Part-time Wheelchair

General
1

My symptoms get drastically worse in the afternoons/evenings. I'm a student and I just walked back from my last class (around 5:30pm my time) and I think I could sleep for a week. I was walking so slowly and my bad leg was dragging. Now I'm exhausted.

Do any of you use a wheelchair for when you have to walk long distances or later in the days? As much as I would hate to succumb to a chair right now, I feel it might be necessary because I just cannot walk anywhere in the afternoons. If you do use a chair, what kind? Many thanks!

-Runner

2

Do whatever you have to, to make things easier for yourself.

I don't use a wheelchair...yet, so I can't advise you there.

3

I wonder if you have tried rollator with a seat. It really does help with conserving energy spent when struggling to walk unaided or even with a stick. A 3-wheeler is easier to 'park' out of the way but a 4-wheeler with seat is a real boon when you need to sit and rest.

I really admire you for persevering with classes as I know the afternoons can make you feel wiped out.

4

http://forum.livingwithataxia.org/forum/topics/part-time-wheelchair

Hi - It took me a very long time to accept that I needed to use a wheelchair in order for me not to further injure myself.

It was in-no-way easy to accept this fact, especially with the surrounding perceptions that others have of using a wheelchair - especially when using a wheelchair is lumped in with other deficits that have absolutely nothing to do with my particular obstacles, etc.

The main thing that I try to stay focused on is how my wheelchair provides me a sense of freedom. That probably sounds counter-intuitive, but let me explain.

Where I really need to concentrate and focus on not falling, a wheelchair provides stability that I need in order to simply talk and socialize in-person with others. With that stability and security that a wheelchair provides me comes the freedom.

An example of how my wheelchair helps me: I like to cook things and make things. Just like I need eggs or flour as raw products as a part of a recipe to make something, so do I need my wheelchair, as a raw product, if you will, to produce my freedom.

I see it as more of a means to an end, rather than seeing it as the end itself. This is what I choose to focus on.

It’s just a different perspective that I choose to take. It works for me.

5

I personally have a go go 3 wheel scooter and a walker my belief is that once you start to use wheelchairs your legs will not want to work for you they become lazey. As for myself I try to use my walker as much as possible.
I hope I was able to help you out.

6

I use my walker most of the times, uses shopping carts when available. Also, uses the wheelchair when necessary. Long distance walking is mostly when I use the wheelchair.

7

Dear Runner, I use a quad-cane when I leave my home, but am able to walk in my home, very carefully, without it. I have an Access Active Rollator that I use for pleasure walks outside and LOVE it! It has a seat if I get tired and need to sit awhile. The seat lifts up and there's a removable basket, plenty of room to put things. It has hand brakes and the handles adjust easily for height. It has two large wheels in the front a two smaller ones in the back, which allows it to roll smoothly over grass and dirt (although I use it mostly on pavement or asphalt), It's very sturdy/solid, designed in Norway, made in China. It folds easily, as I keep it in the back of my SUV. Everything about it is easy! I bought it on Amazon (online), as Amazon had the best price. I feel safe and secure and can really walk quickly when using it, a huge difference from my cane! I don't use a wheelchair at this point, so I can't advise you, so sorry. I really admire you for continuing your schooling..., ;o)

8

When I first started using a wheelchair I only used it when I had to go relatively long distances. I carried on doing things myself for as long as I could - I didn't like the idea of being dependent on anything, but, as been said already, using a wheelchair can give you freedom. I think you have to do exercise to compensate for being off your feet though, because it's easy to rely on your wheelchair more and more. Oh, and if you're talking about using a manual wheelchair you should bear in mind that self propulsion is not exactly easy, but it depends on how fit you are I suppose.

Now I use a wheelchair all the time, and I think that using a wheelchair improved my quality of life. Although I hate using it I have done things (like getting a degree) that I wouldn't have been able to do otherwise. It's like you reach a point where you have to decide whether keeping yourself as strong as possible is worth it.

9

Saw this & my heart goes out to you, don't put yourself through the exhaustion not worth it. I have had a wheelchair for a number of years now, if we are going anywhere where there will be a lot of walking we take the wheelchair. For me there are 2 reasons

1: I am the same as you & realized it just isn't worth the fatigue, I also have back problems as well & can do without the pain as well.

2: It is unfair on the people who go with me if they are constantly worrying about me, with the chair everybody can enjoy the day out.

