Back Home

Well we’ve been home for 2 weeks today, Issey is finally over the rotten gastric bug that she picked up on the plane, and regained her vitality. Our ambitious plans to continue the therapy routine were rudely disrupted for a good week, back we’re back on track. A  trip to Rebel Sport to purchase some basic exercise equipment, including the essential bosu ball, straps, balls, allowed us, well Dave and Issey, to continue working on Issey’s core strength, stretching, and activating her muscles in all the various planes. The FES cycle is an integral piece of equipment that Issey is using 3 – 4 times a week. Every time she uses that her legs soften enormously, the spasming is reduced, and she can stretch her hamstrings out better than ever. Of equal importance, Issey’s mood lifts as well. We need to purchase some other key pieces of equipment like a Total Gym, which will allow Isabel to engage her gluteals and work on her quad strength.

I also wanted to share some excerpts from Isabel’s Project Walk exit report as a way to thank everyone who helped us get there.

 …..” It is more than apparent that you have the motivation, drive, and support necessary to continue through your recovery. You have already made obvious improvements……Please keep in mind that recovery is a life long process that you will be constantly working at to maintain the function and abilities you have achieved. You have all the pieces necessary to recover function, you just need some help putting them together. Keep working hard!

So its all pretty cool. There’s lots of work to be done, and the challenge is fitting the ‘Recovery program into a balanced life.

 I also wanted to tell you about another clinic we went to the Saturday before we came home… Awakenings. http://www.awakeningshealth.org/  Here we were equally impressed, and blown away by the generosity of Laura Kirch and Adam Gries. These guys have a clinic similar to Project Walk, where they have a core belief that recovery from spinal cord injury is possible. Laura herself had an accident and had a C5/6 injury, and was confined to a wheelchair. The day we met her, there was no sign or legacy of that at all, she is proof that recovery is possible. Anyway Awakenings has their own ’stamp’ on their program. They too focus on the physical exercise recovery, with a stronger emphasis on the holistic healing of the individual, supporting them with acupuncture, massage, counselling and an individualised approach.

We sat and talked for a couple of hours with them, whislt Laura gave Isabel a Thai massage, which looked heavenly. Laura noted Isabel’s tight hamstrings, and re emphasised the importance of breaking down the tightness as much as we can. She told us of patients who had also had this problem who had been able to resolve it with the exercise, acupuncture and massage. Each of us knew of others who had undergone surgery to correct the problem, only to find that the surgery had created another problem.

The beautiful energy of Laura and Adam touched us all. They are offering a wonderful program for those with ‘neurological disorders’.

Heading Home

Issey completed her last session at Project Walk on Friday. In between Halloween treats, she continued working out her abs, back muscles, pelvic floor, and leg muscles. However, whilst she worked on her physical body other parts of her were also benefitting and as we look back over the last incredible month I would like to summarise what we see have been the benefits, beyond just the physical. Her spirit has lifted and her innate sense of self has been allowed to grow. From where I sit it make sense. Her mind and her body have wanted to move, and have wanted to explore the possibilities. At PW she has been given the green light to do this, with some fundamentals: ‘you’ve got to work hard if you want to improve’, and ‘we believe that your nervous system can be retrained, and learn new pathways to communicate to your body”. Having these fundamential beliefs, has allowed Isabel’s spirit to express itself.  As we arrived into the gym for each session there was always another 9 or 10 people with injuries – many of whom were more profoundly affected than Isabel. Seeing them working out with the courage and belief in their dreams can only have been affirming for Isabel. A reminder that what she wanted, that what she was working towards was something others like her also identified with. Its so important to find a place where you feel you belong and where people have similar values and beliefs. When we waved goodbye on Friday, and Issey’s tears flowed, I felt  a mixture of emotions, mostly thrilled. We had done a great thing getting Issey here. Issey now has a much better chance to fulfil her innate potential.  I also felt a  responsibility to help other families, and the frustration  that the Australian facilities and mind set are such a long way from where had just come.  We have alot of work to do now. I’m really  excited to have had the privilege of being on our journey … there’s so much that can be done, and we have the chance to help change the course of the status quo. Thank you everyone, for believing in us, and believing that you could help. You have!!

Coming Home!!

Hi everyone!

I can’t wait to get home see you all! A really really really really big thanks to everyone who made a donation and  got me here!  America has been so so wonderful and fun! Project Walk has  been one of  the best expieriences possible for me. As much as I love America I can’t wait to get home, I’m really starting to miss Australia.

From Isabel.

P.s: did you knnow america doesn’t have cadbury chocolate?

Whilst Issey works hard, Charlie takes a drive.

She doesn't look it here, but she was working really hard to crawl.

