Getting a mobility scooter...Where do I start?

Dee78

Hello fellow posters, 
Be so grateful for your advice. 
I've been thinking for years to get a mobility scooter, but feel very stuck!!
`I think it's a combination of the mental barrier of using one, and also practicalities. 

To explain: I have Ehlers Danlos Syndrome ( unstable joints) and also neuropathy in my feet which has progressed.  So while I can walk, and try to maintain my mobility as much as possible, every step hurts and lots of standing is very difficult. I use hiking sticks while out and about, but while going from room to room: eg at work or home I don't use any walking aids ( other than perching stools) and you wouldn't know to look at me I am struggling!

When speaking to my pain specialist a few years ago, I told him there are so many things I can't do any more, as the pain just builds and builds up and then I find myself mid journey in extreme pain with my feet 'on fire' or I have a big flare up the next day! Eg, simple things like to do a shopping list of errands in the city centre, or a day trip to London.

But when the specialist referred me to physio to discuss scooters, they were dead set against it and thought it would immobilise me. Plus I am very embarrassed to say this, but  I have my own predjudices against myself, like 'I don't look disabled enough!' Or worried people will judge me, as my pain is invisible. Or worried that people will see me differently, a big step for me. 

Sorry, I know these are all really silly thoughts, and some of us totally rely on scooters, but I just feel so stuck and I don't know how to get help!  I have long since been discharged from pain specialist and physio, so not sure where to turn.

Plus of course, there's the practical side...big expense of scooters. I have savings, but it would certainly take a big chunk of them ( I am very petite, so I'd expect I'd need to get a custom made one, or those that do small ones like Travel scoot)  I have higher daily living PIP but lower rate mobility PIP so don't qualify for scooters.

Many thanks for your suggestions

Dee78

PS: To add to the matter, I am not in permanent housing, nor do I drive a car.. Currently living with mum mum since lockdown but looking to move if ever I can afford it and find somewhere suitable!  So a scooter would potentially have to fit in a rented house/houseshare. I don't think any council will build me a shed or resurface a gravel drive to make it scooter accessible, if I am in temporary accommodation! But anyway, that's the practical side. First barrier is the emotional one. 

janer1967

A scooter can give a great amount of independence especially in your situation 

They are ideal for those who can walk a little but need the scooter for longer journeys like round town 

A lot of shops etc ard too small to use a scooter inside so it's ideal if you can get off and enter the shop on foot 

I understand the emotional side buf personally it gave me a whole new opportunity of independence for a while till I lost vision so now can't use it 

Go and visit a mobility shop and try some out sed what suits you could then possibly get second hand one so your not paying lots till you decide you will get use out of it 

Dee78

Hi , Thanks Jane
Really appreciate your advice from your own previous experience! Yes, if I can overcome the emotional stuff, a scooter for certain scenarios would give me so much more freedom such as day trips, and less of my brain taken up by pain when out doing the less fun things like shopping! 

Good idea re mobility shop to try out scooters. Or second hand.
Does anyone know somewhere that rents scooters out in Oxfordshire? That would be ideal!
Because I think I’d only know after a few weeks if they are helpful, and if my arms can manage the ‘bicycle’ posture. 

Thanks 😊 

janer1967

I don't know specifically for your area bit there will be.rental places as people often need them on temp basis so I would suggest a Google search 

They are very easy to handle and control so don't worry about that my son when he was 10 could use mine 

Good idea to rent one.

If you want one for day trips make sure it will go into a car and it can be lifted as they van be quite heavy 

Kennym2022

I no its easy to say this but don't pay attention to what anyone else thinks its none of their business.  And if your in that much pain then I say go for the scooter if you think it will benefit you then you should get it. I think it outweighs being in constant paint when out and aboutg and it will help you get around

Dee78

Thank you Jane and Kenny!
Really helpful advice.
Yes, you are right just not to pay attention to what others think.
For certain situations it would make a huge difference! After all, other people save energy by cycling around, and I could do so with a scooter! It would be great to do errands without my feet feeling like I am walking on hotter and hotter coals as I go from shop to shop! If I had a scooter I’d actually have some brain for shopping! 

It’s just making the first step.. I even thought to do a day trip to an out of town or local  shopping centre and try out their shop mobility scooters if I am feeling brave..

Kennym2022

For any long journeys use the Scooter and for shorter ones try to walk as you need to deffinately keep active for a bit 

Alex_Alumni

That's great advice @Kennym2022 keeping active is also really important for our bodies, as our mobility can deteriorate very quickly. 

It's certainly something I noticed which impacted me during the lockdowns, when I was walking a lot less, it became more tiring and painful when things started up again.

We'd love to hear about a test run @Dee78 by all means go for it

thara9643

You can get a free mobility scooter on the Mot-ability scheme. Take a very close and careful look at the helpful details on their website, or call them or email to find out more. Make some brief summary notes. Also try to do some sort of exercise as this is crucial. I try to go for a nice walk in a local park with Milo once a day in order to help me to keep my body healthy. 

Aardvark

I do understand the 'i dont look disabled enough'  but stop for a moment and try and decide what you think 'disabled' looks like?

Do you judge people as they shouldnt be on a mobility scooter when you see them? nope i didnt think so.

It is really hard, i hated my scooter at first i really did but it gave me so much freedom and made me more able.  I am now a wheelchair user .. even better as i have a hand free when wheeling.. dog lead, holding hands, looking at things in shops, ice cream... oh for me its much more freeing... 

If you use buses and public transport ake sure the scooter you choose is allowed to travel... they ahve some size restrictions.. less so i have found with wheelchairs.

They are expensive .. i would say start with a used scooter (be prepared to change the batteries) but you can save a lot of money.. ebay and local selling pages are a good start. 

Make sure its one you can lift or whoever is accompanying you... some of the boot scooters come apart.. think pride go sttyle.. but equally some of the wheelchairs do too and i found easier to store in house and could use inside.. gochair / shoprider vienna.  

They do take a bot of getting used to.. I am 13 years in and still have moments when i just struggle being a wheelie but most of the time its freedom an allows me to do things i couldn't otherwise. I think we judge ourselves more harshly than others do often, and well the people who have an issue arent the people in my eyes whose opinion counts.