Mine is self wheeling ?? although if I get tired someone else can push it.

10

Just thought have seen scooters as well which would get you where you need to be quick sticks :)

11



Glitter on Butterflies said:

http://forum.livingwithataxia.org/forum/topics/part-time-wheelchair


Hi - It took me a very long time to accept that I needed to use a wheelchair in order for me not to further injure myself.

It was in-no-way easy to accept this fact, especially with the surrounding perceptions that others have of using a wheelchair - especially when using a wheelchair is lumped in with other deficits that have absolutely nothing to do with my particular obstacles, etc.

The main thing that I try to stay focused on is how my wheelchair provides me a sense of freedom. That probably sounds counter-intuitive, but let me explain.

Where I really need to concentrate and focus on not falling, a wheelchair provides stability that I need in order to simply talk and socialize in-person with others. With that stability and security that a wheelchair provides me comes the freedom.

An example of how my wheelchair helps me: I like to cook things and make things. Just like I need eggs or flour as raw products as a part of a recipe to make something, so do I need my wheelchair, as a raw product, if you will, to produce my freedom.

I see it as more of a means to an end, rather than seeing it as the end itself. This is what I choose to focus on.

It's just a different perspective that I choose to take. It works for me.
12



Errilyn said: Wow lovely way to look at it



Glitter on Butterflies said:

http://forum.livingwithataxia.org/forum/topics/part-time-wheelchair


Hi - It took me a very long time to accept that I needed to use a wheelchair in order for me not to further injure myself.

It was in-no-way easy to accept this fact, especially with the surrounding perceptions that others have of using a wheelchair - especially when using a wheelchair is lumped in with other deficits that have absolutely nothing to do with my particular obstacles, etc.

The main thing that I try to stay focused on is how my wheelchair provides me a sense of freedom. That probably sounds counter-intuitive, but let me explain.

Where I really need to concentrate and focus on not falling, a wheelchair provides stability that I need in order to simply talk and socialize in-person with others. With that stability and security that a wheelchair provides me comes the freedom.

An example of how my wheelchair helps me: I like to cook things and make things. Just like I need eggs or flour as raw products as a part of a recipe to make something, so do I need my wheelchair, as a raw product, if you will, to produce my freedom.

I see it as more of a means to an end, rather than seeing it as the end itself. This is what I choose to focus on.

It's just a different perspective that I choose to take. It works for me.
13

Runner,

I have used a wheelchair for long distances but prefer to use my scooter for more independence. About every 2 years we go to the beach, and this makes it so much easier. People hang their purchases off of it and it allows them freedom too. I find it easy to maneuver and have even managed public restrooms with it. Walking can be a very tiring chore.

14

Thanks for the replies everyone. I'm going to try to manage my energy levels better and try to improve my endurance so I won't have to use a chair just yet...

For those of you that use a manual chair (that you push yourselves), is it hard to use your arms to get yourself where you want to be?

15

Good luck:) I think that once you start using a chair it's very hard to go back to managing without one.

Er... when I started using a wheelchair I was really skinny and weak because I just had spinal surgery, so using my arms to propel was difficult. I had to build my strength up. But then, I guess a lot of people have to build up strength to make pushing yourself easier, even when some of my 'healthy' friends have a go in my wheelchair (what is the fascination?) they complain about how it makes their arms ache. It's just not as easy as it looks.

I just typed all that and realised you were probably talking about moving your arms. I manage but I don't move as fluidly as other people can - I'm not as quick to move my arms after moving the wheels, so I slow down before I push the wheels again. Also because my arms don't move as quickly things like going uphill are difficult and I still haven't the nerve to attempt going up a curb. To begin with I used to just get out and push my chair over obstacles, but now not so much.

It's also kind of tiring. If someone is having problems walking then using a manual wheelchair will be an improvement, but it does take energy to push it yourself (but it depends on where you're going -- uneven surfaces are horrible).


runner said:

Thanks for the replies everyone. I'm going to try to manage my energy levels better and try to improve my endurance so I won't have to use a chair just yet...

For those of you that use a manual chair (that you push yourselves), is it hard to use your arms to get yourself where you want to be?

16

Hi runner,

(Yet another incoming wall of text I'm affraid!)

I had a quick read / skim of the posts so far and thought I'd chip in!

