Advice from wheelchair users

Rifi7

I’m soon to become fully wheelchair bound and not sure how to proceed and need some advice.  I have a Travelscoot which is a lightweight mobility scooter that can be folded up and is easy to put in cars.  It’s a three wheeler and when I originally got it was great to use but it has now become uncomfortable to sit on and can become unsteady should I hit an even surface.  I was thinking what are my options to travel when I become fully wheelchair bound? I can transfer from chair to chair at the moment and even if I was fully wheelchair bound I could still use my arms to transfer so I was thinking would I be better off with a adapted vehicle I can use myself or still get adapted vehicle that holds a wheelchair that friends and family can drive?  Just needed some advice from wheelchair users as this is all new to me and I’m confused?

janer1967

You need to think about how you could get yourself in the car and then put wheelchair in if like me all you can do is transfer from wheelchair then how would you get wheelchair in car and out again so maybe the best option is for car for someone else to drive unless you have someone to assist you 

Rifi7

Thank you janer1967. I didn’t think of that. So do you mind me asking how you get around?

janer1967

I use a manual wheelchair in the house I have a mobility scooter to go out local but my teenage son has to get it to the door for me to transfer on to. To go out I use taxi but can only go out with someone with me to help or if family take me out. I am going to try bus when I feel up to it but again will need someone with me. 

Misscleo

A friend drives her wheelchair into the car and drives while still in the chair.
A mobility show room should be willing to let you try what they have and give you advice.....I would hope

Rifi7

Janer1967 I’m in exactly the same situation as you but I don’t have children and I live alone. I have to rely on someone constantly and it’s frustrating at times. Sometimes I would just like to go out with nobody helping me. It’s not me being ungrateful for the help I get, because I’m not but it’s hard adapting. I will adapt I’m sure in time it’s just adjusting. How long have you been in wheelchair and how are you coping with it?

janer1967

Hi again I've been in wheelchair 2 years now was very hard to adjust as it was instant I had my leg amputated one day it was there the next gone. I'm not getting on too well with a prosthetic leg due to other issues. Without my son I would have been lost and he is my reason for not giving up. I was very independent had good career house but all that has been lost as well as my marriage.  But now I have adjusted moved to suitable housing and make the most of what we have but it's been hard journey. Keep strong and take any help offered. I would suggest getting a referral to a occupational health advisor for a needs assessment they can get you any equipment required. I think you can self refer on line 

Rifi7

Hi Jane1967. Sorry to hear about your situation but am happy that you have your son for support. It’s good to have a point of focus not to give up. Like you I was fiercely independent. I used to be an art curator and I loved my job. So are you and your husband separated? It’s very hard to get people that are not in our position to understand the frustrations we go through on a regular basis.  My family who live near me don’t visit and don’t understand how this situation affects me although I have told them on several occasions. I have an occupational therapist and I have had an assessment with work approved to be done in my flat, but I’m not sure that I want to continue living in my property. After the work gets done I still won’t be able access the local community as the curbs are high and pavements are uneven also to visit family or friends will be difficult as all their properties all have steps. I was thinking to move to my sister who lives in West Sussex as she has a house that I can go into and most roads to the local shops are disabled accessible and a big bonus is it’s near the beach which is also disabled accessible so I can go with my dog to beach. Also all sisters children who I adore live down there so I know I won’t feel as lonely as I feel here. 

I’m really sorry your journey has been tough but your lucky you have your son and your son has you. It’s like a helterskelter ride and we just hope we can learn something through our bad times and be grateful to come out of the other side. Thank you for your words!

Rifi7

MissCleo yes I think I have to consider a wheelchair that can be driven into a vehicle and get my carer insured to drive it. I need to weigh out my pro and cons. I’m so grateful for this forum as I’m getting great advice and guidance. Thank you!

janer1967

@Rifi7 yes I am now separated but that's a whole other story. I dont have family near either they live about 25 mile away they do visit and take me out but it isn't that often as they have busy lives. I tried to move near them when I became disabled but I was reliant on social housing and their council didnt give me any consideration so I had to stay in my own region or become homeless. 
It sounds like a good opportunity for you to move and will make your life easier and also you will be amongst family and not feel so alone I would snap up the chance if I was you. 
Good luck hope it all works out 


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Rifi7

Janer1967 I know social housing can’t be great but if it affects you why not try. Maybe you could contact your local mp or go to citizen advice to get help. I don’t know if the council will let me transfer to West Sussex but I will try my hardest to make it happen. If it doesn’t happen then I need to rethink things through again but life’s to short so I will do all I can.

janer1967

@Rifi7 I did contact my MP but other than him writing a letter to the council it was a total waste of time. I'm settled now and will stay until my son is of school leaving age as he has had enough disruption to deal with and he is settled and doing well in school. 
You must do all you can to make things work for you. 
I just had too much going in at the time to fight it and my main priority was not becoming homeless.

Rifi7

That’s understandable and your settled. Yes today I got the ball rolling and contact the council and estate agents about making the move. I spoke to my sister who lives in West Sussex, and all her family and they all want to move there. I also looked at some flats. It’s amazing how so many were disabled accessible and right on the sea front. To look for accommodation with disable accessible in London is like looking for a needle in a haystack. Plus the pavements and access to a the shops, beach and community are great for wheelchair users. I’m excited to where this can go.

pollyanna1052

Oh Rifl, I am excited for you. Moving to a seaside location has been a dream of mine for years...but it isn't going to happen now I am so dependent on others.

But if you can do it then do! It`ll be great for you and your dog. Good luck!

janer1967

@Rifi7 that's great news really hope it works out for you. Hope this is making you optimistic about the future. Keep me updated on your progress 

Rifi7

Hi Pollyanna. Thank you. I’m super excited about the move. I have thought about every aspect and it will be such a wonderful life. Getting around my area and neighbouring area in a wheelchair is a nightmare. There’s nothing to do round here for people in wheelchair and accessing shops is so difficult.  In West Sussex it’s more catered for wheelchair users and there’s lot for me to do.  I have alot of things to sort out but I have started the ball rolling but I have the support and the love of my family down in West Sussex and they want to help to get me there as soon as. 

Rifi7

Hi Janer1967
Yes I’m feeling so optimistic and I haven’t felt like that for such a long time. I see a happier future ahead. How are you doing?

janer1967

Hi rifi7 
That's great it's amazing how different you feel if you have something to look forward to. I'm doing well will be getting out tomorrow just local shops. Also going to start getting my bungalow decorated so I also have something to look forward to 

Rifi7

Janer1967
Yes it does make a huge difference when you have something to look forward to. I have had some of my furniture up for sale and after, what seems a lifetime, I have finally sold my sofa. I don’t know what possessed me to buy it in the first place because it is huge. I used to call it the beast because it takes up half my lounge. The day it sold was the day I made up my mind to move to West Sussex. I got a text from a buyer 4am in the morning. I thought it’s great to see I’m not the only one doesn’t sleep, then I thought this buyer is just a time waster, but within minutes the sofa was brought and the money was in my account. If that was a sign to move I don’t know what is. It’s good to hear your decorating. Sometimes a fresh lick of paint just brightens up everything. 

pollyanna1052

Hi Rifi, just look how your life has turned around...it`s amazing and wonderful to see a fellow wheelie with so much to look forward too. I`m really chuffed for you.

A friend of mine lives in the area you are moving too and she is a champion for disabled people. She started up a holiday group, which I do some moderating on, a charity called CYCALL, plus a website called South for All.

So things are going great!
Yaaay! xxx