We are pushing #City2Surf – to raise awareness and funds for community support……

I collected our team bibs for City2Surf2015 and started to get excited, less than 48 hours!!

We had our last training session on Wednesday which went well except very breezy which meant Emily and Cobie both felt cold. We had a group discussion about layering up for Sunday. I can assure you all now that there will be no shedding of clothes when these two race! Keeping warm is an issue as a wheelchair user.

 

Emily is fortunate to own I/O Merino garments, light weight layers that help conquer the cold. The altitude full length tights are the ultimate underwear. These thermals are lightweight making them perfect for layering and the mid rise fit with an elasticated waist band ensures that they will never slip down. The altitude lightweight long sleeve top is perfect for wearing on its own or when exercising as the fabric is breathable allowing moisture to be wicked away from the skin helping to keep Emily from feeling clammy. I mention this because Emily wouldn’t leave home without these imperative layers under her sports wear.

 

 

The team will be in royal blue ParaQuadNSW jerseys. We are starting in the Gold Charity wave at 8.20am. If you see us  – cheer!!

As members of ParaQuadNSW both Emily and Cobie have been awarded funds to continue their studies, a integral link to rehabilitating after a traumatic spinal cord injury.

 

 

Both Emily and Cobie will be pushing to Bondi using their Freewheel attachment. It allows them the confidence to tackle terrain without worrying that their front casters will eject them if they catch a divot on the course.

 

 

Our last training session was slightly soured as our coach was noticeably absent due to a grooming appointment.  Unfortunately Beastie can not compete on the day so we will have to manage without her barking instructions and infectious enthusiasm.

 

 

If you would like to sponsor Emily on this epic challenge to raise awareness and funds for ParaQuadNSW, an organisation that supports people with spinal cord injuries in their community,  please click here for details. Thank you x

ParaQuad.org.au   Click here

I/O Merino underwear layers    Click here

Freewheel from Able Rehabilitation Equipment   Click here 

See you there! Sunday 9th August 2015

Spreading awareness of the resources required to support people in the community with SCI. #City2Surf

Coach Beastie laid down the law this weekend. She says there’s to be less chatting and coffee drinking if we are going to make the City2Surf.

The girls are pushing themselves with the 14km City2Surf course in every sense of the word.

Emily and Cobie would like to raise money for ParaQuad NSW, an organisation that supports people with spinal cord injuries (SCI). ParaQuad NSW have assisted Emily in her return to university and independence. Both Emily and Cobie aim to assist ParaQuad in spreading awareness of the resources required to support people in the community with SCI.

See Emily’s Everyday Heroes page here Thank you.

 

 

Raising funds and awareness for the differently-abled helps carers too! #City2Surf

I signed the form that Emily assertively presented to me and realized I was; chief supporter, responsible carer, sandwich maker and jelly bean monitor for her City2Surf team on Sunday, August 9th, 2015.

From Hyde Park the course is 14 km through to the finish line at Bondi. I have not been involved in previous races but you can’t live in Sydney without knowing about the City2Surf Heartbreak Hill. Discard any visions of weeping lovers as they are dumped along the wayside or broken-hearted couples clutching their heaving chests as they wave tearful, red-eyed farewells. No, Heartbreak Hill threatens the thigh and calf muscles of all the participants as it has a false summit. What appears to be the hill-top is actually only a corner on a continuing rise. The undulations that follow through residential streets keeps everyone literally on their toes!

As the ink dried on my signature I rushed to Google the race site. I had to deep breathe through my alarm as I read…… Elite Wheelchair Athletes: This Start Group is for elite wheelchair athletes only. Athletes must be in a racing chair to compete in this Start Group and who will aim to complete the course sub 38mins.

38mins!  SUB 38mins!

Let’s go back to the beginning – Emily wants to raise awareness and funds for ParaQuad. An organisation that supports people with spinal cord injury in the community. As a ParaQuad member Emily could apply and was granted a scholarship which she put towards her University fees. Returning to University was an important milestone within Emily’s recovery goals.

ParaQuad supports life choices after spinal injuries. It also supports carers because if it aids Emily, it aids me as her full-time carer. With increased  resources and support Emily is empowered with more independence heading towards a positive future with opportunities.

On our first training session we averaged 5 km an hour so we should finish the City2Surf course  in 3 hours. Add in a sandwich and jelly bean pit stop and maybe a finish time of 3.5 hours would be more realistic. Does that help put the elite wheelchair athletes into perspective!