I have written on these forums about my lack of enthusiasm regarding accepting that I, sometimes, need to use a wheelchair. I do not remember stating one of the main reasons for my trepidation concerning me and wheelchair use. As I wrote in a recent post though I have gone through the stages of walking sticks > elbow crutches > mobility scooter use and now use a wheelchair if 'out and about' away from my home town.

I know that this thread is not about me, it's about you and others that may be coming to a stage in life where wheelchair use is essential (if less than desired). I think I need to tell my tale though so as to show how I have come to accept wheelchair use as a boon.

Way back in the mists of time, when cavemen hunted dinosaurs (dones flame proof suit), I was a very active teenager. Never any good at football or other 'conventional' team sports, I enjoyed long distance runs, longer distance hikes, rides to far flung towns on my bike (they were far flung to me back then) and I took part in other outdoor sports such as rock climbing, orienteering and canoeing whenever I got the chance. Though I did not compete at sports and was not particularly muscular, I was generally quite fit.

One time , when I was (about) fourteen, I was rushed into hospital as I had very suddenly lost use of both my legs and had stiffness in both arms*. I was assessed by a number of health professionals and had to endure two 'lumbar punctures' (I impressed a nurse as I did not even flinch while they where done). Longer story short, I spent about a week in hospital with most of the time in bed and unable to walk. With the help of the hospital ward nurses, I eventually got back to my feet and walked. This is truth - not conveniently made up as some sort of inspirational device!

So! What has that story to do with this thread? The thing that made me most determined to get back on my feet was what one of the wonderful nurses talked with me about. It boiled down to this from the nurse; you have a choice - either get up and walk or spend the rest of your life in a wheelchair.

REWIND!!

I realise that I may not be using the correct story in this thread and that what I just wrote may not be what people want to read. - it is, after all, somewhat crass.

When I was a child the prospect of life in a wheelchair frightened me. I could easily defend my argument though that the prospect inspired me. I did, after all, start walking again - it took time and effort but I did it.

I think that anyone reading this can now see why, as an adult, I have been so very much against using walking aids. Thing is, life, cirumstance and maturity are all different now - I am no longer a child. When I recently had to start to use walking sticks to help because of my health condition(s) I used them. Same with elbow crutches, mobility scooter and now my wheelchair.

Some people are disabled all thier life or from an early age. Others, like me, come to disability later. For those in the latter group, adjusting what they do and how they do it because ill health or health condition(s) force the changes can be extremely difficult. Life can seem harsh when these changes need to be made. All is not lost though!

My mobility scooter is my 'sidekick' so to say and helps me get around to do the things I want to. My wheelchair affords me the chance to go further away from my home and is a real boon. Sure! There are times I am incovenienced using walking aids, my scooter or wheelchair but the pros outwiegh the cons to the nth degree.

Try not to look at it as 'succumbing' to wheelchair use as much as taking the opportunity to liberate yourself with the help of a wheelchair. Try not to despair - I know only too well how despairing can make matters worse.

If you can get your energy back up or improve endurance then that can only be good (remember not to over do it). I will write that, as willow posted, getting used to a manual self propelled wheelchair is hard work but the positive is that you get a good workout! Curbs, up hill and uneven surfaces can be 'hell' even to experience wheelchair users but we get used to it.

Sorry if my story came off as scary or crass or offensive. I wanted to show how bad I used to think about having to rely on apparatus to get around. I also want to show how my outlook on this matter has changed and how I passionately feel that it is not about falling to the machine but more about embrassing it when needed. Importantly, it's all about comfort and safety and enabling. The old cliche is often derided but I think it holds very true! Do not look upon yourself as disabled but as differently abled.

Kindest regards,

Michael.

*Note: I found out a lot about my heath history after first seeing my GP about ataxia and in the following years. I was recently reminded (I genuinely forgot) the 'lumbar punctures' where enacted because it was thought that I may have had meningitis at the time. Who said "Spinal Tap"? Great group - go all the way to 11. :)

17

Thanks for your insight, Michael! Definitely not crass at all. Something I needed to hear

18

NP! I was on a bit of a rant - or more correctly many rants - when I wrote that. It was 'one of them days'. I'm sure you know the type of day I mean - where several 'things' conspire to fill us with steam that just has to be let out. (Witness my other post made on same day).

Anywho, good luck in your endeavors. :)