(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)