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

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.

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.

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.

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?

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

Thats great news!!

I 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