Forum

Getting out and about

Hi everyone

Hope you all had a good Christmas and have a great New Year.

For those of you with mobility issues how do you get about? I went to meet a friend in London today but could go no further than than the station so we had lunch there. At the moment I use braces and a stick but I’m getting so very slow and the effort it takes to walk with these heavy legs is incredible. I really want to visit galleries such as the National Portrait, Saatchi, etc but am not sure I can get there and when I do how will I get round?

I posted last last week about my flipping dipping knees which buckle when I stand still so even standing doesn’t give much rest now. I saw a neuro who thinks this is a relapse and will pass- she prescribed Methylprednisolone - hopefully she is right but the last time I took steroids it made no difference. She wants me to keep moving and be as mobile as possible which I do try to be but it’s getting so hard. I’m seeing my physio next week so hopefully she can advise too. Some of you mentioned using a chair. If it gave me my life back I wouldn’t hesitate but I got the impression from the neuro that this wasn’t a good idea- we didn’t actually talk about chairs but I just felt this was her view, I’m probably being unfair and it’s probably me feeling it’s not a good idea.

I hate this disease!

Fishgoose X

Hi Fishgoose - really sorry to hear about your mobility problems. The major galleries often have wheelchairs you can use during your visit, and also folding stools that you can carry around and pop up when needed - I often use these. I think the best idea is to check their websites, and then phone them up to check/reserve one - I’ve always had a helpful response.

Getting about London itself - I’ve discovered you can use the TFL website https://tfl.gov.uk/ to find a route without steps - or with fewer steps.

Good luck!

Bec

x

1 Like

Fantastic! I found the tube map so now I’ll check the galleries thank you so much! X

That’s a great idea, to use wheelies provided by public places. I did this before I knew it was time to get my own. Supermarkets and lots of places also lend them to customers.

Enjoy your visit.

Pollx

Poll what made you decide to have a wheelchair in the end? Or did the choice get made for you? I hope you don’t mind me asking X

Fishgoose,

I thought long and hard about buying a mobility scooter, but it has been a liberating experience.

I have no experience of getting about in London using a scooter, only lovely Norwich. All the galleries there are geared up for wheelchair/scooter users, as you would expect. The only small complaint is that some of the exhibits were a little high and caused a slight crick in my neck. Otherwise I have had lovely times at the galleries.

At the risk of sounding presumptuous, why put yourself through a lot of discomfort for no reason when you could whizz about on a scooter and feel less fatigued? There are always opportunities at home for movement and exercise and you can recover in comfort.

To use your phrase, the scooter has given me my life back.

Alun

1 Like

I know you’re right Alun. I had no difficulty taking the plunge to use a stick which has helped so much but a wheelchair/scooter has me being hesitant and I’m not sure why. This disease has taken so much so quickly! Last September I didn’t really have any clue what ms was and was able to walk and run without a second thought and by May this year I was using a stick. I’ve accepted my increasing disability but I confess I do say ‘Can you just stop there?’ But ms ignores me lol! I also wonder how others manage with a wheelchair. At the moment I put my stick in the car and use it at my destination - a wheelchair won’t be so easy but if that’s my future I know we will find ways to manage as so many others on here have done. My friend has a scooter I can have so maybe I’ll try it out, I’m seeing her tomorrow. I think I’m worried about being a burden to everyone. X

1 Like

Yes, the speed of deterioration has been alarming for me too! Within the space of about 10 months my walking distance has reduced from about a mile (with stops) to about 50 yards. I have been using a stick for about two years but my balance is shocking.

I wish it would stop but I think MS has other plans for me. You sound as if you are keeping your brain active, which I think is vital. I read a lot and do a crossword everyday and I still go to the theatre and concerts. I just hope that I can maintain my powers of concentration.

Best of luck with the scooter. I have a 4mph one which dismantles easily into five parts which fit into a car boot. It only takes about two minutes to assemble or take apart.

Alun

Hi Fishgoose

God it’s so hard. Especially when you’re younger, I remember starting to use a stick. I hated it. I hated using it. Strangely I had less trouble with a crutch. But the dreaded wheelchair!!! At first, we bought a cheap old second hand one and I used it a couple of times on holiday, to get around big exhibitions etc. But, I was embarrassed, didn’t want to use it at home. It was a big thing to use one when we visited friends. I also used an electric scooter in zoos and places (Monkey World for one).

It was only when I had a major serious relapse, the one that stole my walking ability, that I had no choice but to accept that I am a wheelchair user, and to a greater or lesser extent, will always be now. My friends still see me as me. It’s only in my head that I’m different.

Four years later, I still don’t want to believe it’s forever, but it is. Except when I’m asleep. Then I can walk, dance, run, do everything I want to do.

People say that their wheelchair / scooter has given them a new lease of life. They can now do so much that was denied them without a chair. They are right. We can walk on the seafront, visit places that would be impossible without a chair now that I can’t walk. But, being completely honest, I’d still be reluctant to start using one unless I had to.

