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Maxim Kiselev Makes His Mark Through Dance

Twenty-nine year old Maxim Kiselev lives in in Moscow, Russia, with his beautiful fiancé, Natalia, and lives with spastic tetraplegia which mainly affects the left side of his body. Maxim is a wheelchair dancer, and does both ballroom style dancing and figure skating on ice.

He initially took up dancing at 14 years’ old as a way to try to strengthen his left side – in particular his left arm and fingers which had limited functionality at the time.

“In the beginning I was simply excited at the thought of doing something new that doctors thought could improve my quality of life,” Maxim said.

His plan was to be the standing partner of a person using a wheelchair, however his challenges with coordination and balance meant this wasn’t an easy feat, and he eventually realised that it wasn’t going to be possible.

“When my mother and coach suggested I get into a wheelchair myself, as the severity of my disability allowed me to do that, I was furious.

“I worked so hard through the years to be able to walk! Getting into a wheelchair felt like a setback. But they insisted and managed to convince me. I got into a wheelchair and was quickly pleased by my progress,” Maxim continued.

After two years of wheelchair dancing, Maxim attended a paradancing show, which featured really talented professional dancers.

“At the show I realised that there was a whole new level I could get on.

“My mother found a ballroom latin dance club and they had a coach who was willing to work with me, although he had no experience with people with disabilities in a wheelchair,” Maxim said.

A month later, Maxim was thrust into competing in the Eurasia Cup 2007. This was his first tournament, and he was a complete newbie, but he managed to place fourth in the solo category.

The possibilities without a partner are pretty limited, so Maxim went on in search of a dance partner. With only a few weeks practice under his belt with his first partner, the pair took part in their first tournament—the Open Belarus Championship 2007, where they were Vice Champions, which Maxim says was “surprising and encouraging.”

Finding a partner

While his start in partner dancing was good, he says finding the right partner (or any partner!) wasn’t easy, and he faced a lot of discrimination along the way.

“My mother would get in touch with the girls’ parents or coaches and the vast majority had a very rude reaction as soon as they found out I was disabled. Nowadays the attitude towards disabled people in Russia started to change slowly, but back then it was pretty bad.

“The people my mother contacted didn’t even want to know what the deal was, they just refused to have anything to do with disability. Some other people (about 10%) were more open minded and polite, but they had a hard time figuring out what wheelchair dancing was and how a person in a wheelchair could dance,” shared Maxim.

Most of the time, Maxim’s partners would be noticed for their talent during competitions and would move on to a partner who didn’t have a disability. In the course of ten years, Maxim says he had about 14 different partners.

Check out Maxim in Virtual Reality!

Learning from coaches

His coaches really drove him to grow and develop as a dancer, and even without experience, came up with some great techniques to help him manoeuvre the chair more easily.

“In the beginning we were building the choreography around the standing dancer and my part was choreographed subsequently to make me fit in with the wheelchair. With time we really managed to adapt choreographies originally designed for two standing dancers and incorporate a great number of traditional elements of Latin dance,” said Maxim.

His dancing was elevated even further when his third coach forced him to think like a standing dancer. Maxim says this is what helped his performance to look like dancing rather than just rolling back and forth on the dance floor.

“He taught me how to do more than simply execute dance moves, he taught me to feel the music and the dancing,” Maxim said.

Not without its challenges

While Maxim’s dance skills grew to be exceptional, partner dancing with one standing and one seated dancer could be quite tricky!

Maxim said:

“The most difficult part was the closeness. The key aspect of dancing is that the two partners are very close to each other. This must be the same in wheelchair dancing. The standing partner must stand really close to the wheelchair… which means that any wrong movement with the wheelchair could cause a foot or toe injury for her!

“We had to go very slowly until the movement was perfectly assimilated and performed without staring at my partner’s feet!”

Dancing with CP

Maxim says one of the biggest challenges he faces is the fact that his left side is significantly weaker than his right. His left arm tends to repeat the movements that his right arm does, which can be a big problem when he’s trying to do asymmetrical movements or lead his partner.

“It can disrupt the rhythm of the dance and instead of feeling guided, my partner might get confronted with a counter-current momentum,” said Maxim.

Maxim also has to work with the lack of sensitivity in his left arm.

“When I have to move it while staring in the opposite direction, I don’t exactly know what it is doing. Managing this requires tremendous effort, and because of the lack of sensitivity, I also often hurt my fingers in the wheel,” said Maxim.

After 10+ years of dancing, Maxim says that making the same movements on both sides (rolling shoulders, turning etc.) with the same amplitude and speed is a challenge. This, he says is something he and his coach have managed to work around, and now, these weaknesses have been turned into strengths.

It also helps when his partners have more body strength than average dancers as sometimes they need to help Maxim stop the wheelchair, or pull it while remaining pretty and gracious.