Emily and her mate Cobie are determined to push their way through and enjoy the success that comes with a challenge. If you would like to support them and their carers by donating to ParaQuad please see their everyday heroes site here

 Thank you from Emily, me and our track coach – The Big Black Beastie!

 

 

 

Life Reimagined – An exhibition running till June 30th

Cover girl Emily advertising Imagine Me – a project that allows people with spinal cord injury to express themselves through a self-portrait created using new photographic technology.

Imagine Me project artist and facilitator Sue Murray has worked with each individual, even if artists could only use a mouth stick they were able to control aspects of the camera. Sue said “It’s great to be around people who have overcome disability – it’s very inspiring. It’s what you can do and not about what you can’t do – this is about enabling and empowering people”

The collection of images is as varied as the individuals; from Game of Thrones, words from the Beatles and one portrait  inspired by Dutch painter Johannes Vermeer’s Girl with a Pearl Earring. Each portrait has a paragraph from the artist, the combination of words and picture give a glimpse of the person who created the work of art.

The images displayed in this exhibition are all inpactual, some are reflective, all are beautiful, many reveal the unexpected and also the artists cheeky sense of fun. I felt honored that each participant had let me see something special, just briefly I was allowed an insight into their inner strength, their imagination and their personalities shine through for all to see.

The exhibition runs till June 30th at the Dougherty Centre, 7 Victor Street, Chatswood.

Monday to Friday, 8.30am and Saturdays at 11am.

 

Healthy eating takes me to a raw place!

I admit I could be a carbohydrate addict. I could quite happily live on fresh breads, home-made pasta, buttered potatoes and sticky rice but especially soft bagels, warm cakes and chewy cookies. I have been weaned off excessive carb consumption by nutritional education and my tight jeans!

I have always told my children “everything in moderation” so have to take my own advise when considering carbohydrates especially with Emily’s calorie allowance post SCI. I also told the children they “would get scurvy without fruit and vegetables!”  They were the only kids in pre-school who quoted that line!

So this week when Emily suggested a raw cake I had to give it a go.

Carrot cake with cashew cream frosting: Adapted from The Rawsome Vegan Life  

Cake:

2 large carrots, peeled and shredded
1 1/2 cups wholemeal flour
2 cup dates  – soaked in water overnight
1/2 cup dried shredded coconut
1/2 teaspoon cinnamon
2 cups chopped pecans
2 or 3 tablespoons maple syrup

Not the most appetizing of cakes at this stage……dates and flour blended….”Keep calm and carry on”  ….

To make the cake: Shred the carrots, set aside. Blend the soaked dates into a puree, add the flour. Stir in the carrots, coconut, cinnamon, chopped pecans and maple syrup.

Looks more promising….

Cashew frosting:

2 cups cashews –  soaked in water overnight
1-2 tablespoon lemon juice
2 tablespoons liquid coconut oil
1/3 cup maple syrup
Water, as needed

To make the frosting: blend all ingredients with a high-speed blender until smooth, adding as little water as possible. Set aside.

The cashew frosting is truly delicious!

Assembly: Press half the cake mix into the bottom of an adjustable spring-form pan. Then spread on 1/3 of the frosting on top. Put it in the freezer until the layer of frosting is hard. Then press on the rest of the cake mix and 1/3 frosting on top. Back into the freezer. Take it out of the pan when solid and use the remaining frosting to cover, use pecans to garnish.

 I felt healthy making it and even healthier eating it!

Emily and I are on the telly – 5th March 2015 -Channel Ten News at 5.20pm promoting the Strength 2 Strength program for carers

The Strength 2 Strength program is specifically designed for family members of people with spinal cord injury:

I remember in May 2012 I was invited to this relatives meeting at Royal Rehab, Ryde where we were asked to; relax, share our story and discuss resilience, discuss being actively in charge and discuss the source of our strength. I admit that my heartfelt reaction was to; take a double shot espresso, bottle of vino, pack of fags (I don’t smoke) and wail throughout the two-hour session. A friend gave me sound advice when I told her of my plan –  “Absolutely all of the above”

Being the compliant person I am I turned up for the Strength to Strength session to find that the group initially was ME! The  Social Worker would have probably cancelled if she had any prior knowledge of my ability to analysis and talk!  We established that a group can officially be any number over one, so we were official.

