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  • (dramatic music)

  • - Hello lovely people.

  • I'm Jessica, a disabled YouTuber.

  • Yes, I do refer to myself in that way

  • and yes it is okay for you to do so too.

  • A disabled YouTuber who's making a series

  • about finally getting my first powered mobility aid.

  • You can watch the series so far

  • by clicking the card above or going to the link

  • in the description below.

  • In short, I've recently come to the conclusion

  • that a powered mobility aid would be a good idea for me.

  • I have these like weak, wobbly feet and hands

  • plus painful joints and chronic fatigue

  • and I love going to new places but I find it really hard

  • when I can't actually move around very easily.

  • I look lovely standing up, I mean see my Instagram.

  • (bell dings)

  • I just can't do it for very long and I can't get very far.

  • I spent most of my time in this series

  • kind of wobbling.

  • Pun now intended, wobbling between a mobility scooter

  • and a power chair.

  • I want something that I can use easily inside my house

  • but I also want something I can use in pavements,

  • maybe even off road.

  • In other words, I wanted a unicorn.

  • Don't tell me unicorns can't live inside a house,

  • they're unicorns, they can grow and shrink at will.

  • As a lot viewers noticed and mentioned in the comments,

  • both here and on Twitter,

  • usually people make these choices

  • with the help of an occupational therapist.

  • Occupational therapy being the use of assessment

  • and intervention to develop, recover, or maintain activities

  • considered meaningful to those with bodies

  • that are a little different to the default.

  • I have quite complex needs and an ongoing health condition

  • that is doing its own thing most of the time.

  • I know I talked about this in my last video

  • called I Was Misdiagnosed

  • and I will also put that in the card above

  • and thank you so much for the amazing comments,

  • but I've been having a bit of a difficult time

  • accessing things like occupational therapy or physiotherapy

  • because you have to go through your doctor

  • and I was told in the past that those services

  • aren't available to me

  • in terms of the like day-to-day living things I need

  • but only when I actually injure myself,

  • which sure it's pretty often

  • but the wait list is six months.

  • So I decided to figure it out by myself

  • whether power chair or mobility scooter

  • would be the best option for me

  • by renting one of each for a week, then that makes sense.

  • Except that I then got freaked out

  • by how medicalized the first power chair I rented was

  • so then I only used it once

  • and then I hired another one

  • for the event that I had to go to

  • because apparently my medical drama isn't going anywhere

  • and it even overrides my incredibly stingy side

  • which balked at the idea

  • of having to spend another 350 pounds.

  • Yes, I know.

  • They're aware they have a captured market.

  • Which did I choose?

  • Well oh well, it really did turn out rainbows in the end

  • and you'll just have to keep watching to find out.

  • (bell dings)

  • Even though I made my journey

  • without the help of an occupational therapist

  • I didn't want you to miss out on the important info

  • so with the help of Twitter

  • I connected with an expert online.

  • Jo Southall is an OT who through an online business

  • offers a range of services and is an expert

  • in complex long-term conditions.

  • I hired her for half an hour's chat

  • in order to get some professional answers for us all.

  • So I had absolutely no idea that it was possible

  • to talk to an occupational therapist over a video call.

  • I actually had no idea

  • you could even privately see an occupational therapist.

  • - So probably the reason why you weren't aware

  • it was available via video call

  • is because to the best of my knowledge,

  • I'm the only one in the UK doing it.

  • I think there's one in America and one in South Africa.

  • Some of us will offer things like this if you request it

  • but it's not standard service to offer yet.

  • I'm hoping it will be.

  • I spend quite a lot of time at conferences

  • trying to convince people to do things this way

  • because it's better, as far as I'm concerned.

  • - [Jessica] It's the future.

  • - It is, absolutely.

  • - As I mentioned earlier,

  • I think a large part of my struggle to receive help

  • is because I have very complex needs

  • and from my experience it feels like people with one problem

  • may have a doctor that knows which clinics

  • they then need to be referred to

  • whilst I've spent my life with a nerve doctor

  • saying it's a tissue problem

  • and a tissue doctor saying it's a nerve problem.

  • Obviously that isn't everyone's experience

  • but there are a lot of people with complex needs

  • who feel like they kind of fall through the gaps.

  • So my experience with occupational therapy in the past

  • has always been like an accident that I've had.

  • I've not been able to just receive day-to-day help.

  • - That's probably the reason why I'm doing what I'm doing

  • because there is a massive kind of gap

  • for people in general.

