True inspiration!

Two and a half weeks ago Kev went to Aylesford House, a Brightwater rehab unit in Perth, for 3 weeks’ assessment/respite. To stop me worrying about him and jumping in the car to rush and see him, I’ve spent 2 weeks in Bali, with all four girls coming for different lengths of time.

This has given us all some much-needed breathing space as I try to plan our next move in Kev’s road to recovery. I felt at a loss as to what the next step should be and was concerned as there was a definite relapse, most likely caused by me being very tired and needing lots more support for both of us in his daily life.

I have been told that a repeat CT, bloods, oral hygiene and Kev’s footdrop will be attended to during his stay. After meeting the staff and seeing how they handled things, I felt confident to take the leap and leave him in their care.

So this was an opportunity with great timing and I’ve had lots of great things happen that have empowered me and given some positive direction:

1. Read a book called “Paper Cranes” by Cheryl Koenig, whose son Jon had a massive TBI (GCS 3). She went with her gut instinct and would NOT allow her vision to be clouded by negativity and those who dwelled on the negative. Doctors “wrote him off”, but she refused to believe Jon wouldn’t recover from his injuries. From the start she was determined that he would get well. As a result of her initiative and hard work Jon is now working part-time after completing year 12 at school. He now walks and even runs! He is able to eat, talk and look after his personal needs. We are talking here about someone who was given the prognosis of being a so-called “vegetable” (hate that word; you know – would you like to be a kumara or potato, cauliflower or broccoli?). It’s a great book, and I encourage all who want an insight into our journey to read it. Cheryl has gone on to become an active campaigner, and among other things is a member of an advisory panel for the Australian Brain Injury Association.

I have been in touch with her via email and she has responded promptly and with great warmth and compassion; this in itself makes the journey not so lonely! She has some great suggestions and fantastic contacts for networking, e.g. Bobath physiotherapy (she has given me the name of a physio, Gavin Williams, whose praises she sings for his unique and tailored work), Dr Ted Freeman (author of a book called “The Catastrophe of Coma” that has been a tremendous inspiration to many in our situation; see here for a great interview) and the Epworth Centre of Rehabilitation for ABI in Melbourne.

2. Met a lovely lady, Shelly, who lives between Bali and Christchurch. Eight years ago she had a horrific accident and was treated by a family friend who is very well known for his work, which involves the use of the Feldenkrais Method. And yes, his forté is spinal and head injuries. He goes to Bali once every 2 years or so, and amazingly he was in Bali at the same time as me! Shelly told him about Kev and he met up with me twice. His name is Patrick Douce and he was nothing short of amazed when he viewed Kev’s progress over the last 8 months (we have video footage on the video camera).

Patrick lectures professionals and works with people who have injuries such as Kev’s and, as I said, was very impressed. He said that he has complete faith that Kev will keep on healing and that he has great potential!! Well, I’m walking 10 foot tall (and as a bit of a shorty, that is saying something!).

Patrick and Shelly will keep in contact via email, so that’s another two great supporters. Thanks Patrick and Shelly!

3. Shelly has experience in employing Balinese people and may be able to help with getting staff to assist with Kev (for this, we DO have some funding for Kev).

4. Met some amazing people with story after story of the ability to heal after massive injury. One guy sustained TBI when he was run over, and he was in a coma for months. Six years later he works as a plumber again and cares for himself. A NZ girl who fought the odds had her spine fused; her parents sold their home to pay for treatment and then spent 1 year teaching her to walk again, etc., etc. …

The common thread in all these stories and the message coming from all the people mentioned here are the belief that the body will heal itself and the importance of treating the recovering person with dignity and respect. Having no doubt!

So, on to the next exciting episode of “Caring for Kev”. Read more!

April antics

Well where does one start with such a vast emotional roller-coaster of success and challenges, highs and lows?

Physical achievements

Ball throwing into a large basket is going very well, especially now that Kev has retrained his right hand to not only throw, but to let go. Two completely different actions following each other spontaneously. Nine times out of ten it's a goal!

Perfected cross-crawling - what originally took 15 mins to cover, he managed in record time of just over 1 minute within only 7 days. April saw Kev determined to manage this level of independence. Cross-crawling is fantastic because having both the left and right hemispheres working in harmony exercises the brain! He even crawls backwards when necessary.

Wonderful transferring from bed to chair, chair to bed, floor to chair, chair to floor, bed to floor, floor to bed, chair to bus and cars with minimal assistance. These skills have been witnessed by many others.

By mid-April Kev was requesting to get into the front seat of the bus (quite a feat for even the mobile). He initiated and organised the transfer, and I followed his lead to do so – his efforts were very successful, not to mention great for his sense of achievement.

He also developed an independent technique for transferring from his massage chair into his wheelchair, pulling the chair over and sitting on the arm of the massage chair, then with many small manoeuvres getting himself into the wheelchair. The first attempt took 10 mins, but he showed no level of frustration and displayed complete perseverance. Take a look at this!

Other developments

• Lifting the footpads on his wheelchair to propel it by moving his feet.
• We developed a “buddy walking” system where Kev puts his arms around the shoulders of two people and walks in this fashion; this gives him a great stretch and helps him stand tall.
• Wheeling up and down ramps independently.
• Jean’s friend has kindly leant us a standing frame that he made. It attaches to the bench. So far Kev has only been able to use it a couple of times, but it will be great to use in the future to assist in reverting the footdrop.
• Initiates walking down stairs using buddy walking; there are just two steps, but it’s very successful and we are really proud of him!
• Not at all keen on showering, and getting frustrated with shaving at times. Maybe this is related to repair of the axonal diffusion, which causes nerve damage throughout the body?

Read more!