Charlie driving around at Legoland

Week 4 at Project Walk

Issey is now counting down, 3 more 2 hour sessions and she will have completed her 4 weeks at Project Walk. She continues to love it, and really thrive during her sessions. The last few sessions the emphasis has been working on her core and back muscles, as well as kneeling, strength and flexibility exercises for her legs. One of the key exercises has been with Isabel semi reclining on a Bosu ball, with her legs weighted in V extension. Her trainer throws her a ball, she catches it over her head and returns the throw. Every catch and throw requires her to recruit her abdominal muscles, and she  has developed a really strong throw. The trainers had to duck and hide today she was in top form. Following the training, Issey had another Acupuncture session with Michael. She had more pins in her than the proverbial pin cushion.  She is accustomed to maybe 4 – 6 needles in a treatment, and today she had  about 8 needles in her head, 6 in her back and hips, another 3 in each leg. It was a really powerful treatment, knocking her for a bit of a 6. She came home and snuggled up on  our bed and watched some TV , only bouncing back after dinner. I’m sure she will sleep well tonight. We’ll be watching to see if there are any changes/ improvements in her sensory feedback .

I forgot also to let you know about our weekend with Jessica and her family. We met at the beach, Issey warm in her wetsuit, and Charlie armed with his boogie board. Jessica and her sister Marie, are from Arizona, 7 hours drive from the coast, so neither of them had ever been to the beach. They were really excited, and had a ball, as did we all. The surf was pretty rough and dumpy but didn’t ’stop the boogie boarders, nor Issey being washed around in the waves. It was a happy few hours, and Issey’s joy turned to frustration when she got sand in her eyes and couldn’t get it out til we were home and showered. Later in the evening we met  Jessica’s  family for dinner. We compared notes on all sorts of things, whilst the girls and Charlie had a ball exchanging their stories of school and their wild antics. I think both families learnt something from each other, and we will stay in touch. One thing that was really useful for us to know, is that whilst Jess’s family thought the Kennedy Krieger hospital centre was fantastic, and really good, they felt that Project Walk was alot more focused on precision in body positioning and working on all things that would build towards a normal gait. This feedback is really relevant as we had felt some disappointment in not being able to get there ourselves this time. Based on our good experience at PW , costs, logistics etc, it looks as though we came to the most suitable clinic for Isabel at this time.

As we approach our last week at Project Walk, I wanted to provide a little more detail as to what it is like. Based in Carlsbad, its a 15 minute drive from the Carlsbad village, located in the industrial area. The facility is quite something, much bigger than I had imagined, a very big warehouse, very well equipped for people with SCI. As you walk in Gigi on reception welcomes everyone and looks after their every need from schedules, to information about local sites, babysitters, you name it, she is available to help and is just a delight.

Moving into the gym, its just huge. I think it would be about 50 m from the reception to the end of the gym, maybe more. Everyday, every hour there are at least 8 – 10 clients working out, with 1 trainer and often 2 trainers. If required for a specific exercise a third trainer may be called from the floor, referred to as the floater. Then each client usually has a family member or carer with them, so typically there is 30 -40 people in the gym all located at various exercise ’stations. Music is playing filling the air with an energy …. Friday being ‘reggae’ day. Whilst everyone is working hard, focused and committed its quite relaxed … probably easy for me to say, since I’m not working my butt off, but its not like walking into a ‘pumping gym’. There’s quite a bit of banter, and exchange going on between each client and their trainer.

The bathrooms are something of a disabled person’s dream, with 5- 6 bathrooms, each with facilities that are fresh and clean, auto hand towel dispensers for those whose hand dexterity is compromised, plenty of room to manoureve 2 people and a wheelchair of any size. I don’t think I’ve seen disabled bathrooms like these in Australia.

The gym equipment whilst in many ways is familiar with .. yoga mats, straps, bosu balls, blocks, ‘Total Gyms’ cycles, also includes specialist equipment like FES bikes, ‘Step Ahead gliders, treadmills with hoists and harnesses, and ‘therapist tables’. These tables are great, and are various sizes. All of them are positioned at least 80 cms above the ground, and allow the ‘clients’ to transfer from their chairs onto the tables for a whole range of exercises, that can’t be done on the floor. They are also great for the trainer , as they are not continually bent over on the floor.   

The ages of the clients vary from 6 years, to possibly…60 years. Most are youngish, between 20 – 30 , none of whom planned to be where they are. Car accidents, swimming accidents, medical accidents. They come from Norway, Brazil, US, Japan, Canada, and Australia.

The work everyone is doing is a combination of strength,flexibility, yoga, pilates, developmental movement patterns, gait training. All these exercises at a fundatmental level are important for everyone’s optimal health. We might not all exercise as we know we should, but if we want to, or if we have a muslce twinge or want to exercise, we have access to a facility like a gym that we can attend. Project Walk is this,  plus a whole lot more.

Over the next few days we hope to understand more about what would be involved to set up a facility like it for spinal cord injured people in Melbourne.

Week 3

Hi Everyone, we are very grateful for the comments and feedback.

