Experiences of a Newbie Wheelchair User

[Marc]

Over the last 10 years, I’ve gone from no aids to stick to crutches to walker. Now the walker is not as much help as it was, I still lose my balance and lurch sideways (although I haven’t gone over yet).

 

I still work full time and hope to do so for some time yet so getting about outside the home is essential for me. Last week, the brake on the Walker went kaput and I had to dig out my crutches which I can just about get around the house with but I’m too unstable outside with them. As it happens, I do have a wheelchair but it’s very basic and rather heavy. I’ve had no choice but to take it to work and use it there.

 

Here’s the thing though. I’m finding it much more comfortable getting around in the wheelchair, although it’s frustrating having to get others to open doors if they have to be pulled, but it’s a struggle getting the chair ink and out of the car and opening/closing it. The chair is an Invacare Action 2000 and is described as “lightweight” but I’m guessing that’s relative.

 

Experiences so far:

• A slight incline which is normally unnoticeable becomes the north face of the Eiger
  
• People are incredibly helpful in general
  
• If you are in a group having a conversation (and the others are standing), you are pretty much invisible
  
• You want to cause physical harm to the person who decided it was a good idea to put a spring hinge on a disabled loo door*
  
• Using a wheelchair has less of a toll on my body than a walker or crutches
  
• Doorways are narrower than you think which is tough on the knuckles
  

So there may be a decision to be made. I’m waiting for a part to fix the brake on my walker, do I continue to use the wheelchair at work? My house isn’t wheelchair friendly but the walker will be better than crutches.

 

Sorry if I’ve waffled but hope all this makes sense

 

 

 

 

 

*on this note, is it just me that thinks it strange to have a pedal bin in a disabled loo?

[Nindancer]

I can only use a pedal bin with the help of a crutch so I'm a 100% with you on that.

I haven't used my walker in ages but I should try it again. I got a Musmate and I somehow felt crutches were probably safer with that as I'm sprung loaded! But yes, the brakes are easy to hold so maybe I'll have a go.

 

Sonia x

[Nick]

Hi Marc

 

I have an Action 2000 which I only use when I have to! I suppose that if I was at work I would use it all the time but prefer to use two sticks. The disadvantage being the limited 'range' and of course damage to shoulders. The incline problem is a big one with a wheelchair when you have MS. In my case the right side of me is very weak and this puts an uneven strain on the right side, making inclines difficult. I looked into this sometime ago and found the Alber e-motion wheels. http://www.alber.de/en/products/wheelchair-drive/mobility-wheelchair-emotion.html

I would love to have these but the cost of them along with a light weight chair would be in excess of £5000. I tried them out and they are amazing, compact and simply the best! Just a thought but have you tried getting a grant through the 'access to work'?

https://www.gov.uk/access-to-work

I know a few people on here have been given some very good help under this scheme.

 

Nick

Edited 20 Jun 2017, 9:25 am by Nick

[Marc]

I can only use a pedal bin with the help of a crutch so I'm a 100% with you on that.

I haven't used my walker in ages but I should try it again. I got a Musmate and I somehow felt crutches were probably safer with that as I'm sprung loaded! But yes, the brakes are easy to hold so maybe I'll have a go.

 

Sonia x

 

Hi Sonia

 

The Musmate looks interesting although I think I may be little too far along now for it to be effective for me.

 

Hi Marc

 

I have an Action 2000 which I only use when I have to! I suppose that if I was at work I would use it all the time but prefer to use two sticks. The disadvantage being the limited 'range' and of course damage to shoulders. The incline problem is a big one with a wheelchair when you have MS. In my case the right side of me is very weak and this puts an uneven strain on the right side, making inclines difficult. I looked into this sometime ago and found the Alber e-motion wheels. http://www.alber.de/en/products/wheelchair-drive/mobility-wheelchair-emotion.html

I would love to have these but the cost of them along with a light weight chair would be in excess of £5000. I tried them out and they are amazing, compact and simply the best! Just a thought but have you tried getting a grant through the 'access to work'? https://www.gov.uk/access-to-work I know a few people on here have been given some very good help under this scheme.

 

Hi Nick

 

Yes, I've see the e-motion but would have to start playing the lottery! I've been referred to Wheelchair services so we'll see what they come up with.

 

Interestingly, using the walker has caused me a lot of pain in my shoulders which has caused me problems with sleeping. Since the brake malfunction, I've been using the wheelchair and the shoulder pain has disappeared.

 

I've just bought some weights that I can use when watching the telly, I'll see if those can beef me up.

[Nick]

My Action 2000 was provided by wheelchair services around 5 years ago. I find appropriate exercise is also very important. The old, over used adage, of 'use it or lose it' is very true. When first diagnosed with MS I was told by an MS Nurse 'not to put myself into a wheelchair' There is a lot of sense in that..........yet finding the right tools for the job and learning what is appropriate for you is a skill in itself. ..........it took me long enough to learn how to use sticks correctly!