Proudest moments

Maxim says his greatest pride is having taken his dancing skills on ice. He is the first high level figure skater in a wheelchair, and still the only one to this day.

What’s next for Maxim?

Maxim is taking a break from dance at the moment because of health issues, but is filling his time with other exciting projects.

He recently participated in a Russian Virtual Reality Project—VRability—which aims to motivate people with disabilities to get more active in real life. You can read about Maxim here.

He’s also working on a wheelchair that will be lighter, more technologically advanced, and easier to handle than any other chair that he has used. He has a concept, and is looking for funding to build his first prototype!


You can follow Maxim and his fiancé, Natalia on Instagram – @nagrimakis

 

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Layne Dixon’s Journey Through Sport

In 2014 I was a part of a research program at the Ability Centre (was known before as the Cerebral Palsy Centre) to see how running could change someone with CP (cerebral palsy). This was a 10-week program at the centre filled with running drills and gym equipment that we as the participants used. After the first couple of weeks my parents could see a massive difference in me, not only with my walking and my speech, but also my schoolwork improved, I was less tired during the day, I was happier and so much many more things started improving. As a result of me being more active and through running.

After those first ten weeks, we signed up to do another program with them, but this time the physios weren’t pushing me and the others hard enough to achieve the same result. In August of 2016 my mother and I reached out to Rebound WA, and they gave me a para running coach to contact, Mark. I did a couple of running training sessions with him and his athletics, but not long after that Mum and I both knew that I wasn’t good at running.

Mark asked me to get a classification, so I could compete on the track. A classification is a number which summarize your disability, everyone with the same classification has similar disabilities then you, e.g. I’m a T36 and everyone else that is a T36 runs similar to me. During my classification one of the classifiers asked me if I wanted to do something else as well as running and I said, “I don’t know”. The classifiers took mum and I to the shed, on the other side of the building in the athletics track, I sat down on a seated throws frame, and ever since then I knew it was for me.

Not long after that we got in touch with my first throws coach, Phil. He got me to throw a shot put standing up and then he got one of his athletes frames out to get me to throw in it. As soon as I did my first throw in the frame, Phil said, “I can get you to the Paralympics, I think you will be good at it.” And then six months later I competed in my first Junior National Championships at 16 years old, I represented Western Australia in the women’s mix para (seated throws and standing throws) under 20 shot put. Ever since then I became the under 18 and under 20 Australian record for F33 – seated throws: shot put, discus and javelin.

Athletics – classifications

Para-sport is very similar to able-bodied sport, but the only difference is; it is adapted, modified and possibly change to suit disabled people’s needs. Para-athletics is no different.

For most para sports each athlete has to have a classification, which is a number that represents your disability. I’m going to give athletics for an example – T/F21 classification is suited for everyone that has down syndrome, some of you may not know this as this is the newest classification in athletics. If you are competing against other para-athletes and from other classifications. Once your event has finished an official will take it away to get marked, and whoever wins has the highest percentage. This percentage is out of the world record. I don’t know about other sports, but for athletics, this is done this way to give para-athletes a fair advantage.

Para-athletics has one of the biggest classification systems there is. There are more than 30 classes, and these are based on your disabilities. e.g. cerebral palsy T/F32-38. The T means track, and F means field. At world competitions, you will only see one of them e.g. F33 and this means that there is an event on the field. Click here for more information on each classification there is for para-athletics.

Getting into para-sport

From my own experience with getting into athletics, I believe that there needs to be a change, to make para-sport more accessible to the disability community; and that change is now. There are so many sporting organisations out there that are designed for disabled people, and they are trying their best to expose disabled people to para-sports. Some of these organisations include; Rebound WA, Wheelchair Sports NSW and Sporting Wheelies and Disabled Association. These are just some of the para-sporting organisations throughout Australia. You can find the full list of them here.

Late last year the Australian Paralympic Committee setup a new program, The Paralympic Education Program. This is designed to educate our younger generation, primary and high school students about disability sports. They did this previously with the lead up to the London 2012 Paralympic Games, which was a huge success, so they have been running this program again in the lead up to the Tokyo 2020 (now 2021) Paralympic Games. Australian Paralympians go to schools across the country to educate the students in these schools about para-sport, as well as exposing them to disability. For more information on this please click here.

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The pop-up centre getting kids with CP moving!

Families are travelling as far as five-hours on a round trip to bring their kids with CP to Gympanzees’ all-inclusive pop-up leisure centre.

You might wonder why anyone would travel that far to go to a gym. For these families and their often-isolated children, the wonderful results being seen by this first-of-its-kind program make it a no-brainer.

Reportedly, 84 per cent of UK families with a child with a disability can’t access regular leisure activities. That sort of inactivity then has a knock-on effect for that child’s physical and mental health.

