Keep On Moving

Back to blog2 years ago by Jodie
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woman in her 50s with cerebral palsy in a wheelchair with mounted communication device
 
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With the support of her therapy team and her new powered wheelchair, Hunter resident Dorise has a new lease on life.

Here Dorise and her occupational therapist Nerita share their story  … 

Late last year Dorise, her carers and I began discussing the idea of introducing her to powered mobility which could help improve her independence and give her greater freedom to do the things she wanted in life. At the time, Dorise was uncomfortable, her manual wheelchair was ageing and desperately needed replacing.

‘I had had the same wheelchair since I was in my 30s. Although it served me well, I think I deserved a new model,’ said Dorise.

‘In the beginning, I went to the Stuart centre and met with my Occupational Therapist (OT) and a supplier to trial a new wheelchair with a ‘Head Array System’ attached which would allow me to drive my own wheelchair independently. Woohoo!’

Dorise’s seating needs were quite complex and couldn’t be solved by using readily available commercial seating equipment.

To give her the best chance of achieving her goal of independent mobility, a team approach utilising the skills of therapists and equipment technicians was needed to customise her equipment to suit her particular physical needs and abilities. To help us do this we enlisted the support of Cerebral Palsy Alliance’s seating specialists in the TASC (Technology and Seating Consultants) team.

The first few sessions and trials of powered mobility started in February this year. During these sessions we ascertained the best way for Dorise to easily control the wheelchair – we needed to work out what was the most direct, least tiring and reliable way for Dorise to comfortably and independently move in a powered wheelchair.

Dorise has very limited control over her body and no reliable movement below her shoulders, but she has good control over her head movement. She quickly picked up how to tilt her head to activate the switches or ‘buttons’ built into a headrest, also known as a head-array system, that could help her independently move the wheelchair.

‘To see if I was suitable for the ‘Head Array’ equipment, I was given the opportunity to experience first-hand the joy of independently driving a powered wheelchair. My therapy team filmed me using my head to activate the head array system to drive forward. To turn my wheelchair, I needed to click the left button with my head to go left, and the right button to go right, and in order to drive forward I had to rest my head on the back button. When I need to stop, I have to release or bring my head forward and this will stop my wheelchair from moving,’ said Dorise.

However, we soon realised the downside of using the head-array system was that Dorise found it tiring to keep her head upright for more than 15-20 minutes. The headset was the only way Dorise was going to be able to control her own movement, so we needed to work out a seating position for her that was not only comfortable but allowed her to easily use the headset for long periods of time.

A TASC seating specialist and I worked to prescribe a suitable customised seating system for Dorise to help her sit upright and ensure she was comfortable while sitting for extended periods.

At the same time I also helped Dorise select a suitable powered wheelchair base, and worked with her to determine which one would be the best fit for what she needed it to do and where she intended to use it. Dorise is a very sociable person and loves to go out, so the wheelchair had to be easy to manoeuvre and handle being used in a range of environments.

The next step was working with Dorise to complete an application to the NDIA (National Disability Insurance Agency) to fund her new wheelchair and seating system.

Dorise was able to secure funding through NDIS (National Disability Insurance Scheme) for her new wheelchair in a relatively short time which meant it was only a few months between applying for her new wheelchair and it being ready for delivery – previous funding may have taken up to a year or longer.

Once her funding came through, Dorise attended a series of fittings over the following month with the specialised seating team so that her customised seating could be moulded and shaped to fit her body.

As part of this process, her new wheelchair base and new seating were also fitted together. Dorise was also able to try out her new seating for a couple of weeks to check it worked well for her and her carers before it was fitted with its permanent cover.

By the end of June, Dorise’s new wheelchair and seating were complete. Next was a visit from the supplier and myself to set-up the wheelchair control system that would help her move herself independently. Her new and improved seating worked a dream!

Dorise could now sit upright in her new seating which meant she could move her head much more easily to use the controls in her headrest.

Finally she was ready to test-drive her new wheelchair system. We visited a local park where she had space to move about freely and practice moving herself around in her new wheelchair for the first time. 

By the end of the practice session, Dorise had a glint in her eye … she was so thrilled with being able to move all by herself that she proceeded to wheel herself all the way home and through her front door!

Dorise recalls her first experience of using powered mobility to move by herself…

‘During my independent driving around the large room at the Stuart centre, my OT and my support worker, Karen, had to move several tables and chairs as I negotiated myself around the room. My OT was instructing and training me with basic commands as I was driving forward, towards Karen, who looked surprised and slightly scared. As I moved even closer to her, Karen quickly moved away and I turned my chair to follow her.’

‘I was so busy following Karen that I forgot how to make my wheelchair stop-  the OT was repeatedly saying bring your head forward off the button and you will stop but I was having so much fun, laughing and chasing Karen and hearing her squeal as she moved to get out of the way… I couldn’t control my laughter and I had almost pinned Karen between the wall and chairs when all of a sudden I stopped as the OT rushed forward and stopped my chair manually.’

‘Although I had come close to running over Karen, I was still laughing. What fun and happiness this will bring! No, not the running over staff, but driving independently! I know I will need lots and lots of practice before I master this new skill, and I hope not to cause too many casualties along the way… HAHAHA– I PROMISE!!! -SERIOUSLY.’

This remarkable journey has only just started and is ongoing as Dorise continues to refine her mobility skills with the support of her carers and guidance from her occupational therapist.

It has been wonderful to witness Dorise experiencing the freedom of movement many able-bodied people take for granted. 

Where she goes… will now be up to Dorise! 

Nerita Taylor works as an occupational therapist with our Hunter therapy team.

Click here to find out more about our disability suppports and services for people with a disability of all ages living in the Hunter region.