Week 3 at Project Walk began really well and today Issey’s trainer, all smiles, said that she had the best session of all. Today Dave was with Issey whilst Sue and I took Charlie to Target, ( lucky boy) and the beach.  Before today’s  training session, Issey had some  acupuncture and  it seemed to make an impact on her body’s readiness to fire neural communications. One of the analogies the acupuncture team use is : ” patients with a SCI, are like people trapped inside a dark room. Those who stay motiionless will remain in the room forever. Those who exercise are probing for an exit, but the door is still closed. Scalp Acupuncture acts like a key. It opens the door and allows the light to shine through, but the person still needs to move towards the door, and lift his legs over the threshold, in order to step into the sun. Otherwise, he is still confined to the room, no matter how wide the door is opened.

According to Issey’s trainer, today Issey’s legs were more responsive, and her mental attitude was as good as she had seen it. The Acupuncture team have also talked to us about the success they have been having with patients re personal care functions. Probably a topic off limits, for Issey.

The last few days have been cooler than the average temps so we had a few days off the beach, but today the weather was again magic, and we spent the remainder of the afternoon playing on the beach and watching the sunset.

Week 3 @ Project Walk

This week, Issey will complete 4 x 2 hour sessions. Today she had steady session, repeating the range of exercises that she practised last week. She was full of cheek, so Roya threatened her with all kinds of extremely hard exercises, which settled her down and helped her focus.

We also saw a ‘new girl’ at the clinic, a similar age to Issey which was an unexpected surprise. Her name is Jessica, she is 11 yrs old and is from Arizona. She too is paraplegic, however her story is very different. Last year she fell out of a window of her 2nd story home. Her family are very keen to give her the best opportunities to recover function.  She has just completed 2 weeks at Kennedy Krieger. For those who attended The Mirror Ball, you may remember the video from Dr John MacDonald. They worked with Jessica for 2 weeks intensively and she is at Project Walk to benefit from the unique program it offers. Tomorrow the girls will get sometime to hang out a little. I think they will motivate and inspire each other. We’ll let you know how they go.

Dad and Sue arrive: YAY!!

Dave and my sister Sue arrived safely on Friday, and Suzy who was such a wonderful support in all things, from upacking the car, looking after the kids, being super physio, not only to Issey but to Charlie with his broken arm,  flew home back to Melbourne. So Issey’s weekend off was spent having quality with Dad, and Auntie Sue.  On Saturday we went to the beach and the kids had a go at Boogie boarding. Charlie took to it like a duck to water, and headed out further into the surf than I was accustomed to, and had a ball.

Issey had an interesting few goes. Firstly the boogie board she had was faulty, so one of her first goes, saw her being catapaulted in a back flip over the board, and into the water, to be tossed by the surf, whilst Dave tried to retrieve her. Whilst she found it scary, she said it was fun, and loved the thrill. After that we found another less faulty board, and she had a another few goes in the shallow water which she loved. That boogie board didn’t last too long, so she abandoned it, and played happily in the waves for the afternoon.

Sunday we journeyed back to SeaWorld to see the amazing ‘Shamu” show, and catch more of Seaworld that we missed the first visit, using our “FunCard”. The card is great value, and allows you to visit Seaworld as many times as you like for the same fee as a 1 day pass. The Whales were just spectacular. They say be prepared to be affected profoundly, and I think we all were. We watched 4 whales, perform and play and it was such a privilege. Afterwards Charlie was desperate to go on a ride called ‘ Trip to Atlantis” or something like that. It looked scary, and Issey was fairly reluctant to go on it but did after we cajoled her into it, all of us wanting to have the benefit of not lining up. She hated it, and we have a photo to prove her terror. So I don’t think she”’ ever be a rollercoaster junkie. Charlie on the other hand could be.

Train the Trainer

Another wonderful week! This week was Train the Trainer week. This entailed Issey completing 2 hours therapy in the morning, starting at 8.00 am, followed by an afternoon session where the Project Walk trainer trained Suzy our physio from Australia. Typically these sessions go for 3 hours, but we found that Suzy learnt quickly, and the additional 3 hours was too much for Isabel. She had to work so hard, and would come home absolutely depeleted, so the sessions were reduced to 2 additional hours.

We are seeing important improvements in Isabel’s hamstring flexibility and her voluntary recruitment of her legs for crawling. She is working hard on her trunk muscles and back muscles. Probably her least favourite exercise is called “the Wall”. This requires her to be seated with her back to the wall, legs fully outstretched and to actively hold her back to the wall, and then adding a range of arm movements. As many of you would know, Issey usually wears a brace to provide her with this support. There is no brace being used, it requires Issey to activate muscles that she is just getting to  know,  and its hard.

Whilst Issey and Suzy worked hard, Charlie and I had some lovely walks on the beach jumping the waves. The beach is just divine, it stretches for miles both ways. The space and fresh air have been wonderful revitalisers for all of us.

The Southern Californians have been gorgeous.People on the beach have offered their help when they’ve observed I needed another pair of hands or eyes, there is no agression on the road, even though I have given them reason at times, the ladies on the check out at the supermarket ask the next customer to lend me their membership so that we get the store discounts and they are really friendly and respectful to each other. The whole experience is incredibly positive and I am just so thrilled that we are here.