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March 4, 2020 at 7:19 pm #185975When 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
March 4, 2020 at 8:36 pm #185976Reply To: When To Start Using a WheelchairHi 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.
SuzieMarch 4, 2020 at 11:33 pm #185977Reply To: When To Start Using a WheelchairThanks Suzie. I also have 2B. Did the NHS provide the powered chair, or did you have to pay for it yourself?
March 5, 2020 at 9:53 am #185978Reply To: When To Start Using a WheelchairThe 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.March 6, 2020 at 12:50 pm #186015Reply To: When To Start Using a WheelchairI 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.
March 7, 2020 at 12:24 am #186029Reply To: When To Start Using a WheelchairJono, 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.
March 9, 2020 at 9:30 pm #186063Reply To: When To Start Using a WheelchairWhen 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.
March 9, 2020 at 9:30 pm #186064Reply To: When To Start Using a WheelchairWhen 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.
August 18, 2020 at 7:27 pm #189162Reply To: When To Start Using a WheelchairI 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.
August 22, 2020 at 5:51 pm #189180Reply To: When To Start Using a WheelchairIts 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?
August 25, 2020 at 4:27 pm #189213Reply To: When To Start Using a WheelchairHello 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
September 2, 2020 at 7:28 pm #189533Reply To: When To Start Using a WheelchairWhen 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
September 4, 2020 at 4:23 pm #189573Reply To: When To Start Using a WheelchairI 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!
August 22, 2022 at 10:27 pm #202690Reply To: When To Start Using a WheelchairJust a versatile update on my situation- I have just got a mobility Scooter for use on family walks and dog walks and I love it. I can finally be out for longer and not get so exhausted. I was getting so sleepy just walking, and walking even short distances makes me fed up now. Not painful as such, and I do almost trip sometimes and my legs give way often…but mainly its just a constant leg fatigue. Like every step is extra effort. Anyone else get this? I am a teacher and going back to work full time in September. I’m so tired, even during the summer holidays, that I wish I had a powerchair for work. My husband thinks that’s crazy as I ‘walk ok’ and rarely fall. When did you all know when it was time to use chair or scooter indoors?
Also, my tiredness as in the sleepiness..drs say heart and lungs are ok but its like I’m not breathing well enough or something because I get an overwhelming need to sleep if I walk. What’s all that about?August 23, 2022 at 1:04 pm #202691Reply To: When To Start Using a WheelchairI can relate to all the feelings you have had about mobility. FHSD has of course been with me since birth but wasnt found until around 45. But it made its presence felt and gradually my legs got worse. Like you it appeared I could walk ok, with sticks, but the fatigue, and pain were almost overwhelming. I tried a scooter one Christmas whilst shopping and the relief was amazing. I could do Christmas shopping without getting over tired. using a scooter indoors will be extremely hard unless you have a huge house, as you may well have found navigating around shops is a major challenge. Thus you may find a motorised chair is the best way forward. It has a smaller ‘footprint’ and is more manoeuvrable in tight spaces.You may well find the same at work. You might want to consider how Access to Work can help you, especially if you are going to be doing a lot of walking and carrying material as well which is inevitable in your profession. The problem may also arise with the doors which you have their which I suppose are very heavy and difficult to open being fire doors. Such chairs though do come at a price as has been indicated above, and you may well not have the funding locally to buy one for you like Suzie has mentioned for herself. You can and must ask though, starting with OT, if you can contact them, and/or your GP who may know about local sources of funding.
Tiredness and sleepiness is a whole different matter, and it is important you get to the bottom of it. Whilst your doctor has indicated that heart and lungs are fine, have you ever had a full assessment at a chest/breathing clinic? That would be essential as they can firmly establish what function you do have. I have similar problems too. I only discovered by accident, literally, when an X ray showed my right lung was in the same position as 15 years earlier. Since then I have had bilateral failure of my intercostal muscles, something that does not come along too often. I now use a ventilator which helps tremendously. What I am saying here is not that you may have the same problems but that you need to get the matter fully investigated. So push for full testing, but also talk with your GP, or even read the leaflet if you are on any meds to see if they affect your sleepiness. On top of that with MD, of any form, the extra effort that we have to put in to just general living, will add to our fatigue.
I might also ask you to consider something else, which I was told many years ago. Treat yourself like a battery. You can start a car and put lights on etc, but if you keep doing that without recharging it will go flat and give up. The same for those of us with MD. pace yourself, be aware that you only have so much ‘charge’ and always be cognoscente of how much you are demanding of your body and what it can give.
Please do keep us informed about your journey. it would be wonderful to hear about how your return to work goes.Mike
So many love songs, so little love.
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