This is helpful. I'm getting my first wheelchair (also have hEDS - but my dysautonomia is the primary reason for needing a wheelchair). My mobility and seating OT wants me to consider an uncommon bike attachment ("Cheelcare companion), while I prefer a SmartDrive. I know there can be issues with either, but the wider turn radius and having to have my hands up while operating (which can trigger migraines and dysautonomia worsening) makes any bike attachment a no go for being my primary power assist. My existing wheelchair skills are much better with a regular turn radius rather than having something in front of me - like you have to in this and other videos with your bike attachment. We don't have many trains in Canada. Here in Toronto, there's the subway and streetcars (trams), which don't need assistance staff to get on and off.
I'm so glad the video was helpful. I'm sorry - it sounds like your OT isn't listening to you. I hear you with the turning circle, it was one of the reasons a bike attachment wouldn't have worked for me a few years ago, because of the places I needed to be able to access. If you're able to, it's worth trying/considering a Smoov - very similar to a SmartDrive and they seem to be more reliable from what friends have said. X
Thanks for showing this experience. I too panic about the train taking off without Assistance has removed me from a service. Many many close calls. I’ve spoken to many staff onboard while I panic and wait and they said if were not with you onboard to know Assistance haven’t showed up and the train locks use the emergency stop button. I was concerned about doing that since they have signs threatening fines for misuse, but onboard staff have often said “well that IS an emergency” that’s reassuring as I’d stopped travelling without a PA or companion because of the near misses (usually companion will flap about and shout down the platform etc to attract attention and help- which I couldn’t) I’ve not really been out on public transport since before Covid -never mind solo adventures, but it’s a little security blanket of confidence if/when I do.
Yes, I've been told to use the emergency stop button too. Only problem is that on some trains, they're too high for me to reach. 🤦🏻♀️ We shouldn't have to think about these things - we've booked assistance AND been put on the train. There's no excuse for it. Thankfully most of my journeys are positive, but when it goes wrong, it really goes wrong. Level access trains are slowly being introduced, so hopefully some time in the future we won't have to worry.
Great video Tania! I would love a video about using a cane with Irlen Syndrome!! I use a symbol cane and would like to use a long cane to reduce visual fatigue and the effect of night blindness/photosensitivity but I worry about not being “blind” enough ❤
I use a train regularly, with my Triride. Some trains are OK, others (CROSSCOUNTRY) are impossible for me to get into the wheelchair space unless I disconnect the Triride before boarding the train, and get Assistance to wheel it on separately. It's the table that gets in the way of the handlebars. I have the same problem with phone/throttle/scanner - why can't there be a scanner on both sides? 🙄
Yes! Scanners on both sides would make such a difference to so many. That's really interesting that you've had problems with Cross Country - they were a nightmare for me when I tried to book assistance for this journey. Thankfully neither stations were Cross Country's, so I didn't have the hassle that you've had to deal with. Thank you for the heads up about their stations, its really helpful to know. Xx
I regularly use Birmingham and surrounding stations (Leamington staff are lovely 🙂). It's the trains themselves, not the actual stations that cause the problem. Not always possible, but if I can avoid a CrossCountry train I will do.
Thank you for sharing❤ I get anxiety just looking at this. You are so brave❤❤❤
Thanks! I'm just trying to live my best life. Busses are a nightmare, so train it is!
This is helpful. I'm getting my first wheelchair (also have hEDS - but my dysautonomia is the primary reason for needing a wheelchair). My mobility and seating OT wants me to consider an uncommon bike attachment ("Cheelcare companion), while I prefer a SmartDrive. I know there can be issues with either, but the wider turn radius and having to have my hands up while operating (which can trigger migraines and dysautonomia worsening) makes any bike attachment a no go for being my primary power assist.
My existing wheelchair skills are much better with a regular turn radius rather than having something in front of me - like you have to in this and other videos with your bike attachment.
We don't have many trains in Canada. Here in Toronto, there's the subway and streetcars (trams), which don't need assistance staff to get on and off.
I'm so glad the video was helpful. I'm sorry - it sounds like your OT isn't listening to you. I hear you with the turning circle, it was one of the reasons a bike attachment wouldn't have worked for me a few years ago, because of the places I needed to be able to access. If you're able to, it's worth trying/considering a Smoov - very similar to a SmartDrive and they seem to be more reliable from what friends have said. X
Thanks for showing this experience. I too panic about the train taking off without Assistance has removed me from a service. Many many close calls. I’ve spoken to many staff onboard while I panic and wait and they said if were not with you onboard to know Assistance haven’t showed up and the train locks use the emergency stop button. I was concerned about doing that since they have signs threatening fines for misuse, but onboard staff have often said “well that IS an emergency” that’s reassuring as I’d stopped travelling without a PA or companion because of the near misses (usually companion will flap about and shout down the platform etc to attract attention and help- which I couldn’t)
I’ve not really been out on public transport since before Covid -never mind solo adventures, but it’s a little security blanket of confidence if/when I do.
Yes, I've been told to use the emergency stop button too. Only problem is that on some trains, they're too high for me to reach. 🤦🏻♀️ We shouldn't have to think about these things - we've booked assistance AND been put on the train. There's no excuse for it. Thankfully most of my journeys are positive, but when it goes wrong, it really goes wrong. Level access trains are slowly being introduced, so hopefully some time in the future we won't have to worry.
Great video Tania! I would love a video about using a cane with Irlen Syndrome!! I use a symbol cane and would like to use a long cane to reduce visual fatigue and the effect of night blindness/photosensitivity but I worry about not being “blind” enough ❤
Of cause, thank you for this suggestion. I’ll see what I can do. ❤️
I use a train regularly, with my Triride. Some trains are OK, others (CROSSCOUNTRY) are impossible for me to get into the wheelchair space unless I disconnect the Triride before boarding the train, and get Assistance to wheel it on separately. It's the table that gets in the way of the handlebars.
I have the same problem with phone/throttle/scanner - why can't there be a scanner on both sides? 🙄
Yes! Scanners on both sides would make such a difference to so many. That's really interesting that you've had problems with Cross Country - they were a nightmare for me when I tried to book assistance for this journey. Thankfully neither stations were Cross Country's, so I didn't have the hassle that you've had to deal with. Thank you for the heads up about their stations, its really helpful to know. Xx
I regularly use Birmingham and surrounding stations (Leamington staff are lovely 🙂). It's the trains themselves, not the actual stations that cause the problem. Not always possible, but if I can avoid a CrossCountry train I will do.
@@TheMags03 Good to know, thank you! 💜
Cross Country are a nightmare in my powerchair as well!!
@@ecologist_to_be So frustrating - they need to do better.