It’s not only the child that is impacted -this kind of societal isolation has an enormous impact on families. Reports suggest that 72 per cent of parents in this situation also experience mental health challenges related to the isolation.

Enter Stephanie Wheen-Gympanzees’ Founder and CEO, and Physiotherapist for children with cerebral palsy.

In 2016, Stephanie began extensive market research and early planning on how to overcome this issue, specifically in the Bristol area.

It was the tipping point for many lives to be uplifted by what was to come.

The project

All that market research led Stephanie to create Gympanzees, a fully inclusive leisure facility which would cater for people from 0 – 25 years of age with any ability.

The centres have many different types of rooms that each offer a unique way of getting active and having a sensory experience, including:

  • Sensory rooms
  • Music rooms
  • Indoor and outdoor playgrounds
  • Space for soft play
  • Trampolines
  • A gym
  • Therapy rooms
  • Studios for classes such as yoga
Her vision was about creating a safe space for people with disabilities to become fully engaged in play-motivated exercise. She also wanted families to have the support of being able to interact with one another.

“The major goal of Gympanzees is to encourage fitness in young people through play, using highly trained staff who can engage with each visitor using specialised equipment,” says Stephanie.

So, with all that in mind, she pitched her idea for Gympanzees to the Natwest Accelerator program and incorporated as a social enterprise in 2017.

The newly formed social enterprise went on to make plans for building the first permanent Gympanzees facility, but it became quickly apparent that this would not be a fast process.

Not wanting to lose momentum on addressing the need, Gympanzees became a pop-up exercise.

The first four-week Gympanzees pop-up was held at a special school during the UK Summer of 2018, supported by more than 80 volunteers and members of staff.

Every day, close to 56 children came through the pop-up gym.

The following Easter, Gympanzees held their second pop-up which saw tremendous growth with close to 80 children coming through the daily.

“We’re running pop-ups in school holidays because we know that’s a time when the families of children with disabilities feel isolated,” says Stephanie.

Alongside the pop-up gyms, Gympanzees has also grown a thriving online community, with social media being used to make sure people know when and where all the action is taking place. It’s also creating a place for families to communicate outside of the pop-up events.

The results

To-date, more than 527 people with CP have visited one of Gympanzees’ three pop-ups, and more than 3930 people have visited in total.

“Our research tells us that 98 per cent of those people loved their experience and would come again,” says Stephanie.

“Every parent tells us we offer unique facilities for them and their child that can’t be found elsewhere,” she says.

Approximately one in five visitors to a Gympanzees pop-up will travel for over two-hours for the experience.

“Several of our visitors spend close to a five-hour round trip just for one session,” says Stephanie.

“This tells me how desperate the need is for our service.”

To evidence the need and the results, three interns from the University of Bristol have joined with Stephanie purely to conduct research on the Gympanzees facilities and the impact it’s having on those it’s intended to help.

A subsequent report has been produced by the interns which lends great credence to the achievements of Gympanzees.

The report incorporates a substantial element of feedback on experiences had by those attending the pop-ups and has become a central feature of how Stephanie and the Gympanzees crew continue to evolve what they do.

“Our visitors have experienced countless health benefits, including drastic improvements to sleep patterns, new strengths, confidence in walking and in their other gross motor skills,” Stephanie explains.

Among the success stories coming from the early days of Gympanzees is that of a six year old who managed to take five steps on her own using her frame. Prior to this, her mum would move her legs for her, so this shows the scale of the progress made at the pop-up.

Another six year old boy learnt to hold his head up for the first time and was able to do so for a full 10-minutes.

“A particularly special moment for Gympanzees was with a man living with CP who joined his 3-year old son on a trampoline for the first time with the aid of hoists,” says Stephanie.

“The son had no disability and so this showed us the effect on the quality of life for our beneficiaries. It’s so obvious in the smiles and the strengths we see develop in our facilities.

“Particularly special was seeing a three year old boy laugh for the first time while using our equipment with his mum. She said it was the best moment in the last three years of her life.

“Our ethos and focus is on fun,” says Stephanie who shares the quote below which came from one parent that she feels tells the whole story:

“There is a difference between your child being tolerated and celebrated, and here it is so clear they are celebrated.”

It’s not just the people who use the gym facilities at Gympanzees that are benefiting from this initiative either.

The well-run café that supports the Gympanzees pop-ups is staffed by a volunteer adult with CP and his carer.

“It’s another great testament to our inclusivity, demonstrating how people with disabilities are central to the delivery of our project,” Stephanie shares.

Future plans

Right now, Stephanie is most focused on proving that the Gympanzees pop-ups can generate the minimum number of attendees each month to deliver financial sustainability for a permanent bricks and mortar facility.