  • So I fall into that bracket as well

  • where I've got a lot of chronic stuff

  • that I was born with that got progressively worse

  • or progressively more complicated.

  • There wasn't really a service that fit my needs

  • unless there was an acute element to it.

  • So I could have a genetic disorder

  • but I also had to fall down the stairs.

  • Social services is available for a lot of people

  • and they'll send OTs to come out and visit you

  • for long-term health conditions but again

  • that tends to be focused on the very, very basics of life

  • like can you get up and dressed,

  • can you get in and out of your house,

  • and can you make a sandwich and a cup of tea?

  • And the budget for anything more fulfilling

  • than the absolutely basics

  • tends to be a little bit limited.

  • - With that in mind and for those of you

  • who are watching this video because maybe you're searching

  • for your own mobility aid,

  • here's how you can find a local OT

  • and what the process is like.

  • Also, you can go online, who knew?

  • Not me.

  • Where would you advise that people go

  • or the keywords that they should be searching

  • to find an occupational therapist?

  • - So I generally always recommend

  • that if a person can get NHS help they do

  • simply because I'm aware that a lot of people

  • have a lot of ongoing health needs.

  • NHS wheelchair services is available.

  • Referral process varies from sort of county to county.

  • There are kind of groups of people

  • that just don't meet the criteria

  • for wheelchair services that do then end up

  • either seeking support for other wheelchair users online

  • or coming to somebody like me.

  • A lot of the kind of big wheelchair suppliers

  • around the world,

  • their staff is primarily made up of wheelchair users

  • and it is kind of worth looking into places like this,

  • just mobility showrooms

  • and just seeing if you can find some of the bigger places.

  • Definitely worth kind of talking to these guys

  • to see if you actually need somebody like me.

  • - The funny thing is I originally thought

  • that Jo might be able to help me choose

  • between the power chair that I really liked

  • and the mobility scooter I really liked.

  • The wheelchair I like folds, it's pretty light,

  • it's small enough to go through normal door frames,

  • I can use it in doors, in a tube station, on the train.

  • The power chair I wanted, on the other hand,

  • is great for trips to the park or the local shops.

  • It can easily handle pavements, I wasn't gonna fall off it,

  • I could even put Claudia on it with me if I wanted

  • and it's really gorgeous.

  • So I scheduled the call with Jo

  • but then GreenPower said they'd send me a mobility scooter.

  • I too am shocked.

  • Hello, so I'm about to go out for the very first time

  • on my new mobility scooter and I'm very excited

  • but I'm also slightly nervous

  • because as Claudia pointed out

  • it just looks like a regular motor scooter

  • 'cause it's gorgeous and I'm really pleased about that

  • but it was potentially a bad thing

  • because maybe people will say hey,

  • you can't bring this in the park

  • or you're not allowed this on the pavement,

  • even though you are allowed

  • to actually drive it on the pavement.

  • I haven't driven on a road in about 10 years.

  • Thanks, she's been doing some great support this morning

  • by which I mean she's been like yeah,

  • you should probably be worried that people won't allow it

  • and I'm like ah.

  • We're gonna have a great day out to the park.

  • (upbeat music)

  • The Unique500 electric mobility scooter from GreenPower

  • has a beautiful vintage design

  • and it comes in a range of colors

  • and unfortunately the white was not available to send to me

  • I imagine because it's understandably probably very popular.

  • It has an amazingly long running range

  • of 45 miles per full charge.

  • Thank goodness, because Claudia

  • definitely does not want to push that one up a hill.

  • It can easily reach the max allowed speed

  • for mobility scooters

  • and it doesn't feel like it's killing itself to get there.

  • Have I mentioned that it's beautiful.

  • (chimes tinkle)

  • This retro goddess has both front and rear suspension

  • so your little bottom won't feel a thing

  • as you go over bumps, unlike some other models.

  • The headlights are adorable.

  • The rear view mirrors are adorable.

  • The padded seat is comfortable.

  • It has front and back hand brakes.

  • The only issue I found

  • was not everyone else seemed to realize

  • it was a mobility scooter and therefore allowed in the park.

  • We're back from the park

  • and we almost didn't film anything whilst we were there

  • because there were lots and lots of people at the park.

  • - It'd been raining all weekend

  • and today's the first morning where it was like not raining

  • and then everyone kept stopping you and be like,

  • oh what is that?

  • Is that a motor bike?

  • Is that a, they're like ooh.

  • - And just also staring quite weirdly.