I use weights every week during a 'seated exercice group' I attend. Having a really well qualified and able person teaching the group is so important in getting the best out of it. The big plus of group exercise is also the way it becomes part of your weekly routine and has a social element to it as well. I'm not good at the discipline of keeping up an exercise regime on my own!

Perhaps my most useful bit of equipment is a scooter. Very very useful but it also has limitations. I don't use this in shops but only as a replacement for a bike. (Can't use one of those anymore) My car has modifications with a steering wheel knob and left foot accelerator. Combined with adaptive cruise control, and auto gearbox this makes it possible to continue driving, all be it much less that I used too. I would recommend that anyone who is concerned about their ability to drive should get themselves on a drivability assessment. This was a big help to me.

 

Nick

[Scully]

Hello All,

 

I found the first use of a manual wheelchair just dreadful.

 

First trip out my husband pushed me when we wisited a national trust place...

I found it awful the way the staff, on entry, ONLY spoke to my husband, even telling him, not to use the red routes as I may tip out and full in the lake....she didn't even glance at me.

 

The next trip out was to a local seaside town, Himself wanted to get something in Marks and Spencer. Men's department was upstairs, so I said I'd be happy to wheel myself around downstairs...I got stuck between the rails a few times, and also ran over 2 small children when trying to reverse out of another 'aisle' almost bringing an entire rack down in the process... I found a dress I quite liked, so proceeded to the checkout. Still wheeling myself...

In the queue, my husband caught up with me and although I handed over the dress and my debit card, she also, only spoke to him, even handing MY debit card back to him...not me.

 

It would seem that if folk see you in a wheelchair....they think you are brain dead as well...

 

It has made me very reluctant to use the thing ever again....so I find myself declining trips out that may involve long 'walks'

 

The only time I was 'accepted' and spoken to normally by fellow humans....in Barbados, Spain, Madeira and Italy....who showed great help and respect..

 

Scully

 

[Marc]

My Action 2000 was provided by wheelchair services around 5 years ago. I find appropriate exercise is also very important. The old, over used adage, of 'use it or lose it' is very true. When first diagnosed with MS I was told by an MS Nurse 'not to put myself into a wheelchair' There is a lot of sense in that..........yet finding the right tools for the job and learning what is appropriate for you is a skill in itself. ..........it took me long enough to learn how to use sticks correctly!

I use weights every week during a 'seated exercice group' I attend. Having a really well qualified and able person teaching the group is so important in getting the best out of it. The big plus of group exercise is also the way it becomes part of your weekly routine and has a social element to it as well. I'm not good at the discipline of keeping up an exercise regime on my own!

Perhaps my most useful bit of equipment is a scooter. Very very useful but it also has limitations. I don't use this in shops but only as a replacement for a bike. (Can't use one of those anymore) My car has modifications with a steering wheel knob and left foot accelerator. Combined with adaptive cruise control, and auto gearbox this makes it possible to continue driving, all be it much less that I used too. I would recommend that anyone who is concerned about their ability to drive should get themselves on a drivability assessment. This was a big help to me.

 

Nick

 

I actually bought mine 11 years ago. The advice I received was that, if you think it will help, use it. It stayed in the garage for many years though ad only came out when absolutely necessary.

 

I also- have a scooter which lives in the boot of the car. I bought it 3 years ago and it gave me a lot of freedom. It isn't always practical though, especially if you're out and about and want to pop in somewhere for food and drink.

 

I attend an MS Centre every fortnight which is brilliant. Like you, I'm not disciplined enough wen it comes to exercising. Maybe it's a man thing lol.

[Marc]

Hello All,

 

I found the first use of a manual wheelchair just dreadful.

 

First trip out my husband pushed me when we wisited a national trust place...

I found it awful the way the staff, on entry, ONLY spoke to my husband, even telling him, not to use the red routes as I may tip out and full in the lake....she didn't even glance at me.

 

The next trip out was to a local seaside town, Himself wanted to get something in Marks and Spencer. Men's department was upstairs, so I said I'd be happy to wheel myself around downstairs...I got stuck between the rails a few times, and also ran over 2 small children when trying to reverse out of another 'aisle' almost bringing an entire rack down in the process... I found a dress I quite liked, so proceeded to the checkout. Still wheeling myself...

In the queue, my husband caught up with me and although I handed over the dress and my debit card, she also, only spoke to him, even handing MY debit card back to him...not me.

 

It would seem that if folk see you in a wheelchair....they think you are brain dead as well...

 

It has made me very reluctant to use the thing ever again....so I find myself declining trips out that may involve long 'walks'

 

The only time I was 'accepted' and spoken to normally by fellow humans....in Barbados, Spain, Madeira and Italy....who showed great help and respect..

