HIBM / DMRV / GNE Myopathy

When I was 20 years old I feel some abnormal change with my legs.

And when I was 22 years old I was diagnosed with distal myopathy.

When I was 26 years old

I began to use wheelchair because I couldn't walk as usual.

And I had baby, so I and my husband and my baby go outside together.

My name is Josh Grisdale and I'm from Canada,

near Toronto originally, and I've lived in Japan for about eight years now.

I have what's called cerebral palsy and it means that i had brain damage when I was a kid.

It might have been a high fever I had when I was about six weeks old.

So after that it effected my arms and my legs so i can't move them as I intend to.

And communication between my brain and my body is the problem.

My name is Minekazu Tsuchiya.

I'm an office manager at STEP Edogawa.

I was in a motor bike accident 28 years ago.

Since then I lived with my parents and went to the hospital.

I moved to Tokyo 12 years ago.

Medical care and helper, Japanese government pay for us and

we pay around 10 percent, it depends on their salary

To add to what Yuriko is saying, there's a cap on the monthly amount you'd pay.

Additionally, if you're low income, you'd pay less than someone with a higher one

I say a benefit for me in the way that the system is set up

is that it's not necessarily distributed by the country,

as much as the through the city.

So if you're living in a city and you're registered with the city

and you pay your city taxes then you're eligible to receive the city services.

And so that's who's in charge of sort of dispensing the helper time.

And some of those accessibility services and stuff so...

Even though I'm not a Japanese citizen I'm still able to

receive those things as a citizen, or, a resident of my city.

So it's more residence then nationality.

And it can change depending on which city you live in as well.

So if i move to a different city then I'd obviously fall under that city's situation.

So that could change what services i receive and stuff so...

We get assistant services for people with disabilities.

It is different from the Long-term Care Insurance for the elderly.

Part of the assistant service is a home helper service where a helper visits you at home.

There are helper services that aid in going out or going to a hospital and so on, which are subsidized by the government.

The hours you receive depend on how severe your disability is.

Depending on how bad your disability is and your condition, your benefits will change.

It's really complicated to explain, but to easily say it, there are different levels.

I get home care service for people with severe disabilities, which is pretty much the maximum support you can get.

In order to get my benefits I applied to the Edogawa ward (city) office.

Then the Edogawa ward office reviewed my application and decided how much benefits I would get.

I get a 302 hours of home helper service a month.

My name is Shoichi Adachi. I'm a helper.

While the disabled people I met could do many things on their own,

they all required aid from helpers.

I shouldn't open your closet, should I? Right, I won't!

Ah, could you microwave it for about 1 minute, please?

Thank you so much.

Ahhh, Sooo good!

I'm really careful when I work with a person whose values aren't the same as mine.

I try to think as if I were that person, putting my values aside.

I'm here to support my client's life, so that's what I focus on.

I always remember I'm just here to help my client.

By myself I can type and I can handle a ride in my wheelchair

and brush my teeth with an electric toothbrush.

Other activities I cannot do by myself.

When I travel I (go) with (my) husband.

But in my house I ask some helper

to help wash dishes or laundry or clean my house.

The three main types of help that i saw provided

were for physical needs like assistance going to the washroom or getting dressed.

Daily life needs like cooking food and cleaning.

And social well-being needs

like traveling outside of the home to interact with others and the world.

I asked how the help was provided and it turns out it depends on the individual

and the company providing the support.

Since every individual's needs differed so did the support they received.

I plan my helper tasks on a weekly basis.

My helper comes in the morning to help me get out of bed, go to the bathroom, and change my clothes.

Then there's lunch time, dinner time,

cleaning up, and putting me in bed.

I divide the day into morning, lunch, and dinner.

On days that I take a bath, I'll ask a helper to stay longer.

On weekends, I'm off work , so I like to go out.

I will plan my helpers' shifts 1 month in advance.

I am able to lead a life thanks to my helpers, though

there are limits on what they can do to help.

It's not like I can ask them to do anything I want.

Regarding hours of assistance,

we have been asking Edogawa ward office for so many years.

The more severe your disabilities are, the more assistance hours you need.

However, Edogawa ward office can't give us that many hours.

It's a long term problem that we have to figure out.

Even with severe disabilities, you can't get assistant services 24-7.

We'd like to have more help.

Going into making the documentary I didn't quite realize the amount of care needed.

So I asked Josh how it felt to have a helper with him for many hours of the day.

Having a helper helps me do a lot of things obviously.

But at the same time it's nice to have personal time.

And you know, not necessarily always having someone beside you.

But the problem is also because of there's a lot of personal care things I can't do on my own.

So I am limited by how long I can be on my own.

And so yeah it can be kind of a fifth wheel

so it can be difficult to go out with your personal friends.

and have another person around sometimes.

