I’m relatively new here and would appreciate anyone’s advice about mobility aids – especially wheelchairs. I’m 34 and was diagnosed with MS in April this year. I also have nerve damage (transverse myelitis) at the bottom of my spine. I have sensory loss, muscle weakness, and frequent bouts of non-control to the left leg and saddle area. I also have foot drop on the left.
Currently, I can manage to walk about three steps on my own. With a stick (held on my left/weaker side for counter balance) I can manage about 10-15ft before needing to rest because my symptoms or fatigue get worse. Sometimes this rest can be for as little as ten seconds; other times I’ve known it to be more like ten minutes. That’s fine for getting about the house, room to room, slowly – but for going outside it’s not so good. It takes a great deal of work to socialise and I’m starting to get anxious whenever someone asks me to meet them for lunch/a cuppa because I worry about mobility and fatigue. Does anyone else get this?
Members of my medical team have advised me about getting a wheelchair but I don’t know if wheelchair services will be able to help given my “ability” to walk a little. My husband and I tested a mobility scooter this last weekend and (while entertaining) I don’t think I could cope (emotionally/mentally) with having one so soon. I’m wondering if a wheelchair – especially one that “looked good” – would be better?
I’d welcome any help or thoughts here – and if anyone can recommend (or not recommend) a specific wheelchair or anything else, please do so! Thanks
im a bit like you cant walk very far and need to rest lots but dont wont to be ready to gointo a wheelchair , i have been using a stick but get just as tired so after many heartfelt talking with my husband i bought a walking frame with wheels a small bag for shopping and a seat to sit on when you get tired and find i can go much further with this and always have somewhere to sit if i need it. much cheaper than a wheel chair and i think if you wont to try and keep a bit mobile much better. mine is called a X fold rollator. dont wont to think about a wheelchair just yet so cant help with that but i am sure someone else can help you. Take care Katy
I have RRMS I’ve been dx for roughly 2 years and although I can walk, I also use a walking stick for balance. On my worse days I have to use 2. Would that help you at all?
I am on a waiting list at the moment for a wheelchair assessment as I think it would benefit me for the times I need to go further if that makes sense, To be honest if your medical team are recommending one I would listen and I’m sure you wouldn’t be turned down because “you can walk a little”.
Personnally I am pretty scared of the 1st time I go out in a chair but I was when I 1st went out with my stick and secretly I’m looking forward to being pushed along like lady muck! But there are several people on here who would say just because you need a chair sometimes it doesn’t mean you are stuck in it from the 1st time you sit down.
In the mean time would 2 sticks help you at all?
There are plenty of people on here who can give you better advice about chairs than can I can and I’m sure someone will be along to advice you further. But don’t struggle along any more than you have to.
My problem is that I hate to go slow! I can shamble along a bit on my pins but it’s not good enough - enter my beloved wheelchair. I know it sounds sad to love a wheelchair but I do. Getting an outdoor power has was the best thing - I fully understand that people are reluctant but honestly there is no need. I’d much rather glide everywhere in safety (and quickly!) than stumble and fall. The first step is to get a referral to wheelchair services (GP or MS nurse) and see what they have to offer. Jane
Sorry to hear about your diagnosis. I have problems walking and am reading your message after taking a shopmobility scooter round my local town this morning. Gives me the freedom to window shop, stop for a coffee and go places I can’t walk. Instead of parking the car and working out how far I can walk (and be able to get back to the car ) until my steps run out…
Haven’t thought about buying a wheelchair but know people on this site have them and hope they can give you advice.
I bought my first wheelchair seven years ago, knowing nothing about them, and selected it mainly on the colour! Older and wiser, and said wheelchair having been damaged I asked my gp to refer me for an nhs wheelchair, however I opted for the voucher scheme. The nhs paid £280 I think and I paid to top up to get a better and nicer looking one. I waited about 12 weeks for the voucher, but in the meantime we were given the list of approved stockists and had a look round to see what would be best. I have one which is comfortable, has a seat belt, and if I used it I wouldn’t have been tipped out by my husband recently. It is reasonably light, said husband finds it easy enough to put in the car boot, and if need be the wheels pop off easily. I’ve gone for one that self propels, even though I can’t propel very far, and not at all on surfaces that aren’t very smooth, but it can get in and out of loos etc. I have a mini mobility scooter too, it’s not as portable as a wheelchair, I’m not keen on it and it’s been gathering dust in the garage for over a year now. I found the staff in mobility shops very helpful. Good luck. When I first started using a wheelchair I wouldn’t go anywhere I might be recognised, but I am long over that now. I get around at home on crutches.
Hi there, Your MS nurse or doctor can refer you to wheelchair services. It won’t be the nicest looking chair you’ll get - but it’s a good training chair to allow you learn the basics of self propelling and general getting out and about with your husband, which in turn will enable you to enjoy doing things at a faster pace Another option is to go with two crutches. They will give you much more stability and you can get crutches that look stylish too. I use both options, when I’m out with my wife I use the chair as my walking is very limited, but for getting safely to the car or around my work office, I use crutches. I have just ordered a new RGK manual wheelchair after learning the ropes in my NHS chair. That way you’ll know if you want a manual or powered chair. Mike.
I am not as disabled as you as are but I cannot walk far and we live in a town built in a valley - yes hills are a serious problem for MSers. Not strong enough for a self propelling one.
Rollators - they are fantastic but you get what you pay for, my recommendation is a Topro
A self propelling wheelchair is very hard work. Hire one and you will see what I mean. A battery one is a good solution but do work out what you will want it for. Does it need to go in the car, will be only for shops and pavements, will I need it to get my daily food shopping, how much am I prepared to spend, is it easy to get on and off, Once you know what you want it for, the selection becomes much easier.
Talk to your MS Nurse, go to the local NS Therapy Centre, get impartial advice. I personally find mobility shops sell you what they think you will need, not always what you need. Remember thay are a business so sometimes not as impartial as you would like to believe.
Sorry if I sound a bit cynical, that’s life . Before you part with your cash do try it out and talk to people.
Hi Heathwitch I couldn’t have put it better myself, I’m in exactly the same position as you. The only way I’m going to be able to get out of the house now is in a wheelchair (have got a scooter but lost all confidence so need to regain some of that). Brought a lot of issues to mind. I’ve decided that i’ve just got to bite the bullet and accept the situation. It’s going to be easier on my OH as well as it takes me an age to go even a few feet. Good luck with whatever you decide. Keep us up to date how it’s going. Linda x
