How many of you use a wheelchair part time? I have FND but still suspect MS (second neuro referral is in the pipeline) and have various symptoms but the fatigue, dizziness, ‘numbishness’ (paresthesia) and involuntary movements (myoclonic jerks) have begun to affect my mobility. I got a stick a few weeks ago, which helps with the occasional poor balance but tried out a courtesy wheelchair in a big supermarket. It made such a positive difference that when my family and I visited a large museum recently, I borrowed a courtesy wheelchair and used it all day. I don’t think I would have managed to last as long as I did, not to mention the long journey home by public transport, without it. I’ve ordered myself a lightweight, foldable one with detachable wheels and foot rests, so we can take it on long days out. I am still waiting to see a physio, though. Do any of you have any newbie wheelchair-user tips?
I have used one when my legs pack in totally. I find them alright in supermarkets or places with a smooth, flat floor; but quite difficult outside. It also really hurts me neck and arms. They are great though to get you out and about. Xx
I have been using crutches for a while now, but am struggling more and more with these because of the balance, weakness, fatigue, legs not working properly etc.
My lovely hubby suggested we invest in a lightweight wheelchair so we can “do stuff we can’t do at the moment”. I really don’t want to have to use one as it feels like a massive step backwards, but this made me realise how much my health issues are restricting what we can do and that I owe it to my lovely, patient, long-suffering hubby to get one so we can go out for longer and do more things together.
I hope you find yours useful, Reiki…do let us know how you get on with it xx
Go for it, Purpledot! It is a tool, after all. I read on a blog somewhere that ‘people don’t spare a thought about getting a car to help them get around, a wheelchair isn’t really any different’. (Paraphrased) I’m looking forward to getting mine. After much searching and weighing pros and cons, I’ve opted for an Enigma Spirit by DriveMedical. The blue one 
Purpledot, I am not ready for a wheelchair or mobility scooter as a regular thing but I tried a mobility scooter out recently for a weekend on guide camp and it made such a difference - last year I was exhausted, this year I felt much less tired at the end of camp. Having the scooter to get me down and up the hill from our site to the activities and back made everything else much easier.
Using the mobility scooter on camp this year was an experiment for me but it worked and if I go to big tourist sites in future, I will certainly consider borrowing a chair or scooter. Not only will I enjoy things more if I’m not tiring myself out, but so will my husband.
Yay, my blue Enigma Spirit lightweight self-propelled wheelchair arrived yesterday! I got it from Careco via ebay (though they have a proper website, too). I have yet to test it outside but am very happy that all the foldable/removeable bits are easy to use. Even my 5 year old could self-propel so it is going to help me conserve energy. Are there any good links to first time wheelchair user advice? I’ll inform my physio when I have my first appointment and hope they help me with that. I miss riding my bike, not that I’m a natural or frequent cyclist but it was nice to have the option. That isn’t a safe option anymore, so I’m going to enjoy these new wheels
I had a surprise this morning when a letter came through. By the postmark,I thought it was my long-awaited Chronic Fatigue therapy course date…but no. Three months free wheelchair insurance! I’d not even considered that. Hubby and I packed littl’un and the wheelchair in the car the other day, so I could practice (plus the day before I’d managed a gentle hike and my legs were rather jelly-like as a result). Pavements in town that I’d always assumed to be flat and even revealed their true natures. I was often being steered toward the road when I thought I was pushing straight. The couple of small shops I went in were easy enough but my arms and shoulders really felt the workout. Hubby pushed when I got too tired but he didn’t let me off the hook, saying I needed to get used to it. Sitting definitely reduces the dizziness and it doesn’t matter if my body decides to do jerks worthy of a zombie film. Our dauhter was delighted that I was seeing the world from her eye-level! Plus, I had a good seat to watch her enjoy herself at the park. I decided to tell my friends, near and far, via Facebook. So much easier than explaining it repeatedly! The comments I’ve received have been supportive and kind (and a bit jokey in a good way). I’m feeling much less awkward about it now
Aw lovely to hear that you’re doing alright with it. It’s good that you are getting out and enjoying it. Xxx
Thanks Beverly. I’d really like to hear from other self-propelled wheelchair users please. Tips and advice?
I have been a part-time user for a few years.
my tips are:
good quality wheelchair gloves.
a comfy seat cushion (you may qualify for an NHS grant towards this.
anti-tips for the chair to prevent going over backwards.
RADAR key for wheelchair accessible loos
also look into all offers where a carer/2nd person can get discounts into many venues if accompanying wheelchair users.
i use my chair in the UK & abroad and it really helps me.
Neil
Thanks Neil! I got an Enigma Spirit by Drive Medical. It came with anti-tips, a 1 1/2" seat cushion that has an eggbox texture under the smooth wipeable covering. After seeing a lady wheeling round the museum with gloves, I got a good pair from ebay. They are fingerless, with velcro wrist straps and padding on the palms which has helped a lot when slowing down! How do I get a RADAR key? I have to say that I didn’t go through the NHS for my chair (they’ve made me wait so long for things to happen) so I chose to use my ESA to get one myself. I’ve been practicing up and down my patio today and managed to do a little wheelie. I got stuck trying to get up a dropped kerb from the road because I didn’t know how to lift up the castors yesterday. My 5 yr old came to the rescue, bless her. I did get tired and ended up getting out and pushing it up the path. We’d only gone down the street and round the corner to a friends!
I used my wheels again yesterday as the previous two days I’d done a fair bit of walking (with my trusty stick) and physio…probably overdid it a bit. We went shopping for school shoes and it was a pleasure to wheel around a nice, reasonably smooth outdoor shopping centre. Littl’un sat on my lap and had a few mummy-bus rides.
We went into a restaurant and had to wait for an accessable table. The waiter looked straight at me and said to take a seat whilst we’re waiting. There was a moment of awkward expression as he realised that he’d said that to someone already seated…
On the whole I had another good experience again. Hubby or littl’un pushed me occassionally but I got myself around quite easily. You are considerably wider sitting in a wheelchair and I was very aware of where I couldn’t fit, but most aisles were fine. This morning, I’m feeling the workout (my arms and shoulders are not used to this!). It saved me from feeling too dizzy, or being worried about tripping and makes me less self conscious of doing myoclonic jerks.
However, for the school run which is a four mile a day walk if I don’t get a lift, it has been suggested to me again to get a mobility scooter. Hubby is worried that I won’t be getting my exercise, I wonder if I could use it to do the pick-up run. I’d love to ask the opinion of the CFS/ME group therapy team…but I still haven’t had a date through.
I bought one some years ago when I had other problems, and I seem to recall it turned up fairly quickly. I only used mine once or twice, but I liked the peace of mind of having the key “just in case”.