Long covid with CFS, recommendations for mobility aids?

Hope123

Hello, I have long covid for just over 3 years now.  There are problems with my lungs which caused a lot of scans, tests etc and initially I thought that was the main problem.  However the fatigue & walking has been getting worse, and together with the very long wait for things to improve, I really miss going for outings with my family - 3 years is a long wait and I need some sort of wheels.  I can't really rely on family members to push me around to where I want to go so was thinking of something with a battery, plus this is what I was hoping the back pay from when I eventually was awarded PIP would fund.  I can walk around the house, albeit slowly & struggling on stairs & with prolonged standing.  I have a lightweight rollator through the NHS physio but am finding I can't get far on it without getting exhausted (I can literally manage 1 small shop, slowly, if I park right outside, on a good day).  As my arms are also likely to fatigue and I'd like to be able to keep using them, would they tire on a mobility scooter (from being outstretched holding onto handles), or not?  I wonder what others have found to be helpful?  Thank you. 

Cher_Alumni

Hello @Hope123 and a warm welcome to our online community, thank you for filling us in on your current situation. I'm sorry you contracted Long covid and understand your urge to get out and about again.

I have no personal experience in this area so am going to tag your post as 'unanswered' until others more savvy reply  However, you might want to take a read of Independent Living Buyers Guide to get a better understand of the mobility scooters and aids out there.

I've also moved your thread to our Aids, adaptations and equipment category and slightly tweaked the title to make it more visible to others.

Wishing you well with your future travels!

Cher_Alumni

Hi @Hope123

I'm just catching up with you, to see if you've had any luck in finding a mobility aid to help you get out and about. I really hope so if you can fill us in 

Hope123

Hi @Cher_Alumni,  I've tried hard to find an OT/physio to advise but haven't got there yet.  There are various mobility shows which would be good for trying lots of models but ... I can't get around them (yet!).  I've been to a few mobility showroom places and tried a few scooters, definitely worth doing, even if buying 2nd hand (which many of them also sell), as they vary so much.  I have a neck problem and have decided, after a 'jolt' on one that I really do need pneumatic tyres, but also that there are some which have armrests I can rest my arms on - have an adjustable tiller really helps, and the some of the TGA models have armrests which can go up & down.  I'm getting there, but still trying out models & deciding.  Almost there - will let you know how it goes.

Alex_Alumni

It's good to hear that you've made some progress @Hope123 this sort of thing is not one to rush We look forward to your next update as and when!

DayDreamBeliever

Hi @Hope123 I know exactly how you're feeling because I was in exactly the same position. After covid slowly losing the ability to walk. I'm still having the cause investigated but as of now I know that I have some form of neuromuscular disease that I've likely always had but has been developing slowly and was just exacerbated by covid infections.

Anyway on to mobility aids. I used crutches for about a year and a half but was hiring mobility scooters when I went to places like the zoo or a theme park. I was referred to wheelchair services and have an NHS transit chair (they have said they cannot give me a power chair until there's a diagnosis in place). And that's fine if we're just going to the shop or something but I needed to not be reliant on someone pushing me, I needed more independence. 

I knew I wanted to buy a lightweight folding powerchair as that is all that will fit in our car. I didn't want to spend much so at first bought an easy living mobility remote folding powerchair and it was awful. Truly awful (note they do not publish user reviews for it, I have tried to post but they will not approve it). It broke whilst I was on holiday in Paris. The hydrolics snapped. And the company was a nightmare for getting it refunded.

Eventually I did get a full refund and I then purchased a lith-tech smartchair-1 and it is fab. I can genuinely really rely on it and trust it unlike the last one. They were great as well when I called them as I was hesitant to buy another chair without trying it, they gave me lots of advice over the phone and advised which chair would be most suitable for my needs and why so I went for it and haven't looked back since. I love my chair, but the one thing I will say is that it's not overly comfortable when using it for hours at a time. My back does get sore so I'm looking for a more supportive cushion. If you're just needing it for out and about it's fab but if you're gonna be using it all day at home too them maybe not. 

