Well it has been quite a few months again since my last update on Candi’s progress. For those of you reading about this for the first time, you might like to start here to read from the beginning. To very briefly fill you in, my beautiful elder sister, Candice, fell off a 4 story balcony on July 17th 2012. She suffered serious injuries to C6 & C7, resulting in her being classified as a complete quadriplegic. Two weeks later, she sadly had 5 strokes causing moderate brain damage. She has come a long way in 13 months, but still has a very long road to go.
I have been writing these posts to share our story, with the hope of connecting, guiding and touching anyone else who has gone through a similar tragic ordeal. It has obviously been life changing for Candi and also my family….particularly my mum who continues to go into the Quadriplegic Centre every single day as her advocate, joint guardian, carer and best friend :-). My bond with Candi has always been strong, but continues to blossom with how much more love we have for one another since she had her accident.
My sister is still making improvements which is so fantastic! She only got sick once throughout winter which set her back a little bit, but she got back on track quite quickly the little superstar!
We do feel however, that there’s only so far she can improve with the limited amount of treatments available to her with no funding, as it’s so expensive. More on this in a bit…
I am very chuffed to tell you all that Candi now has feeling in her legs! Woohoo! There’s still no movement, but she does have sensations now which is a massive step! She also for the first time a couple of months ago, told my mum that her pants were too tight around her waist…another sensation she’s never had until now :-).
Candi is also making improvements with her speech. This has been quite a slow process as she’s had very limited sessions with a Speech Pathologist (SP). When she was at Shenton Park, Candi would only see a SP once a week and now at the quad centre, she only gets a little bit of treatment on her speech with the Occupational Therapist (OT). We truly believe that most of her improvements have been coming from a combination of treatments at the Institute of Functional Neuroscience (I’ve written about IFN here and here), the supplements Dr Tabrizian has put her on, plus the incredible German acupuncturist (who’s also a cardiologist) we’ve started taking her to, who collectively have all been working on rebuilding new neural pathways in her brain.
Candi has been working very hard most days in OT! Her therapist has started putting Candi on a tilt table and slowly each week, increasing the degrees. This is to help with the blood flow around her body and to assist with her blood pressure in an upright position.
Her therapist has also been putting her on the flat bed to get Candi use to holding herself upright using her core muscles. To out delight, Candi has even started to be able to move her body forwards and backwards…check it out in the video below! I love her little “yeah” at the end
Our Dream Treatment Program For Candi
Our dream, hope and deepest desire for Candi is to give her as much independence as possible. We have accepted that her life will never be the same, but we want her quality of life to be the best it can be. For this to happen we desperately need to start with a much more intense rehabilitation program.
We feel so fortunate and grateful to have some amazing alternative treatments and doctors available here in Perth.
The treatments we’d like Candi to be doing weekly, twice each so 6 treatments a week, are:
1. The Institute of Functional Neuroscience (Dr Randy Beck)
- Due to Candi’s strokes, it is critical that she re-connect her brain with her body. The clinical application of functional neurology focuses on modulating the activity of the brain, which in turn changes activity throughout the nervous system.
- The functional neurology approach uses the natural phenomenon of neural plasticity to bring about change in targeted areas of the nervous system. This is done in order to encourage nervous system function as far as possible.
- The methods utilized in functional neurology tend to be conservative, non-surgical and non-pharmaceutical interventions.
- Since beginning treatment at IFN, Candi’s level of comprehension has returned to the normal range
2. The Remede Centre (Dr Jerzy Dyczynski)
- As with her brain, Candi’s heart went into shock after the accident and there has been a complete disruption of her nervous system. Recent research has seen the emergence of a new understanding of how the heart and brain interact in a dynamic relationship that regulates aspects of cognition and emotional experience.
- Since the accident, Candi’s heart has been under enormous stress, as evidenced through Dr Dyczynski’s Cardio-Stress Imaging technology. This has caused a disruption of the synchronisation between her brain and her nervous system and her heart’s own intrinsic nervous system. When the information going from the heart to the brain is disrupted, this impacts on decision making, creativity and especially emotions.
- The area of heart-brain connection (Neurocardiology) is the area of expertise of Dr Dyczynski’s, whom we are very fortunate to have here in Perth. Since beginning acupuncture treatment, Candi has shown a marked improvement in her ability to relax her shoulders and arms, and her vocabulary has also improved which is very exciting!
3. Walk On
- Walk On is an individually designed intensive activity based rehabilitation program to assist a person with a spinal cord injury to improve and maximise their functional ability and lead a more independent life.
- The program involves intense, dynamic, weight-bearing exercises all performed out of the wheelchair one-on-one with a qualified Exercise Physiologist or Physiotherapist. Walk On is a community based rehabilitation program available to people following their discharge from hospital. Walk On clients regularly report significant functional improvements from their involvement in the program which has led to a positive impact upon their quality of life.
- We’ve taken Candi there for a consultation but have not begun treatment yet. Candi is incredibly excited about starting here!
As you can see, we have an incredible ‘dream team’ rehabilitation program for Candi. Unfortunately, these alternative treatments are not covered by government funding.
This is why I have organised a fundraiser for my darling sister, so we can raise enough money to be able to do all the treatments and frequency required to give her the best possible chance of recovery.
If you live in Perth and would like to attend ‘Candi’s Girls’ Night Out Fundraiser’ on the 18th October, I would absolutely love to see you, your sisters, mothers and girlfriends there :-). To buy a ticket to this event or to make a donation, please check out the poster below or head to her Facebook Page.
We are very grateful to the Paraplegic-Quadriplegic Association of WA who have made it possible for us to have a special charity license for Candi’s fundraiser; this means that any cash donations made by individuals or businesses will receive a GST invoice and the donation can be claimed in next year’s tax return. We hope this will provide extra incentive for those able to help us reach our goal of raising $100,000 to pay for Candi’s treatments over the next year and also get her out of the Quad Centre and back home with mum.
On behalf of Candice and my family, I would like to sincerely thank you in advance for any donations or tickets bought. We really do appreciate it hugely, and will be keeping you all in the loop with how much money we raised and how we intend on using it for Candi’s treatments and care.
Love Liz xx