“Each of our pop-ups grows incrementally, requiring more rooms and equipment, larger rooms and longer hours,” she says.

“We are planning to continue our pop-ups and building our supporter base, business model and offering the much-needed services.”

The hope is to secure funding and land for a permanent Gympanzees leisure centre to be built by 2022, with a long-term vision to open 13 such centres across the UK.

“On weekdays the facility will be used for regular play as well as therapy sessions, and on weekends, the studios will be available for birthday parties or other celebrations,” says Stephanie.

“It will be a social space for people to meet up, get to know and support each other.”

An online shop is also in planning so parents can purchase the equipment their children are using at Gympanzees and enjoy continuing development at home.

Stephanie has already been approached by other therapy centres and interested parties from across the UK who are interested in the Gympanzees model. This has led to investigations around the possibility of franchising the pop-ups with the aim of testing the concept in areas outside Bristol before building further bricks and mortar centres.

Gympanzees won the Major Award for Quality of Life in the 2019 World Cerebral Palsy Day Awards.

To learn more, visit gympanzees.org

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Bring home the importance of sleep, nutrition and movement for CP families

Dr Olaf Verschuren has been working with the Centre of Excellence for Rehabilitation Medicine, the UMCUtrecht Brain Centre, Utrecht University and De Hoogstraat Rehabilitation in the Netherlands for over a year to tackle the challenge of poor sleep, nutrition and physical activity in children with CP.

The doctor and his colleagues started by interviewing the parents of 15 children living with CP.

The clinicians wanted to know what concerns existed around making sure their children received proper sleep and nutrition, and that they were getting enough daily movement.

It quickly became clear to the project group that parents struggled in all three of the key areas being addressed. They worried about doing too much, as much as they worried about doing too little.

Also clear from the interviews, was the absence of evidence-based resources that could effectively support the families through this specific challenge.

The project team were well aware of the strong correlation between long-term health quality and sleep, nutrition and physical activity.

Obviously, it’s not practical or cost effective for families to bringing their children to see clinicians every day. So, how can parents give their children the highest possible quality of care in their homes?

Collaborating with parents

Dr Verschuren and his colleagues began collaborating with parents to develop online resources that would be useful in day-to-day family practice.

Alongside parents, the project group started identifying relevant sub-themes of sleep, nutrition and physical activity.

The collaboration was effective. A care-path was formed that followed three steps:

  1. Screening children with CP in the 0 – 8 years age group
  2. Identifying children with, or at risk of, problems with sleep, nutrition, and/or physical activity
  3. Providing care and support for these children and their families, starting with the resource development.

Bringing home the resources

In June 2019, the project published a series of resources to the CP-Nederland website (a patient focused website from the organisation previously known as BOSK) to address each of the three related health areas.

The resources are presented in a variety of easy to understand formats including infographics, videos, posters, cards and text.

In the first two months alone, the new web pages had been visited more than 1000 times and the infographics were downloaded more than 400 times.

Anecdotal outcomes

Most of the feedback received by the project team is around sleep.

“Screening for sleep opened the eyes of many parents,” says Dr Verschuren.

“But also, the physicians did not realise that sleep affected so many children and their parents.”

From the 80 parents the team have screened in the past six months, more than 75 per cent indicated one or more sleep problems.

Most parents have reported feeling that the website provided plenty of information on all the three areas covered by the project.

“There have been many suggestions that a great addition to the website would be a child-friendly resource as well,” says Dr Verschuren.

“We’re hoping to find funding to work on that in the near future,” he says.

Parents have also expressed their appreciation for all the information on the website being based on evidence that it is clearly organised and on a website they trust.

Future plans

Dr Verschuren says that being involved in a rehabilitation program is like being a professional athlete.

“For professional athletes, physical activity and exercise training programs are just part of their formula for success,” he says.

“Elite athletes know the importance of nutrition and sleep as ADDITIONAL key factors in sporting success.

“Physical activity, sleep and nutrition are considered the three main components that allow an individual’s body to achieve its goals related to activities in daily life.

“That’s why we need to pay attention to them and to optimise them for the maximum outcome we (the child, parents and clinicians) are aiming for,” he says.

While the website has filled a void for families in The Netherlands, Dr Verschuren and his colleagues know that easy to access information is not going to be enough on its own to transform the lives of children with CP.

They have their investigations set firmly on understanding:

  • how parents perceive the use, utility, usefulness and impact of the online resources
  • what more they need to enable them to integrate that knowledge into their lives and
  • how to empower them to support the long-term health of their child with respect to sleep, nutrition and physical activity.

In the meantime, the group are translating their resources into English to make them more accessible across the World.

This project was funded by the Innovation Fund from Health Insurance Companies in The Netherlands. 

To see the full suite of resources, visit the CP Nederland website.

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