Can someone give me advice please mobility issues?
My legs are getting increasingly painful and the other day I was in excruciating pain just doing a few steps and I said to myself I need a wheelchair
To those of you who use one when did you make the decision to have one?
hiya
gosh-i imagine thats a very individual thing to answer!
for me it was a decision that was taken out of my hands-literally!
a huge relapse from which i have never recovered-one day i was driving, volunteering, washing/dressing myself and within 48 hrs needing washed dressed and fed!
dont get me wrong-i aint complaining, u adjust to whatever life throws at you. or as my wee bruv told me-play with the hand that u r dealt and if its crap then cheat! (carers and my powerchair are a couple of my cheats!)
i often read on here of exactly ur dilema and i have no idea on what to suggest! perhaps just follow ur gut? if a chair will make life easier for you then do it, why punish yourself meantime?
take care and you will do the right thng for u i am sure.
ellie
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Sometimes it feels like you need permission to move on to the next stage of disability equipment. I remember going from a stick to a crutch and wondering who to ask, how to go about making a change and wondering if people would think I was giving up.
Personally, I had a wheelchair that I bought second hand for occasional times, usually on holiday when we went somewhere there was a lot of walking. This was about 7 years ago. I had that for a couple of years, mostly managing with 1) a stick, 2) a crutch, 3) 2 crutches as time wore on.
Then I went to wheelchair services and was given my first self propelling chair. I still only used it to go out and managed with crutches at home until, wallop, a major relapse hit me. Within 3 days I couldnāt move any part of my body below the chest. From that time on, Iāve used a wheelchair full time. I had a degree of remission, but Iāve not been properly able to walk since then, which was four and a half years ago. So at that point I had no choice.
I can now walk a few feet using both an FES and a walker, but thatās only a few times a day and some days itās not possible at all (like today!)
In your position, you should think about getting a referral to your local wheelchair services, from your GP, neurologist or maybe physio. It doesnāt matter if you need it full time or only part time. And itās not about giving up on walking. Sometimes itās better to use a chair at times and save your energy for walking when you need to.
Sue
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Hi, I used a wheelchair part time, when any more than about 20 mins or less walking was involved . I suffered greatly with foot drop and falls were daily and very, very frightening. Some were quite spectacular and wouldāve earned an Oscar, if they were in a film.
Within maybe, 3 years of problems beginning, I decided to go full time wheelie-ing. But I could stand for transfers and learned to shuffle walk backwards, before the legs gave out completely.
I see my chair as my best friend, my legs, my ticket to the world. Without it I would be bed and house bound.
Love Poll xx
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Go for it Rebecca. My diagnosis happened so fast, it took me a while to accept I needed a crutch to get about. Three months later I realised wheels might have to be an option. I ust couldnāt manage to complete any small intended ājourneyā, as in I was walking from car to shop but then becoming stuck once in there!
People on here were full of great advice as to what to consider etc. Once I got over the initial sense of self-consiouness, I donāt think twice about it. I need it. Simple as that. 
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Hi Rebecca,
Just back from my first trip away on a train, on my own, with my wheelchair, so I had to reply to you.
I have had MS for over 25 years. Walking getting worse and worse, very sore stiff legs. I use a stick and shopmobility scooters then bought myself a second hand scooter two years ago. I started using aids when I felt like it and when I decided I needed them. It will have to be your decision when youāre ready for help.
Last year I went with my family to Amsterdam - I borrowed a transit wheelchair to get me around,huge success. However I could only go where people pushed me.
On returning home decided to contact my MS nurse and ask for referral to wheelchair services at the hospital. Managed to get a custom made self propelling chair. Really pleased with it. Easy to take apart/ put together. Went to visit my daughters this weekend. Virgin trains gave fantastic assistance. Meant I could be pushed about and at Bletchley Park I could wheel myself around the displays.
If youāre thinking of getting a chair, why donāt you contact your local Red Cross . Think they lend them out for up to 6 weeks. Would give you an idea if if helps you be more independent.
Good luck.
Jen x
,
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Jen, that is an an amazing and inspiring storyā¦clever youā¦wonderful how you went alone and sorted yourself out with chairs and scooters. Youll defo give others confidence to try it for themselves. It does take a lot of guts to go for it. I think youre marvelous!
I stayed independent as long as poss and even used to get ramps out of my estate car and push my scooter up and down them by myself!!! If I got a bit stuck, passers by were always eager to help, bless `em!
pollx
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Great to read that Jen. Very uplifting. Is your chair a Quickie? Iāve been measured up for mine and am in a waiting list for one. Glad you had a good time.
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We got a wheelchair when I got fed up (after about three weeks) with pushing my wife around the house on an office chair.
Probably not a typical case as she went from being capable of walking about half a mile (with two sticks) to not being able to even get out of a chair in a matter of two days after getting Shingles.
Have a Shingles jab if you can get one from your doctor - theyāre a bit specific on the ages you can get them on the NHS but may make a special case for someone with MS, they certainly ought to having seen the effect it has had on my wife.
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Wheelchair updateā¦
Had to go to the hospital for an xray today. Decided to take my chair, Iām getting brave now! . Got it out the car, put it together.
Wheeled myself into the hospital including lifts and into the xray room. Radiologist is an acquaintance who I havenāt seen for a while was looking at my notes when I entered. The nurse helped me onto the bed.
Radiologist asked me how my MS was, had to tell him Iām using a chair he hadnāt noticed me coming inā¦ Made me laugh!
Nurse asked a porter to take me back to my car. Dismantled my chair, back into the boot.
Another successful adventure.
Jen xx
PS bought myself a nice flowery poncho that will cover me and the chair. Had to wear it at the weekend as it was raining. My daughters were falling about laughing as I looked like a bat Pokemon!!!
Hehehe! The first time I wore a rain poncho, navy blue<ā¦my sister roared with laughter at me! She said i looked like one of those people in the disabled catalogues. Well i am like them, so what was so funny!
Anyway, since then I bought a pretty pink flowery one, like your`s I guess.
But the navy one keeps me drier!
Wheelies in ponchos unite!!!
Pollxx
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Great stuff Jen. Youāre amazing! Now do tell me, is your chair a Quickie?!
My lovely hubby tells me I look like a matquee ( sp ? ) in Poncho without a wheelchair so wonder what the description will be when I need to wear one sans wheelie in the winter !
Do tell me where to find flowery poncho plsā¦might as well be a pretty marquee !
As to when to get a wheelchair, all I can say is when you feel the need for one. OT should be able to help with a referral but I think the difference in areas can mean some get power chair others only offered the type someone else needs to push.
Ell
Think I got the flowery rain poncho at good old Primarkā¦about 8 squid!
pollx
Iāve got a bright red one. It looks stupid. I think Iāve worn it once. And Iāve had it for about 3 years. Whenever possible, I stay in when itās raining. Which of course it doesnāt do often, as apparently āwe are protected from bad weather by the South Downsā, as my lovely OH tells me at least once a week! Not that heās at all boring, or repeats himself often (!)