigate leg braces/splints. Finally, what does your neuro team recommend? Unless you have progressive disease, you should be able to access DMT treatment which hopefully will slow down deterioration. No quick fixes but all possible. xx


cameron
11 months ago

PS I have just read your profile and see you’re on Gilenya. Definitely tell your neuro your concerns because it may be that you need to change therapies.xx


tracyd
11 months ago

@dmarucci
Its worth exploring a number of options.
– Why are you on such an inefective treatment in this day and age ? Gilenya isn’t a prime brain protector or progression stopper, its a sticking plaster at best. At 27 you have a long life ahead of you which needs to be protected and that means the most effective treatments from day one as your first line of defence not waiting ‘until it’s bad enough’ and hoping at that point you can stop it getting worse.
– Neuro Physio – absolutely get one and see what they can do, a great NP on your side can help so much with Gait, balance and strength problems
– Some kind of mobility scooter for long efforts – but something convenient that you can up away that doesn’t take over your life and your space but it should be for the times when you absolutely need it not as a replacement for trying without xxx


markp
11 months ago

@dmarucci
My walking/falls/posture had led me to not going out at all. My walking stick had been of help for some time; but no more, so a wheelchair had to get me to appointments.
Talking with my neurologist (at one such appointment) he suggested using a rollator, to get me back on my feet, the physio got me one and so long story short, it has! Using muscles I forgot I had has me standing straight & tall once again. The exercise bike just didn’t have that effect.
I have no fear of falling using it, and if I run out of steam, the handy built in seat is there to plonk myself on until I’m ready to go again. I still tend to ‘furniture walk’ indoors, but I am even without the rollator standing firm.
I’ve even escaped my house on occasion now, I’m still shadowed (for the moment) on my journeys, but I’m getting there. Saw my MS Nurse the other week and she was astounded at the difference in me. No wheelchair, just me walking under my own steam with the rolloator.
Even been the pub with it… marvellous!


mrratcatcher
11 months ago

I don’t recognise the term ‘neuro team’ having only ever seen the one Neurologist who told me of the diagnosis and then witnessed my slow decline every 6 months since 2012. Despite trying a DMT (Tysabri) and it failing I have not been told of the support mentioned. I am a member of the MS Therapy Centre in Exeter and have tried Hyperbaric Oxygen Therapy (no positive effects) who I note has a Physio certain days seen by appointment but I admit have never had the courage to phone him. My condition physically I feel is deteriorating and I have purchased a mobility scooter (Quingo Flyte) which fits into a neat docking station in the back if my car (you do lose the use of the back seats). I use a walking stick and stay indoors most days using the walls and furniture to avoid falling. I can see there will be others like me who avoid going out and therefore never meet to share sympathies – this seems a good place to join minds.


chloeautumnx
11 months ago

I have mobility issues but I’m on lemtrada so it’s keeping disease activity at bay and I use an FES machine, a crutch and I have a wheelchair for those really hard days or a trip out to the zoo or whatever. All of these work for me and I am a strong believer in trying to use it, or you run the risk of losing it. X


cameron
11 months ago

@mrratcatcher Your comments are worrying because they suggest that you’re not getting the clinical help that we’re all entitled to. A neuro team should include at least one MS nurse and you should have access to him/her precisely because MS can be so changeable and needs a multi-disciplinary approach. Your gait needs assessing, you’ve failed one DMT – but why were options for other drugs not considered? Did you refuse them or were they never offered? As the professor on the Barts MS Research blog notes: ‘Untreated MS gets worse’. So really, it’s not surprising that you’re feeling on a downward slope because you are in that ‘untreated’ category. Under NHS guidelines, you are entitled to be treated anywhere in England: it sounds as though you should be asking some serious questions and if there are no answers, consider a change of hospital. However inconvenient that would be, how does it compare to the inconvenience of losing your mobility…..? x


mrratcatcher
11 months ago

@cameron It was approaching 18 months of receiving Tysabri every 28 days. The only things it gave me were a headache for a couple of days after each infusion. After feeding back to my Neurologist that I felt it wasn’t working he booked he in for a MRI which I had with the injection to highlight new activity – and that confirmed that the MS was continuing despite the DMT. He took me off and re-classified my status as ‘Secondary Progressive’ with the warning that apart from steroids when it flared up, there currently was no treatment available. My decline continued, the opportunity for retirement on ill-health grounds was raised and I took it gratefully. I agree that the stress of work aggravated my MS – just turning up at a given time and sitting slumped in a chair was too much effort whilst my colleagues did my work around me. I live in rural Devon and from the outset chose a hospital across the theoretical NHS border in Taunton for my maintenance. The Neurologist complains of being swamped when appointments are cancelled and lately the 6 months have increased to 12. I saw a MS Nurse initially but found her a waste of time (my opinion). I opted to go private to try Fampyra – cost me £180 for a 10 minute consultation in a Nuffield outpost and the 1st month’s delivery was free – but yet again I felt no benefit and cancelled the program. Since then Ocreluzimab has been mentioned but nothing more than that. In having MS what does having good support from the NHS look like?


cameron
11 months ago

@mrrarcatcher – my sincere apologies. What happened was that I’d been so interested in reading the post that I omitted to notice it was from someone other than the original person who’d posted. Just after I’d pressed the send button, I did see it was from you. I quickly looked at your profile, saw you were SPMS, so called back the post and deleted it all. I thought that was it sorted, so was upset when I saw your reply on my email this morning. Of course the diagnosis of SPMS changes everything! The only helpful avenues I can think of, both of which have been really good for me, are neuro physio and referral to orthotics – the two often being connected. In my hospital it’s one department but with separate clinics. The neuro physio would analyse gait in depth and would possibly recommend a brace and/or stick. Then it would be over to orthotics to take this further. I certainly think that you would never regret getting a private neuro physio assessment if that’s the only way to have your mobility analysed in depth. I agree with you that the quality of NHS service is a postcode lottery. It was for that reason I changed hospitals and my MS pal who opted to stay local is testimony to the inadequacies of the system. Even at my (London) hospital I had to fight to get the up-to-date orthotic that I’d tried privately. Another thought – has Functional Electrical Stimulation been mentioned? I couldn’t get this on the NHS because my local PCT wouldn’t fund it, but it wasn’t too expensive given the benefit it brought. I can give you lots of info on that if you’re interested. Anyway, all the best and again, sorry! xKay

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