@KoffeeLover

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KoffeeLover

Wheelchairs

At the moment my symptoms are worsening every day, to the point where I am mainly staying upright through shear bloody mindedness. I'm concerned that someday soon I will start to have days where bloody mindedness isn't enough. Soooo - does anyone know how I could get a self propelling wheelchair quickly? I have a son with physical disabilities, so I'm familiar with the wheelchair services ( 2 year waiting list, no chair if you can walk even a little!). I'm currently in limbo-land, awaiting results of MRI before I can be transferred to the MS nurse and consider treatment. No idea how long it takes. GP is chasing, she's concerned about the apparent aggressiveness of my symptoms!!

Stumbler

@Stumbler

@koffeelover , it might be worthwhile making a direct approach to your local MS Nurse and see what they can do for you. You can find their details here, https://www.mstrust.org.uk/understanding-ms/who-can-help/map-ms-services . If you're familiar with wheelchair Services, you'll know that wheelchairs come in different sizes, to ensure a comfortable ride. It would be useful to get Wheelchair Services round to measure you up. Then you can look to source your own wheelchair. Dependant on you financial circumstances, you can buy or hire. Google is a great help here. I admire your bloody-mindedness, but do not "Lock horns"with your MS as there will be only one winner. MS needs to be managed, which means that we will sometimes have to admit defeat in some fights, as long as we win the war. Work with your MS, not against it. :wink:

mammamoose

@mammamoose

I bought a folding wheelchair very cheaply off ebay. We just put it in the car when we go out so if I need it it's always there. Sometimes I think you have to make a choice like do I go walking around Tesco for 45 mins and spend the next day or two feeling knackered laying on the sofa or do I use the wheelchair and have the energy to do something else more pleasant the next day.

KoffeeLover

@KoffeeLover

Yes @mammamoose, this is exactly my feeling. And exactly the choice I help my 14 year old to make each day!!

Vicy

@Vicy

I discovered on 1st using a wheelchair that I didn't hate shopping with my teenage children. I just hated how tired & washed out walking, balancing & managing a budget at the same time made me feel. I've been pretty good for a few years now, but the wheelchair lives downstairs for when I do need it . I usually say if you can measure it in metres I can probably walk it, as long as no-one shouts FIRE, or I'd be killed in the rush. If you have to estimate how far it is in miles, then I'm taking the wheelchair, even if I push it for a while. I've no idea how to speed things up, but how about something like streetwise or social media? The down side is you'd have to be honest about how bad things were to people you may not necessarily want to tell, but someone might have one tucked away somewhere. Several people have borrowed mine over the years, for visiting grandparents & my neighbour when she broke her leg! Good luck, I'll pray for you if you're comfortable about that.

jman

@jman

@reddivine might be able to add to the thread. Basically it comes down to need and cost. Research and trying it out WILL save you time, grants/crowdfunding can help with costs but most grants require similar multiple quotes and paperwork.

Jemma

@Jemma

Try the Red Cross they have a wheelchair loan service, its not going to be a high end ultra light chair but it will be something to get you started until you can either source your own or get one from wheelchair services from the NHS http://www.redcross.org.uk/What-we-do/Health-and-social-care/Independent-living/Mobility-aids Jemma

KoffeeLover

@KoffeeLover

Thanks @jemma! I'm very familiar with our local NHS wheelchair services - if a person can take 5 steps inside, they are not eligible for a wheelchair (!). Even my 14 year old's chair had to be bought privately!!

Jemma

@Jemma

@Koffeelover .. you're very welcome :-) i hope you can get something arranged through the Red Cross, my local NHS wheelchair services were very slow to get me an assessment appointment so i went ahead and bought my own chair privately (TiLite AeroZ) but i have had my assessment now and whilst i did'nt like the chair they offered me i have received a voucher to the same value as the chair so i will buy another privately and use the voucher against the price of the new one (Quickie Helium) Jemma x

KoffeeLover

@KoffeeLover

@jemma I'm a big fan of quickie!!!!! Both of 14s chairs are quickie

jman

@jman

When I needed a chair the Red Cross had a waiting list of over 6 months, ended up renting. RD's chair is a Karma manual folding with a Benoit Lightdrive (funded via grants from MS charities, and family and friends). Its advantage is that it goes in the back of most taxis easily, disadvantage is it doesn't handle heavy terrain, or deal well with snow/rain that well and does need maintenance http://www.benoitsystemes.com/minotor2.html A word of warning on insurance.. READ THE FINE PRINT CAREFULLY. most insurers will recover ONLY for short distances from your home , or where your staying.(20 to 50 miles). IF, you travel without a car as we do, you could end up stranded with the equivalent of an expensive piece of metal and your own good self.