  • - Feeling like they could touch it.

  • It was a bit weird, wasn't it?

  • - A lot of the kind of older women

  • were glaring at me quite a lot I felt like

  • because they would be like,

  • uh why are you driving a motorbike in the park?

  • It's definitely not allowed.

  • - Well even though they thought

  • you were driving a motorbike in the park

  • they thought that's not allowed

  • or they thought you were on a mobility scooter

  • but you obviously don't need it

  • so you're just trying to like get a cool one.

  • - Maybe they thought that were just there

  • to do a photo shoot.

  • - Then I think they thought

  • why have they got their two dogs with them

  • if they're doing a photo shoot?

  • Is there room to say that if it was,

  • if you were like an old lady.

  • - Basically me but in 50 years' time.

  • - Then I think that would look cool.

  • Look at that cute old lady on that really cool--

  • - Reclaiming her youth, look at her go.

  • - Yeah, but because you're already like

  • a cool, trendy, attractive young woman

  • to be on such a like attractive, young,

  • trendy-looking mobility scooter as well, I dunno.

  • It's like a weird message.

  • People don't know how to read it.

  • Like you said,

  • I think people were a bit intimidated by you rather than.

  • - I mean normally when I went to the park before

  • in the mobility scooter that we rented

  • and in the chair people are quite nice.

  • Like they smiled a lot and this time I did not feel that.

  • Now, the going outside part is taken care of.

  • I actually had therefore budget

  • to buy a really good power chair.

  • I know, I'm stunned too.

  • So I started to look for a chair that I could use inside

  • and I went back through all of the comments

  • on both Instagram and the videos so far and I found

  • not at all scared, okay.

  • (clicks button) Okay, okay yeah, it's done.

  • The PW-99UL, I still think

  • they could've come up with another name,

  • is listed for sale on a number of websites

  • including Wheelchair88.com, the Malaysian company

  • who actually make the chair, and yes

  • I too like the poetry of it being from Malaysia.

  • My wife is half Malaysian if you didn't know.

  • But I had never heard of the company before

  • and I felt a little iffy about it

  • so I decided to buy through Amazon

  • whose return service I've used before

  • and who advertised in British pounds.

  • I was advised that the delivery would take a month

  • and fully expected to not hear back for quite a while

  • but whoa, I pressed Buy in the evening

  • and at 9:00 AM the next morning my phone rang

  • with someone from Wheelchair88 confirming my order

  • and that I was eligible for VAT relief.

  • In the UK, disabled people don't need to pay VAT

  • on medical-related equipment.

  • The equipment itself is still really expensive.

  • There's a heavy element of gate keeping

  • as not everyone has a piece of paper

  • that proves they're in need and I genuinely have no idea

  • why VAT is put on it in the first place

  • because who buys a wheelchair for fun?

  • But it's generally a good thing, so.

  • After the call an email was sent

  • with a form that asked for my measurements,

  • which hand I used, and the plug socket that I would need

  • and that was that until 12 hours later

  • when Amazon informed me that my parcel had shipped.

  • I know, I too was shaken.

  • A week later a delivery man hefted a very large parcel

  • into my hallway and,

  • but the chair has actually arrived.

  • I mean when did I order this?

  • 12 days ago.

  • Here already and now we're gonna open it up

  • and I'm very, very excited.

  • I'm also a little bit nervous.

  • (whimsical music)

  • (laughing)

  • You can't just stab things!

  • (whimsical music)

  • The speed appears to be on five so that's,

  • all right it's on speed one.

  • Hello. (whimsical music)

  • I am really happy with the chair.

  • It handles bumps and different surfaces,

  • even seemingly steep inclines with ease.

  • It didn't take too long after opening the package

  • to actually work out the controls

  • as they're really intuitive, which I like so much better

  • than using both hands to steer

  • and they're not kidding about you being able to fold it

  • in less than a minute.

  • I have now got the knack.

  • I am so, so excited to try my first trip to London

  • with the power chair.

  • It's gonna make traveling so much easier.

  • I will film the whole ride on my Instagram stories

  • and I'm also gonna put it in this month's Weekenders video

  • which is a special behind-the-scenes video

  • that the members of my Kellgren-Fozard Club get every month

  • and if you would like to watch that

  • and all of the other secret videos I've put out

  • over the last year then click the Join button below.

  • It was only with help from the Kellgren-Fozard Club

  • that I was able to purchase this chair,

  • which is amazingly wonderful of them and I am so grateful.

