Is the Veloped right for those with SCA?

[WobblyWoman57]

Hi all,

Just wondering if the Trionic Veloped is right for people with SCA whose main concern is stability due to severe balance issues?

I was diagnosed decades ago with SCA15 and while for many many years I have been largely ignored by the medical profession because once diagnosed there was very little they could do and the rarity of the SCA meant very little understanding, I have been self managing.

The falls are nasty, right! I mean double dislocated elbow, broken teeth, smashed face, etc, etc. Plus, living in such an isolated place, means I can’t get anywhere easily. I have leased Motability cars for years now and hubby is great at keeping me safe when out and about but the sticks/crutches just don’t cut it anymore and I would like a rollator to enable me to regain movement - currently have atrophy in legs - but be stable enough for me.

The trouble is that now I finally have a physio who is willing to tackle the issues, she keeps telling me that due to procurement rules the rollators that might suit me are off limits. So I want to get a grant but I don’t want to waste anyone’s money so need to feel as certain as I can be that my choice is appropriate. I think the Veloped is right for me. I have dogs, live on Dartmoor and love being outside (not been able for so long). Any ideas if I’m on the right track (excuse the pun) would be appreciated.

Btw I have severe oscillopsia and lots of times have trouble seeing much so I often have to take breaks from screens. Therefore, if I seem like I haven’t bothered reading or engaging with any replies, I apologise in advance - I would hate to upset anyone!

Thanks

[wobblybee]

🙂 I was considering a Trionic Rollator…so I joined ‘Trionic Veloped and Walker User Group’…on Facebook.

🤔 It was useful reading other peoples comments..and I even found someone near me who had one..and offered to let me try it before ordering from Sweden.

Join the group..Velopeds quite often come up for sale.

[WobblyWoman57 in reply to wobblybee]

Thanks wobbly bee! I will check it out. Always good to get as many views as possible.

[Velocepede]

HelloI have had a trionic veloped for about 3 years now . For me it has opened up my world again as I can go for walks in the open countryside. I live between Yorkshire dales and North York Moors . My walker (Vera) easily copes with rough woodland or moorland tracks and fields . It is also good for bouncing up kerbs in town. Downside is it is really too bulky in shops or places where pavements are really narrow so I have a much cheaper basic walker to use when all terrain walker is not appropriate.

I was diagnosed with Cerebellar Ataxia 9 years ago and gave up using poles because of increase in falls. I keep a pole in car as it is useful to get from car to shopping trolleys.

I seem to remember when I got my trionic from Sweden you could return it for free if not suitable.

As wobblybee says you may be able to get a second hand one through the user group.

Good luck and hope you are enjoying walks on Dartmoor with your dogs again soon.

[WobblyWoman57]

Thanks very much for your reply Velocepede - it’s really heartening to hear that your Vera can cope so admirably with your environment. Dartmoor is very similar terrain, I think.

I was getting so despondent about not being able to find a walking aid that would truly be able to help me properly off road, as when you drill down to the ‘all terrain’ models on the market, including those pushed at me by medical professionals, they are really only suitable for gravel driveways or a lawn. I was actually told recently, over the phone, by an OT at one of these mobility centres that supply such things, that it wouldn’t be possible to provide a rollator for my environment and I should give up on the idea of walking anywhere but places with pavements.

There are several grants available if there’s an accompanying letter from a medical professional. My OT has said she will do that for me so I’m going to go for it now that I feel confident that a veloped is the right thing.

I’m so happy to have found this group. It’s been decades in the wilderness and we all know there are really only 2 responses that other people have when faced with this condition : it’s either, ‘What the heck is that, never heard of it and don’t have time to learn about something so obscure’, or, ‘Well, I don’t know what that is but give me a minute and I’ll soon find out at which point I will be confident in telling you what you need, should be doing and what is going to happen next.’ One of those responses is usually from family/friends and the other is invariably from people you’d expect more from 😂

[Crisfromshipdham]

Hello, I had a trionic veloped for about 15/16 years. It was the most liberating experience after so many falls. It opened up a whole new world of country walks,woods etc etc. My dog loved it too and sat in the basket adniring the view. Regretably I sold it last year as I became more diabled and now have awheelchair. The people in Sweden are really helpful. They are expensive but worth every penny. Enjoy Dartmoor again!

[WobblyWoman57 in reply to Crisfromshipdham]

Hello Crisfromshipdman,

Wow, 15/16 years! They have longevity then - I know they have great warranty but it’s great they are still going strong afterwards. I’m very sorry to hear you have moved to a wheelchair. It’s tough getting your head around decline in mobility, isn’t it? Thank you for your insights and if I get enough courage once back out on Dartmoor I’ll post a photo of my progress!

