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accepting I need to get a wheelchair and info and help needed with that

TudorTudor Member Posts: 7 Connected
edited May 2016 in Disabled people
Please excuse typos, tics mean I have difficultly typing I try to correct them but tat can often ake them worse, so apologies in advance, trid to corrct as many as I could without getting more syressed and making it worse.

so for a while now I have realised that I need to get a wheelchair. In fact I went to my old GP last year in May and asked to be referred to wheelchair services, sh was rude and horrible, she raised her voice, saying no and told me I had to learn to control my tics, I explained that I can't and she said I either control them or I stay at home. Well I changed to a different GP surgery straight away.

My motor tics as part of my tourette's can cause a lot of walking difficulties which include, my egs just stopping working as in I can only stand for a few seconds if holding onto something, I fall often when walking, my legs can tic whilst walking and cause me to look like I am drunk which means my walking is all over the place and I can hardly walk, certainly can't manage stairs, Ican end up walking on the sides of my feet which is extremely painful, my tics can cause me to suddenly run into the road, or into walls/fences etc, so all this can make walking, or standing for a long time very hard and/or very painful.

Thing is though after my previous GP experiece I won't go back to the new GP and ask about wheelchair services because I am so scared o fthe reaction and of more rejection. So I am thinking of buying one but keep putting it off. I just feel like getting a wheelchair is so final and I'm scared. I know there is nothing wrong with using a whelchair, I just feel I would lose things I love, like hiking and having hired a wheelchair when I went to London with my partner and my leg tics were suddenly really bad I was terrified being in it. I know that, that was an old, heavy one, but I was terrified going on any sort of slight incline, I panicked doing any slight curb or incline n my own andtipped backwards slightly once andit terrified me and athough I understandyouget used to it, I have amassive fear of falling, even staning on a chair can send me into a massive panic, where my legs shake and I ave a panic attack, so suddnly a new thing which could involve falling and I freak out. I'm also concerned I would never judge when I wouldneed it. Like I can go out and my legs be fine' but then whilst out my legs stop working and I'm all over the place and having to do stairs on my bum (a lift was out of use at tis one particular occassion) and thereisno warning. Just wondering if those who don't use a wheelchair full time, how do you detrmine when you ned to use it. do you say have rules like if you are going to a certain place or out for longer than x aount of hours you will se your chair.

also just wondering chair wise what I should go for, should I get one off the shelf for about £300-£400 but it isn't one that can be customised for me, but I've read reviews of a few and people say they are good. Or is it worth spending more, the £1000 mark and more, for a chair that can be customised wth certain things to suit me better.
I've emailed a place which sells a variety of chairs in Manchesterand asked if I can come into chat to someone, but I haven't emailed back sortng out a date, plus a friend warned me that they are sells people, even if theycan give advice. But I tought here would hopefully be a good place to ask.
thanks

Replies

  • Jean_OTJean_OT Member Posts: 528 Pioneering
    Hi Tutor, I know that this isn't what you want to hear but the staff at wheelchair services really are the best people to assess your wheelchair needs. Unlike, a wheelchair/mobility shop they won't be trying to sell you anything so they can be impartial about your needs. If you decide to go ahead and buy a wheelchair privately you might find this information of interest: http://www.independentliving.co.uk/manualwheelchair.pdf

    How much you are willing/able to spend will influence the weight of the wheelchair chair and obviously heavier wheelchairs tend to be harder to push and harder to lift in/out of cars etc Made to measure/specialist wheelchairs might be more comfortable. It really does depend on how much you are intending to use the wheelchair, occasional use probably doesn't warrant spending vast sums on a custom wheelchair.

    Feeling confident using a wheelchair is partly a matter of practice but there are also specific skills that you can be taught to make using a wheelchair easier and safer. There are a few wheelchair skills training courses available, such as: http://www.freedomwheelchairskills.co.uk/

    The concern about using a wheelchair a lot of the time is that you would be in danger of losing some of the walking skills that you currently have. Also, as you point out, it would also limit some of the activities you currently enjoy, like hiking, that are probably beneficial to your well-being in other ways. It might be that there is another solution to the mobility difficulties you are experiencing.....For example, maybe a rollator would provide enough support to make you feel more confident that you wouldn't fall in the event that you experienced the motor tics. It is possible to get all-terrain rollators that can be used when hiking etc: http://www.balogh.com/trionic.htm

    There are a lot of different factors to weigh-up and so it would be go to talk the options over with a suitable professional. If you don't want to ask your new GP for a referral to the wheelchair service perhaps you could ask to be referred to a physiotherapist or occupational therapist so that you can receive advice on what the options are for addressing your mobility concerns.

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • PammiePammie Member Posts: 12 Listener
    Contact a firm called Mobility Choices - they have a website where you can browse their products. They will come out to visit you and if you decide to go ahead and purchase a chair, they will give you excellent advice and won't try to push anything inappropriate on you. I purchased a lightweight chair a few weeks ago and it has revolutionised my life. It was custom built through Mobility Choices, who also arranged a low cost finance option for me. I was really scared about using one, so I know how you feel, but I'm so glad I made the decision as life is so much easier now and I am no longer a prisoner when we go out in the car, as I have been up to now because of the deterioration in my condition. It's also worth another try with your GP because you may be able to get an NHS voucher worth up to £250 towards the cost of a privately funded chair - but you would need the co-operation of your GP for this.
  • You can contact social services for your area and ask to have an appointment in your home with an Occupational Therapist (OT) and a social worker to assess your needs. AN OT is not just concerned with people who work. The OT and or social worker might agree to write a letter to your GP recommending a referral to wheelchair services.

    As to seeing your GP then all GPs should treat you with respect and if they do not then you should lodge a formal complaint about them. Of course they have the right to disagree with you.

    I suggest you prepare what you are going to say to the GP and maybe write it down if you can and give them a copy of your key points for why you feel you should have a referral.

    If assessed for a wheelchair or walking aid then usually a wheelchair services O.T. would assess you with a wheelchair engineer and they would measure you for a machine to fit you but also take you out not he streets to give you advice with coping with the streetscape and seeing how much control you have over a machine.

    You could also make disabled friends and ask them to try out their relaters / wheelchairs etc.

    Be aware there are lots of different types. If you have severe tics an electrically powered chair (known as a power chair or e.g. EPIOC Electrically Powered indoor & Outdoor Chair) might not be safe for you or other people.

    You can perhaps go to a hospital in your area, such as in the Midlands the Central Rehabilitation Unit in Leamington Spa and visit their shop and try out gadgets such as a rollator if they have them in stock. But only go after phoning to find out if the shop is still there and what time it opens and what they have in stock.

    I suggest also arranging visits to shops and suppliers who sometimes have out of town warehouses and go with the attitude that you are just browsing so you have time to think about it before making a decision. Then check on line for comparisons for best prices and quality and look at reviews of products.

    Some people find tripod sticks useful although these might not suit your needs.

    Good luck finding the best solutions.
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