 

Scully

 

I do know that pain Scully. There's a phrase, "Does s/he take sugar" that sums it up perfectly.

 

On a slightly related note, as you mentioned The National Trust. Last year we visited an NT property on the Isle of Wight. We got into the car park and located the Disabled parking only to see a sign saying that the entrance wasn't accessible and that wheelchair users should be dropped of at another entrance where there was no parking at all.. One thing they didn't consider was where the wheelchair user is also the driver!

[Scully]

How extraordinary was that!

 

We went to a local NT place just recently, I had my walker with me, and a very helpful chap asked me if I'd like to make use of the electric one, as they keep several for patrons use!

 

My husband turned very pale when I said yes please....telling the chap that there would likely be blood spilled !

 

I had a lot of fun....and thought...if anyone ignores me today....I'll simply run over their feet...that'll get their attention huh?

 

Scully

[Marc]

How extraordinary was that!

 

We went to a local NT place just recently, I had my walker with me, and a very helpful chap asked me if I'd like to make use of the electric one, as they keep several for patrons use!

 

My husband turned very pale when I said yes please....telling the chap that there would likely be blood spilled !

 

I had a lot of fun....and thought...if anyone ignores me today....I'll simply run over their feet...that'll get their attention huh?

 

Scully

 

Ha, I remember the first time I used my scooter, my wife went a similar shade of pale!

[Marina]

I found it awful the way the staff, on entry, ONLY spoke to my husband, even telling him, not to use the red routes as I may tip out and full in the lake....she didn't even glance at me.

...

In the queue, my husband caught up with me and although I handed over the dress and my debit card, she also, only spoke to him, even handing MY debit card back to him...not me.

 

I might be wrong but I think I once read somewhere that this thing about looking at the able companion of someone in a wheelchair is something to do with the able person being at roughly the same height, eye-level wise, as the person talking to them. Totally wrong to do so, and quite insulting to the person in the wheelchair, but I suppose I can sort of see (no pun intended!) the psychology behind this theory (if it is indeed one)...

[Marc]

I might be wrong but I think I once read somewhere that this thing about looking at the able companion of someone in a wheelchair is something to do with the able person being at roughly the same height, eye-level wise, as the person talking to them. Totally wrong to do so, and quite insulting to the person in the wheelchair, but I suppose I can sort of see (no pun intended!) the psychology behind this theory (if it is indeed one)...

 

Sounds about right, similar to my 3rd bullet point in my 1st post.

[Marc]

Within a week of referral, I got a letter this morning from Wheelchair Services and I'm getting a visit next Friday!

 

I was reading the bumpf that came with the letter and the following was interesting.

 

Only in exceptional circumstances can we complete a home visit and you may be required to wait a little longer for this service owing to capacity

 

Now, I'm not complaining but I'm intrigued as to what makes my case exceptional. Can only assume business is slow.

[Skippysprite]

I get so irate in shops when I hand MY debit card over and they ask the person with me to put the pin in. I am afraid to say that I am ready for this and reply "does your taxi driver know your PIN number? I would be grateful if you can pass the machine down to me (even though the person with me is my hubby) but I so hate being made to feel invisible.

 

And as we all know, the other one is "does she take sugar" ggrrrr

 

Pam X

[Marc]

Well that didn't go as well as I'd hoped. Turns out that what I need isn't what I'm entitled to. All they can offer me is he equivalent of what I've already got. What I need is only available to those who are "wheelchair dependant"

 

Little bit short sighted if you ask me. If what I need keeps me working and paying tax & NI for that bit longer, surely that would more than offset the saving for the NHS which is only a few hundred pounds?

 

Ah well, I'll just have to struggle on.

[Stumbler]

Would "Access to Work" be an option for you?

 

https://www.gov.uk/government/publications/access-to-work-factsheet/access-to-work-factsheet-for-customers

[Marc]

Thanks John, that looks interesting.

[Marc]

Thought I'd give an update

 

I took John's advice (thanks John) and contacted access to work and they were very helpful. They asked me to provide 3 quotes and an NHS letter and voucher from Wheelchair services.

 

Sadly, Wheelchair Services didn't appear to be overly efficient in this instance. It took them over 5 weeks just to send me the form to apply for the voucher!

 

Anyway, I've talked to a few suppliers and it looks like I may be opting for one of these bad boys

 

http://www.kueschall.ch/product/k-series/

 

Then today, my employer told me that THEY would pay for the chair!

Edited 25 Aug 2017, 5:42 pm by Marc

[ptlike]

Hi Marc my experience with my chair mimics what yours are plus feeling of tipping over when going up a kerb. Good luck with new chair

Best wishes

Peter

[Marc]

Thanks Peter.