[Crisfromshipdham in reply to WobblyWoman57]

There are 4 wheeled trionic velopeds now too. I also see a persnal trainer once a week and exercise daily which has increased my mobility. Looking forward to seeing you on Dartmoor.

[peterallison]

I have had some physio experience, but due to my nature have either not bothered to follow it early on on my Ataxia SCA6 journey through, or my legs NOW will not let me do the exercises

[WobblyWoman57 in reply to peterallison]

I know what you mean about the physio. It’s often difficult to engage with gusto especially when so much is going on with your body. I have never been lucky enough to be assigned a neuro physio and instead, been given exercises that Beth Tweddle would struggle with. I used to competitively swim when I was a teenager and after decades I have started going to my local pool. I like to think of myself as a mermaid - on land, a complete disaster, but when in the water, grace and far less splashing than you might think, is the order of the day.

Perhaps swimming might be a way to keep moving? I know water and not moving in it is a recipe for disaster but disabled swimming is a thing now. I recently discovered it when I finally found a pool that could offer extra support etc. I guess it’s like everything else though, depends on the area.

[Ustrasana]

Hello, I bought a Trionic Veloped in June as I was going to a 4 day music festival in August. I can honestly say it is the best purchase I have ever made.

The previous year I used an ordinary rollator at a music festival and didn't feel comfortable with it. But the Veloped gave me so much more freedom over uneven ground and at night.

Several people at the festival asked me about the Veloped, either for themselves or people they know. I told them how much I was impressed with it.

In 2025 I will be attending 3 four day music festivals, I feel that confident with it.

I have also used it at several National Trust properties, Calke Abbey being one of them. Calke Abbey grounds having several steep paths. It was quite a work out at the end of the day but without the Veloped I would never have been there.

It's expensive but well worth it. It has given me the freedom that over the past few years I haven't had having been diagnosed with Cerebellar Ataxia 6 years ago.

[WobblyWoman57 in reply to Ustrasana]

It’s amazingly fab to learn how the Veloped is giving you freedom to enjoy the festival scene and instilling such confidence. And I have always wanted to explore the National Trust properties but have shied away from going inside because of the risk of falling into the treasures. Even the grounds have been too daunting but to hear of your experiences with it gives me confidence that the Veloped is the right choice. I’m interested in the Tour model because I read a reviewer who said the seat is bigger (slightly) and more comfortable for longer sitting. I hope you have an absolutely fantastic time at your festivals next year and the weather is kind!

[Ustrasana in reply to WobblyWoman57]

Thanks. I have the Trek model with 14in wheels, knowing I would use it to go for country walks and festivals. Certainly need a cushion for music festivals and for sitting for long periods of time.

I have only been inside one National Trust property so far, was ok as you can make it more narrow to fit through doorways. Coped well with the cobbled floors too. Didn't break anything either, well not that I know of anyway.

Hope you get a Veloped and it helps you enormously, which I'm sure it will.

[CrazyHarry]

Physiotherapy

Hi, sorry I'm answering on behalf of Keith, his condition has changed over the last year. I take Keith for Physio every week. He has Functional Electronic Stimulation and Acupuncture. Keith used to be able to walk with the aid of a rollator (small weighted one indoors and Trionic for outside). After too many falls he now uses a wheelchair but the treatment with the Physio is keeping his legs strong enough to stand and with me helping I can walk him to the bathroom so he can be as independent as possible. Keith has Parkinson's as well as SCA14 and was diagnosed with Lewy body dementia a year ago. I will just add that I bought Keith a rollator to use indoors and I added wrist weights to the lower structure - this made the rollator more stable for him to use as he felt it was too flimsy after using the Trionic. Best wishes Jan

[WobblyWoman57]

Sorry for the delay in responding. I had dental work to help with broken teeth after falling. I had to wait 5 years for that and I got myself in a tiz about it. Can’t eat anything but soup but hey, it’s better than agony without end!

I’m very sorry to hear about Keith’s complex challenges, particularly over this last year and it’s testament to his character that he’s showing a commitment to keeping as much independence as possible. It must be really tough.

I find the addition of weight to the rollator both intriguing and appealing because conventional wisdom from “experts” who repeatedly point out that because the NHS has no money it’s imperative to make a square peg fit into a round hole, and the lighter the rollator, the better it must be. To me this is counterintuitive. It just makes sense to have more heft in something that I need for support. Thanks for the tip! And I hope Keith continues being as independent as possible for as long as possible. Enjoy the festive season.