But at the same time, you know, if I need to use the washroom,

I need to have that person somewhere nearby.

So sometimes you get people to come with you and just wait somewhere.

But some companies that dispatch the helpers

they're worried that they might get in trouble from the city if

the person's not nearby to help you.

So they don't like you to tell them to wait somewhere completely far off.

So it can be a bit difficult for your personal life sometimes.

As Yuriko said her husband acts as her helper

when she wants to go out and do everyday activities like shopping.

She finds department stores are very wheelchair accessible.

This is because some of the small and older family-run stores,

that were built many years ago,

don't always have the same space to accommodate wheelchairs.

What should we get? Tomatoes?

Tomatoes and cucumbers.

I want more!

Hmm... what should we get?

What about the last one in this row? Tuna. The last one in the middle.

This is real.

As you can see in department stores, which often have supermarkets,

there's plenty of space for her wheelchair.

And yeah, that's the Ghostbusters theme song!

It's over there in the middle section.

What's also nice about Japanese department stores

is they often have a section of ready-to-go food which is found on the lower floor.

Can you get this, please? Yes, one please.

While some older style buildings simply don't have the space,

some do have little ramps like this which help bridge the gap.

It was 28 years ago when I was in the accident,

and back then I didn't know anything about the system at all.

Because I was living with parents at home and

living in a care home center, I didn't know about the system.

But since I came to Tokyo and started to live on my own

I stared to get interested in learning the care system.

If I think about it,

the system has been a lot changed.

The biggest change is that you can live on your own

with the home help

and assistant services.

Talking about our office's helper service,

ours is very different from the ones at other places.

We don't call it help. We call it support.

We respect the person who has the disability and how he/she wants to live life

and focus on what kind of support

he/she needs.

That is our main focus.

I feel that other helper service offices

don't really focus on what disabled people want.

So they help their clients with what they think they need, not what the client says they want.

The big difference is we understand their needs (because we're disabled too).

That's the biggest difference.

Money?

We provide a service, so

we charge our clients.

We're not doing this to making money though.

We want to support people with disabilities so that they can live on their own.

That is our purpose.

Josh lives in a home specially adapted for wheelchairs.

Actually, the whole apartment is designed to be barrier-free.

Japanese houses, but not only houses,

also a lot of buildings and businesses have a genkan

I push a button here.

So did you have to get that specially installed?

Yeah, so the city, paid for I think about ninety percent of it.

So in most houses in Japan, and you've probably seen them in Greg's house,

there's a genkan at the front which is a step that sort of separates the outside

from the inside of the house and what's clean what's not clean

so people will take off their slippers at that point.

But obviously it's not very accessible for people in wheelchairs.

So in my apartment building what they've done is made the genkan go away.

And so instead of having an actual genkan there's just sort of a

separator in the floor type so that you can say okay this is outside and this is inside.

So people take off their shoes there

so it's one of the adaptions they've made for my apartment.

So we've already seen the genkan and automatic door the front.

There's a couple other things that are sort of unique to my apartment.

The floor is a bit flatter than a lot of other places.

There used to be a door here but I had taken out.

It's a sliding door.

That's another thing as well, a lot of places in Japan they have doors that open by pulling,

but that's obviously difficult to do in a wheelchair.

So a lot of places in my apartment building , which is designed for people with disabilities,

have sliding doors instead.

Now I never ever cook, but if I ever was so inclined to,

Underneath the sink and the gas range they've cut everything away,

so I could pull in with the wheelchair, theoretically.

But I've, ah, I have it filled up with garbage and beer instead so...

And if we head over here...

(this) is the washroom area.

The bathroom is a bit bigger than normal, and also it's got the sliding doors on it.

Pull right up and use the toothbrush and I can get at the sink and everything .

And in the bathtub here, they've added these things called a sunoko.

Which sort of looks like a fence laid down on its side.

And the bathtub actually goes down about, maybe, five centimeters or so.

It would normally go in but they've built up these sunoko

so that I could drive right in with my wheelchair.

They've also got a number of different handles on stuff on the inside as well.

And then moving back here...

- This is Adachi-san, right? - Yeah this is my helper Adachi-san

And over here I've got my bed and

it's sort of like a hospital bed so you can lift up the feet and stuff like that .

So the city help pay for the cost, part of the cost of my bed.

On the side of the bed in that sort of tangle of cords,

is the interphone and normally that is sort of on the side of the wall somewhere.

But because if I'm in bed, I can't open the door if it's on the wall

and so I was able to put the interphone next to my bed so

whenever somebody comes in the morning to help me get out of bed then I can open the door.

And then once when my dad was visiting

he went to the local hardware store

and he bought some wood and he made a fence for me, ah sorry,