In your place, I’d be using a chair where you can borrow one for the gallery / exhibition / etc. Buy one (or get one from your local wheelchair services) to use when you need to. Join your local Shopmobility so you can borrow a chair for shopping etc. Keep walking as much as you can for as long as you can.

But it’s a very personal decision as to what you’re comfortable with. I wish you luck in that decision making.

Sue

4 Likes

Oh I’m sorry to hear that it has been so fast for you Alun. I can walk 50m with braces in a slow wobbly way lol and quite a bit further with my stick to help me balance and rest. It’s the dippy knees making the rest times so difficult now as I stand there bobbing up and down lol!

What is the make of your scooter? I’m going to try my friend’s one tomorrow but have realised another problem which is storing it. If it could come apart like yours maybe it would fit in my porch?

I will be taking ill health retirement this year as can no longer work. My concentration is abysmal I haven’t read a book for months which is just not me at all. My plan is to focus on art. I love drawing so now is the time to hone my skills, not as easy as before due to the concentration issue and to shaky hands that like to drop things but what the hey I can still do it. My activity of choice right now is watching the entire 5 series of Game of Thrones with subtitles (I’m deaf) on Sky. It’s great as I don’t have time to forget what’s happened and I can rewind and watch the parts where my concentration was lost (which is often). I like crosswords too so will get some to do.

Thank you x

Thank you Sue. It helps to hear the stories of others. Sometimes I’m not sure if I’m fighting ms or me! I treasure every step I take. The mobility scooter my friend has was her father’s he lost a leg after an operation went wrong and was completely devastated. I saw him the day before his op and he had just been for a walk, after it all went wrong he said if he had only known it would be the last time. From that day I’ve treasured every step not knowing that ms was waiting for me and for that I’m grateful. So yes I will keep walking for as long as possible and perhaps with a scooter or a chair I can do more X

1 Like

Fishgoose,

what an interesting thread. It amazes me how the goal posts shift over time (short or long) As an avid walker with my wife, I thought my life was effectively over when I needed a stick (but I got over it) then the thought of a rollator or scooter filled me full of terror,(but I got over it) I have shifted from acceptance to deep joy (with occasional bouts of anger and frustration)

My off road scooter gave me back a huge pleasure in walking in the countryside and my folding chair means that I can be with my wife and keep up with her.

With change come benefits and problems, my job is to try to adapt and therefore maximise the good stuff.

Good luck with your journeys , there are usually ways around the crappy stuff.

all the best Mick

2 Likes

You can do the full tour of the Houses of Parliament in a wheelchair - they had a great attitude there!

I have a luggie scooter that folds up.really easily and fits into a car boot, i love mine.

J x

Thank you for this thought-provoking comment - it did make me smile. Good New Year resolution material, that - remembering to ask oneself how much of any given trouble is MS itself and how much is self-generated!

Alison

2 Likes

Thank you every one such great comments, advice and support here. I don’t feel quite so afraid now not that ms cares how we feel lol!

X

2 Likes

Fishgoose,

I have the absurdly named Pride Go-Go Elite scooter. It could fit into a porch as the base could be stored upright as long as you removed the seat and fold down the steering column. It is best to take the battery indoors rather than leave it in a porch. There are faster and more comfortable scooters but I bought this for the versatility of storage and transport.

I am glad that you are still able to walk. I feel that I should do more and I will investigate the use of a rollator with my MS nurse and physiotherapist. I would like to walk around town and back; I live in a small market town so there are plenty of opportunities for a rest en route. I no longer feel confident with a stick because of my drop foot and, of course, I have fallen a number of times.

I am sorry that you cannot concentrate to read but the art sounds very therapeutic.

Does anyone out there have any views on rollators? I find that I can walk a lot better pushing my grandson in his pushchair which has made me think that a rollator may be the answer.

Yes, this is an interesting thread.

Alun

1 Like

“I saw a neuro who thinks this is a relapse and will pass- she prescribed Methylprednisolone - hopefully she is right but the last time I took steroids it made no difference. She wants me to keep moving and be as mobile as possible which I do try to be but it’s getting so hard”

I think your neuro wants you to concentrate on trying to keep as mobile as possible till it becomes too much for you. I think it may be stages which people accept with ms, your neuro may think you still have the fight and determination in you to be mobile. Only when this becomes too difficult, or your resolve weakens, that you start using a wheelchair. But, of course, you can use a wheelchair as an aid.

This is my understanding from talking to my neuro. My mobility is declining all the time due to having spms, and my world is getting a whole lot smaller, but I am still able to work full time…for the moment. I use a crutch outside my home but in work I tend to “furniture walk” and bounce off the walls in the corridor. I’m dreading the day when I have to use a wheelchair.

I’ve got a rollator too which I used (it was good) when my foot drop was very bad but braces have helped immensely. I find supermarket trollies the best but we’d look even more odd walking around town with those lol! I’m going to look into both your Pride Go-Go Elite and J’s Luggi.

X

I can’t help with advice on rollators, but the ingenious FES is the best thing I have found help dropped foot. www.odstockmedical.com

1 Like