When is it time for a wheelchair?: I've been... - Ataxia UK

Ataxia UK
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When is it time for a wheelchair?

SamGH
SamGH

I've been thinking about this one a lot recently. I've slowed down in recent years and they have started using assistance at airports. I'm missing the bus more often than not because I don't get there in time. Yesterday I went for a walk unassisted for the first time in ages it took 50 minutes to walk just less than a kilometre. I just don't know when the right time will be

20 Replies
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Hi Sam. I have every sympathy as I am in same boat. My local shop is approx 400 yards and takes me about 20 minutes to get there and same back. I have to rest when I get there, sometimes on the journey, and using crutches too...:( Sometimes I start out but turn around if I dont think I will get there and back.

Personally, I will only give in when I can no longer manage it...I am a stubborn SOB..lol...but will not let it beat me.

Be positive, I do exercises daily (those that I can) to try and help. Whether these help I dont know but get great satisfaction when I finish, and it can take all day to finish (that is when I do..:O)

I live alone and so have had to adapt to my limitations. You will learn your own limitations but NEVER be afraid, or worried, to ask for help. Airports are a pain coz of distances. I am also lucky in that a bus stop is only about 100 yards from my home.

GOOD LUCK

Steve

SamGH
SamGH
in reply to Capricorn9157

Cheers. I too have a bus stop nr by. A cane and sometimes a wife as well. Still it takes ages getting around

Capricorn9157
Capricorn9157
in reply to SamGH

Hi Sam. I agree it does take ages to get going but as I live alone the only thing I need to worry about are appointments. The rest of my days I do what I can and when I can. Shopping is ordered online (everything from food to clothes to furniture) and delivered and I have a lady who cleans for me (takes me twice as long to clean one room as it does for her to do whole bungalow).

GOOD LUCK

Steve

Have you thought about a walker or rollator. There are lots of new light weight ones about now, and would help with your mobility

SamGH
SamGH
in reply to crisal

Not sure what they are really. I'd rather propel myself than be pushed

crisal
crisal
in reply to SamGH

Look up mobility aids There are some really snazzy ones about. If you are using sticks or crutches a walker is the next best thing. I take mine to the gym and to Pilates. Mine also has a seat so I can have a rest

SamGH
SamGH
in reply to crisal

I looked them up last night and you're right there are some cool looking ones but some Dad looking ones as well

My daughter made up her mind that she would never sit on a wheelchair. Her determination was stronger than her problem and due to this she is very slowly getting better healthwise She will never be able to walk without her k walker but would never use the wheelchair. Good luck

As you can still walk try a walker (American rollator) Wheeled walkers come in different heights, 4 or 3 wheels, seats, baskets and brakes. Bought both mine pre-owned from daughter and AGEUK warehouse. Apart from sitting on the seat, use the seat with tray to carry food. Tray is actually a washing up bowl. High sided and easy to wash and replace.Whilst still walking alter your house and environs ready for when you use wheeled walker. Have ramp avoiding outside steps, stair lift and vinyl flooring downstairs is easy to wheel over. Wet room and seated shower are best alterations.

All free via OT referral.

Having a visual aid (walker) tells people somethings not right.

5 door and leatherette seats make carrying walker in car possible.

SamGH
SamGH
in reply to FFNick

Thanks for the advice I'll get onto this I've already got a great ot who's fitting some rails for me and I've got a wet room with seat thankfully we've got wood flooring as well cheers

Hi I’m 25 and I have been using a walker for over a year now and it really helps. Before that I used my sister for support. I too have rails fitted into my home and I hope I never will have to use a wheelchair but I just try and stay positive!

How did you find when you first started using?

I guess it's when you realise that there's things you can no longer do. For example I use mine to go for walks around the local lake with friends and family, to wander around town etc etc.

I walk always with a stick when I leave the house and sometimes inside too. Before the chair I would only go out to eat at friends or to go shopping in the supermarket where I always push the trolley. Also in the chair I can see things around me which I can't do when walking as it takes too much concentration. I also can keep up with friends and family.

My chair is a kuschall efix with an electric controller so that I can walk while pushing it too. It's basically a lightweight, foldable chair so it can go in the car with a battery and joystick. Then it has an additional electric controller on the handles (handlebars) .

The chair has reopened many possilities for me that I previously had stopped. I love visiting new towns and places. I love my chair - it really has changed my life.

However, it's really important to keep walking. So I walk whenever the distance is short enough and walking with the chair is really good too.

I don't see it as giving up at all. In fact it has helped me increase my walking distance as I know that when I'm tired I can get in it.

good luck xxx

Thanks for this

Hi Sam

I started using a wheelchair at 18 so that I could be more independent at college. I've got to say that it was a relief to no longer have to worry about wobbling or falling.

Sticks and walkers never worked for me but it is definitely worth trying!

Best of luck,

Lydia

My 19 year old daughter was diagnosed with ataxia and CFD when she was 14 years we passed through very difficult times but one thing she did was deciding not to use a wheelchair not even when her consultant advised her about this. Her determination helped her overcome a lot of problems we thought she was going to experience.

After 3 years in and out of hospital she started going to school again and she is considered as role model for the rest of the class. Her determination to succeed in life was noticed by her teachers and now they all advocate for her when she is faced with new problems. I am fully aware that not everybody has the strength to decide for themselves not to use aids, but motivation is what helps us all fight our daily problems.

Dear Sam GH,

A wheelchair becomes essential after Falls become too frequent and dangerous also when its too tiring and worrisome to walk around, It's not the end of the world...xoxo N

Hidden
Hidden

Hi,

Years ago I was told 'you'll just know'; you'll simply feel the time is right.

I went for ages with an ordinary manual wheelchair, but now have a Shoprider, electric wheelchair - a delight around the home and outside. But the point is they're not only for the disabled - they often have hire places attached to hotels, large shopping centres, holiday resorts, city centres etc., for anyone. Able-bodied folk who just want to ride rather than walkabout. These machines shouldn't be thought of as a depressing need and sign of disability for the user. Instead, they're like a different type of motorbike, or car - not a symbol of disability, but simply helpful, good fun.I'm just saying is all - I'm not assuming you're fed-up with the need (if there is one).

But I hope some of this is helpful.

Very best wishes.

A lot of the new wheelchairs have push handles that fold away so they can't be seen into the back of the chair; you can't be pushed unless you want to (believe me it makes a huge psychological difference).

I got my chair about 4 years ago and it's opened up a whole new way of life, I can take my time and have the energy to stop and talk to people (I was on crutches before and my joints were wearing out). In fact I'm now volunteering one day a week in a local art gallery.

One thing I would say is that some of the 'big names' are complete sharks, they sent someone who measured me up ok, then told me I'd need a lot of the optional extras.

I was gobsmacked at the cost from the 'big name', but fortunately I had a copy of the all important measurements and went to this lovely independent outfit in Middlesborough who got me the same chair (a Xenon Quickie) and saved me a small fortune (I ordered the anti tip wheels but found I didn't need them).

Stay as active as you can dont let go of use of your muscles youll know when you need a wheell chair as my wife has one 5 years with cellebrel Ataxia i am her caretaker shes 60 im 69

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