Viewing 14 posts - 1 through 14 (of 14 total)
  • #185975
    When To Start Using a Wheelchair

    Howdy all.

    At the moment, I’m still ambulant (and hope to be for as long as possible), and have started to use a stick within the last year. But I recognise that my condition will likely mean that at some point I need to use a wheelchair. For those of you that have been through the transition, how did you recognise the time was right? And did you go through any transition period of using one periodically? Or was it that once you got it, you used it the whole time?

    I hope the question makes sense!

    Jono

    JonoWhitehead JonoWhitehead
    Participant
    Posts: 0
    Joined: 05/09/2019
    #185976
    Reply To: When To Start Using a Wheelchair

    Hi Jono
    I also have LGMD2b and started using a wheelchair about 9 years ago. My walking had become very slow and I was struggling outside with uneven surfaces etc. I approached my local NHS wheelchair service who provided a manual chair which I used when out and about but I became increasingly frustrated at being reliant on someone to push me as I had lost arm strength to self propel. About 6 years ago I got a powered chair which gave me back my independence. I use it now pretty much all the time inside and out. I am still walking but only short distances.
    Hope this helps.
    Suzie

    Suzie
    Participant
    Posts: 11
    Joined: 31/07/2011
    #185977
    Reply To: When To Start Using a Wheelchair

    Thanks Suzie. I also have 2B. Did the NHS provide the powered chair, or did you have to pay for it yourself?

    JonoWhitehead JonoWhitehead
    Participant
    Posts: 0
    Joined: 05/09/2019
    #185978
    Reply To: When To Start Using a Wheelchair

    The NHS have provided it but I had to show that I needed it indoors first. The first powered chair they provided was for indoor use only but I didn’t use it often as it didn’t have a seat riser which I need in order to get out of the chair. I had that for about 6 months before approaching them again for an indoor/outdoor chair. I now have a Quickie Q500M with the seat riser.
    Not a quick process but these chairs retail for £7000 with the riser function so I’m grateful they provide it.

    Suzie
    Participant
    Posts: 11
    Joined: 31/07/2011
    #186015
    Reply To: When To Start Using a Wheelchair

    I think you may well find it a gradual process Jono. Most of us here find their condition sowly worsens and thus you adapt to those changes just like in Suzies case. My own is very similar. Most of the time outside I am in wheels. in the home one or two sticks. I know I cam getting worse so I am using sticks more and using wheels more, whilst at the same time thinking how I can adapt my home when the wheels are permanent. On the other hand I do force myself to walk as much as I can to try and keep that mobility longer.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #186029
    Reply To: When To Start Using a Wheelchair

    Jono, my neurologist told me to “use it or lose it”. This was in response to me asking about maybe using a mobility scooter. I struggle on in pain using a stick, and hope to continue doing so for many more years. I am like you, thinking about making that transition, but am equally terrified of losing the ability to walk if I surrender to the seductive, siren call of wheels.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #186063
    Reply To: When To Start Using a Wheelchair

    When to start using a wheelchair ?

    When function and safety become more of an issue. If you find your missing out on activities or at risk from a fall then nothing wrong with using a chair. It’s very personal and when your ready. Save your energy for good days.

    When I first started it was hiring from mall shop mobility. Using shop to shop and leaving outside shop to potter about. Then bought my own to keep up with little nephew. To be safe to have him out just myself. It’s been 15 years since I started using wheels and I’m only just becoming reliant. It’s not a case if you have it and can only use chair.

    See any aid. Chairs. Walkers. Canes as expanding your mobility not reducing. You may find you have more energy and get more done see more places.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #186064
    Reply To: When To Start Using a Wheelchair

    When to start using a wheelchair ?

    When function and safety become more of an issue. If you find your missing out on activities or at risk from a fall then nothing wrong with using a chair. It’s very personal and when your ready. Save your energy for good days.

    When I first started it was hiring from mall shop mobility. Using shop to shop and leaving outside shop to potter about. Then bought my own to keep up with little nephew. To be safe to have him out just myself. It’s been 15 years since I started using wheels and I’m only just becoming reliant. It’s not a case if you have it and can only use chair.

    See any aid. Chairs. Walkers. Canes as expanding your mobility not reducing. You may find you have more energy and get more done see more places.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #189162
    Reply To: When To Start Using a Wheelchair

    I too am asking this question often!was glad to find this thread. I flit between times when I am using a stuck outside because I trip over….then I’m on a walking holiday (like now) and spending 2 hrs walking. The latter does result in pain and severe exhaustion and is not easy. For others it seems to be?! I should slow down. Then when I’m walking I often long for a ride on wheels as its so damn hard. And this seems crazy as I CAN manage to walk for ages. But it debilitates me afterwards. Also, I always fall asleep as soon as I’m sat down afterwards.

    Pips
    Participant
    Posts: 0
    Joined: 04/03/2019
    #189180
    Reply To: When To Start Using a Wheelchair

    Its often a fine line of keeping going to maintain ability and walk for as long as possible and not overdoing it. Not sure there is a correct answer.

    Have you thought about a walker with a built in seat to give you support. carry stuff and be a handy seat for when you just need to sit down?

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #189213
    Reply To: When To Start Using a Wheelchair

    Hello Jono,

    I use a mobility scooter. It was suggested by my medical team at my annual appointment. I have moved from being ambulant without aids to furniture walking to using two walking sticks and then to a mobility scooter and when inside a tri walker as walking sticks do not offer enough support.This has been a gradual process. My medical team thought a scooter would be better for me than a wheelchair.

    I hope you are able to make a decision. I would also talk to any specialists that you see.

    Shevvy

    shevvyt1
    Participant
    Posts: 0
    Joined: 16/11/2013
    #189533
    Reply To: When To Start Using a Wheelchair

    When i walk the pain gets the better of me its like a burning sensation on the balls of my feet what get really sore i end up laid in bed for 2 days after. My physio said he does not want me walking at all. Im not following that advice as i dont want to feel astho im loosing my ability to walk although i know its coming. I just hope it isnt soon but im already preparing to get myself a couple of cains and a chair because im on my tip toes. Its a personal decision and a big one at that. Good luck

    Paulmitchelson26 Paulmitchelson26
    Participant
    Posts: 0
    Joined: 02/09/2020
    #189573
    Reply To: When To Start Using a Wheelchair

    I figure I should probably update this! I received an NHS wheelchair about a month ago. It’s very difficult to move around outside in it, but when I’m at work (in a shop) it’s pretty good. I’m finding my shoulders are getting very sore from it, and I know my form of MD affects my shoulders. I’m looking at getting a motorised set of wheels on a new wheelchair.

    I love using the NHS one, outside of the fact that it’s fairly heavy. I’ve used it once a week since I got it, more or less, and I love the lack of fatigue in my legs that I get when I’ve used it. I’m looking forward to using my new one on days out!

    JonoWhitehead JonoWhitehead
    Participant
    Posts: 0
    Joined: 05/09/2019
    #189574
    Reply To: When To Start Using a Wheelchair

    Thats great news!!

    Pips
    Participant
    Posts: 0
    Joined: 04/03/2019
Viewing 14 posts - 1 through 14 (of 14 total)

You must be logged in to reply to this topic.

Keep in touch