Also you can get mobility scooters and powerchairs through the motability scheme if you get enhanced mobility on PIP 

Hope123

Hi @DayDreamBeliever thank you, that's really helpful to know.  I've heard similar of our wheelchair service only supplying transit chairs, which certainly doesn't help with independence, and unless you have someone to push you around would mean being housebound at other times.  I'm having a care assessment soon so will see whether anything or nothing comes of that, but in the meantime have ordered a reconditioned folding boot scooter with pneumatic tyres & up/down armrests.  I hope you have a diagnosis soon for the neuromuscular side of things - I'm wondering whether covid has triggered something systemic for me too & am waiting on a couple of appointments - it's certainly strange being in a waiting phase isn't it? - I hope you have helpful & caring medical staff along your journey.  I'm waiting to see what unfolds & keeping the motability as a reserve option for now in case I need something else in future.  Very good to hear that the lith-tech smartchair-1 has been so helpful, phew! x

Tibik

The usual criteria for a power chair supplied by wheelchair services is that you can use it indoors- this usually means your home, but you can stretch it to include a workplace. 

The cheapest thing- measure yourself (width of hips) and look for used chairs online. Most of them are very, very reasonable. You can take them to a wheelchair repair shop for a go thru, and you may need to replace batteries.  My first chair was off ebay- it was £300 for a chair that would cost £8000 new, and all I needed to do was replace the batteries. (£200). I knew what width seat I needed, then I asked wheelchair services to supply a Jay Balance cushion to protect my tush. 

Now, since I have used a powerchair since 2007, wheelchair services replaced my previous chair with a new powerchair. They didn't even ask.

Do you go anywhere else? Work? Activities? 

If you need some advice, you could ask your GP to refer you to wheelchair services... they will measure you up. 

Also, you can approach your council to see if you are eligible for a Disability Facilities Grant (DFG) to make your home more accessible. The Council can assess you and see. 

DayDreamBeliever

Hope123 said:

Hi @DayDreamBeliever thank you, that's really helpful to know.  I've heard similar of our wheelchair service only supplying transit chairs, which certainly doesn't help with independence, and unless you have someone to push you around would mean being housebound at other times.  I'm having a care assessment soon so will see whether anything or nothing comes of that, but in the meantime have ordered a reconditioned folding boot scooter with pneumatic tyres & up/down armrests.  I hope you have a diagnosis soon for the neuromuscular side of things - I'm wondering whether covid has triggered something systemic for me too & am waiting on a couple of appointments - it's certainly strange being in a waiting phase isn't it? - I hope you have helpful & caring medical staff along your journey.  I'm waiting to see what unfolds & keeping the motability as a reserve option for now in case I need something else in future.  Very good to hear that the lith-tech smartchair-1 has been so helpful, phew! x

Ohh I hope the scooter serves you well and can give you some relief and a bit more freedom to get out and about again. It's awful feeling trapped due to low mobility when you don't have the right aids. 

Thank you so much! Wishing you all the best in your diagnostic journey too. It's so hard when you don't know exactly what's wrong. 

Hope123

Sorry I can't find a 'reply' button but thank you for your replies.  @Tibik that's a very clever way of going about things - I'm so pleased that you got such a bargain of a wheelchair and have since had replacements without difficulty - just brilliant!  I'm not well enough to work at the moment (but would love to); I have one group which I attend and in future would like to go back to another I used to do.  Our house is small & cramped and it does worry me that it would be very difficult to get around with wheels, 'though for now I manage around the house ('though getting to the bottom of the garden is a challenge).  I'm having a care assessment later this week so will see if they're able to help with anything (or not, we'll see). 

DayDreamBeliever

@Hope123 I hope the care assessment goes well and you get some aids to help you. When I got an assessment they gave me lots of things to help around the house and they've been super helpful. Rails and grab bars in the bathroom and my front door, another rail on my stairs, a zimmer frame looking trolley so I can bring drinks/food from the kitchen to the living room from the kitchen if I'm home alone. They were brilliant. I hope your local team is just as good! 

Hope123

Thank you!