  • The only drawback is black, but.

  • But I know a few of you have leads

  • on really good places that I can get her a makeover

  • so expect an episode of pimp my chair in the new year.

  • Please do leave any suggestions

  • on what you think my chair should look like

  • in the comments below.

  • I'm intrigued as to what you think.

  • Yay, the end of the video!

  • (whimsical music)

  • Only kidding.

  • Remember how I mentioned

  • that electric tricycles were amazing

  • and could work as a mobility aid and I really want one?

  • Well. (harp string being plucked)

  • Oh yes, Jorvik were listening.

  • They sent me one and I am in love.

  • I just went to the park.

  • I cycled to the park all by myself from our house

  • for the first time ever.

  • I've never done that and it was fine on our road

  • to start with because there are no cars on our road

  • but then I got into a bigger road and I was like oh,

  • there's a bus.

  • I don't know whether you did that cycling class

  • in primary school when they tell you how to cycle on a road

  • but I didn't because I can't ride a bike.

  • I was a bit scared and I went on the pavement

  • but people didn't seem to mind.

  • They were very sweet.

  • I think because it looked so nice

  • they just stopped and stared at it anyway,

  • which is quite good.

  • I'm really proud of myself.

  • I feel quite accomplished.

  • It's the first time I've ever ridden a bike

  • and not fallen off or crashed into something

  • or in some way injured myself.

  • It feels really good.

  • Look at me, look at me go.

  • Oh, and other exciting things about it right.

  • So I didn't realize this.

  • When you turn it onto electric

  • you can make it move by twiddling the handle.

  • You don't need to move your legs at all.

  • So at one point I got a bit stuck

  • 'cause I had the back legs in a dip

  • and I wasn't strong enough to use my other legs

  • to power it out.

  • I just turned on the power, twizzled the handle,

  • and the bike just got out of the hole.

  • I didn't even have to use my legs.

  • It's amazing, let's go.

  • (pleasant music)

  • The great thing about this bike

  • is that I just don't feel like I'm going to fall off.

  • I feel really safe.

  • I've never felt that on a bike before for obvious reasons.

  • (upbeat music)

  • I love this tricycle.

  • I can't ride a bike because my balance is terrible

  • and the bit of my brain

  • that's meant to like retain muscle memory just doesn't work

  • but this bike was really easy to use,

  • even with just one hand and I never felt in danger

  • and lots of people gave me compliments.

  • There are only two minuses in that sometimes

  • when you pull on the brake

  • you kind of accidentally rev the bike at the same time

  • but that only applies when the electric bit is on

  • and the second I have no idea how gears work.

  • Claudia has explained this to me three times

  • about why you go up or you go down gears

  • but it will not stick in my brain

  • and if you have a really useful mnemonic

  • for remembering gears

  • then please leave it in the comments below because I'm lost.

  • Obviously the tricycle only works for me

  • when both my legs are working.

  • So since my condition is very variable,

  • yeah that's my life like this, exactly this,

  • I am very happy to have three aids

  • for the various degrees of my body not working,

  • not working to the general extent that I have low energy,

  • injured to the extent that I can't walk far or well,

  • and then no I'm going nowhere unassisted.

  • Obviously, it's not going to be practical or affordable

  • for most people to have more than one powered aid.

  • It's not even affordable for me but I'm really grateful

  • that I don't have to struggle along anymore

  • and that I will have greater independence

  • and that I can go for country bike rides with my wife

  • without crashing into a tree.

  • I'm really, really looking forward to it.

  • Oh gosh, whoa.

  • It's that bit when Jessica gets emotional.

  • Reign it in.

  • (exhales) I am very thankful to GreenPower, Jorvik,

  • and the Kellgren-Fozard Club

  • for truly making this possible for me

  • and the takeaway lesson here

  • is that if you can't find a unicorn

  • get a stable of horses.

  • That's obviously not the takeaway lesson here.

  • Make of it what you will.

  • I really hope that through my very stumbling journey

  • you've managed to find some information

  • that's useful for your own path

  • or maybe you've just learned something about a topic

  • that you hadn't considered before.

  • Thank you so much for watching

  • and I will see you in my next video.

  • Only one left before Blogmas. (jingle bells ring)

  • (gives a smooch)

  • (whimsical music)

(dramatic music)

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我找到了我的獨角獸// 移動輔助設備4 [CC] (I found my unicorn! // Mobility Aids 4 [CC])

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    林宜悉 發佈於 2021 年 01 月 14 日
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