Regaining independence and back to enjoying life

Regaining independence and back to enjoying life

Getting the right support and making small changes to everyday living can mean the difference between an isolated life full of struggles and the road to independence.

For Paul, finding a provider that was able to recognise exactly what he needed help with and helping him overcome these issues has been key to get his independence back, be part of the community again and enjoy life.

Paul was born as one of nine children and lives with spastic quadriplegia cerebral palsy, which has affected his right upper and lower limbs and spine.

“When I was young, my Mum and Dad treated me just like the other kids in the family. I had to try to do things for myself.

“At about age four, I could no longer walk and was reliant on a wheelchair. I have been dependent on a wheelchair ever since.”

Now 64 and living alone, Paul has found he needs more support to help him get around. 

“I live on my own in my family home. I lived with my parents in this home until they passed away, then my brother lived with me. He has also passed away, and now I live alone.

Unable to get around

Paul used to use his scooter to get out and around. He would ride around with a stereo attached to it so that he could play music as he went about his day.

But over time Paul’s physical abilities declined which had a big impact on his independence. 

“As I get older, my physical abilities have gotten worse. My body is buggered, I experience back pain, and my left shoulder is worn out from doing all of the work. I cannot use my right upper limb, so my left arm has done a lot of work over the years.”

Because of his inability to get around, Paul started feeling more and more isolated.

“I have felt a lot more isolated in the last couple of years because I lost the ability to transfer onto my scooter/ gopher and so can no longer go out by myself.”

Finding support

It was Paul’s sister who made contact with Living to the Max Occupational Therapy, a South Australian Occupational Therapy Service, 18 months ago because he was having trouble getting onto his scooter.

The organisation connected Paul with Occupational Therapist (OT) Tracie McInnes, who could clearly see he was struggling with day to day life.

Paul says that Tracie and Living to the Max are helping him gain his independence back and have already introduced changes to his life.

“When Tracie came to visit me for the first time, really all I had received was a bathroom modification to make showering easier for me and my support staff.

“My left shoulder had become painful, and Tracie helped me to understand how much pressure I was putting (on) my shoulder when I was transferring from my wheelchair, into bed, and onto the toilet. 

“She raised a lot of concerns that needed to be addressed, and now I have NDIS (National Disability Insurance Scheme) funding to be able to support my needs a lot better.

“I now have more support hours, so I can have a carer attend to help me get out of bed, make fresh meals and then to transfer into bed at night,” Paul continues.

“I like to be as independent as possible, and so we have looked at ways to improve my safety to transfer on and off the toilet during the day. I now have a ceiling hoist lifter to transfer in and out of bed, to help protect my shoulder and preserve my function.”

An education process

Tracie explains that the process of informing Paul about available support has been an education process.

“It’s [been about] making Paul understand that there is so much available to help him.

“[It’s] now our job to make sure he gets the equipment and support that he needs.

We’ve been able to demonstrate to the NDIS what his real needs are.”

Tracie, and Living to the Max, have also helped Paul access funding to keep his garden tidy and for some essential home maintenance to be done, which Paul is grateful for.

“We have also looked at re-orientating my bedroom, so there is more clear access for my equipment, lowering light switches in my home so I can reach them more easily and moving my TV on the wall, so I can still watch TV in bed,” Paul adds.

“Tracie has also applied for a door automation system to my front door, as she was concerned that I was leaving the door open when I was expecting someone.

“I have struggled along and managed for many years, but now that I’m older things are getting harder.” 

Life-changing

They may be small changes and insignificant to some but for Paul they have been life-changing and he is grateful for the ongoing support.

“Tracie and I have a joke and a laugh, and I am always grateful for everything she has helped me with. She really cares about me and is doing everything she can to make things easier for me at home, but she is also working hard to give me back my independence so I can go out into the community and have fun. 

Tracie is a beautiful person to work with. She has done so much for me.” 

Out and about once more

One of the biggest things Paul is looking forward to is receiving his new ‘wheels’.

“With Tracie’s support, I have a powered wheelchair that has been approved, and I am waiting for it to arrive”.

Looking forward to being out and about again, Paul has one requirement for the new wheelchair, adding that they “need to make sure music is put on the new wheelchair as well, one way or the other”.

“I can’t wait to receive the powered wheelchair, so I can go out again to the shops or to the bank or just to go out on the street and have a chat with people.”