The Social Worker asked if I would like to follow the program which incorporated a relaxation tape for twenty mins and an assessment and discussion of my strengths. I felt terrible as I could have saved her the bother of struggling with the 1970 cassette recorder. The ‘Mission Impossible‘ tape whirled into action in an asthmatic fashion and the gentleman’s soft voice asked the assembled group (me) to deep breath and relax. Within a nano second I was peacefully oblivious to the relaxation instructions as I was fast asleep. I only had to be asked to sit down to accomplish total relaxation let alone the superfluous instruction to close my eyes. Spinal cord injury rehabilitation as a carer is exhausting.

After rudely waking me from my relaxed state I was set the task of picking my strengths from a pack of cards so that we could discuss. I shuffled the large stack and focused on each word. I looked at the first card ‘sensitive’ I paused to consider and decided “yes” I probably am. Then I picked up the next card ‘caring‘ and thought “yes” I’ll pick that as well. Again and again I picked up the cards; co-operative, resourceful, creative, loving, supportive, independent, forgiving, open, honest, organized, thoughtful, communicative, very communicative! Within a short space of time I’d collected nearly every card into a large pile of glowing, strong attributes while the social worker looked at me, thinking “just as well no one else had come along to share the pack of word cards.”

The Social Worker looked at the array of cards now in front of me as my identified strengths and with just the slightest tilt of her head and merest hint of an eyebrow raise she said “It is very positive to see how many strengths you see in yourself!!”

She asked why I had discarded the words in the smaller pile of cards. The discarded cards included the words happy, positive and peaceful. These words evaded me, I had to explain that through honesty with myself and others I can communicate and achieve practical outcomes, I can fill in forms, get quotes for house modifications, care, love and support Emily but peace? I strive to find peace in our current situation. I need to accept Emily’s disability fully, to accept her functional loss, I have to release the guilt I have if I am not continually present at her side, I have to reset multi level life buttons so that I can be at peace while Emily develops independently. I am aware of my personality traits and I see my goals but understanding the path does not ease the exhausting journey. I am dragging my heavy heart; my heart is not as accomplished as my head in addressing this new post February 2012 world that we find ourselves in. My heart still bleeds whatever my head thinks or comprehends.

The Strength 2 Strength program was five weekly sessions. My group did increase and incorporated  a variety of carers, we shared and listened to each other. Far from being burdened with other peoples grief I regained a sense of perspective. Everyone was struggling to cope and care within individually traumatic events. I realised that I needn’t be stoic, my peers had strategies and experiences that empowered the group. So a contemporary support network developed, nurtured by a professional Social Worker within is structured program.

By session three our group confidentially revealed our new-born strengths; anything good or positive that had come out through our experiences. I realised I still had Emily, she was alive, I could cope and I was managing, it was also easier as a group to problem solve issues than individually. Talking was therapeutic, we encouraged each-other; re-emphasized the importance of being ourselves, taking time for ourselves, recharging our batteries as our family members were dependent on us being healthy and fit; mentally and physically.

The program set out:

1. To provide information on ways of managing the range of feelings, changes and challenges after a family member sustains a spinal cord injury.
2. To provide information on services and supports that you can access now and in the future.
3. To provide an opportunity to meet with others who are in a similar situation and share your story and experiences.
4. To assist you to build upon your exciting strengths and resilience.

At our final meeting it was obvious the group had forged a bond, a bond that continues and unites us still and into our futures.

As for Emily’s psychological healing  – while at Royal Rehab, Ryde there was a resident psychologist scheduled into her weekly routine, Spinal Cord Injuries Australia (SCIA) have a sympathetic peer support group that visits. It can’t be overemphasized that psychological support is imperative.

We have been home now for just over two years I hope my strength and resilience shower Emily with energy that facilitate her independence outside the four walls of the house and back into life. Strength 2 Strength was a great foundation program for our growth towards our new normal, our new future.

What’s for dinner? Nothing in the larder? Eggs…….

Take…….

25g butter and melt in a pan, stir constantly with wooden spoon.

Stir in 30ml of flour and cook for a minute.

Add 150mls of milk and stir until sauce thickens and is smooth.

Stir in 100g grated cheddar cheese,  pepper to taste.

Remove from heat and allow to cool. I stirred in 30g grated Parmesan cheese too!

When sauce cool add 4 egg yolks.

Whisk 4 egg whites until stiff then fold into cooled sauce with a figure of eight pattern with a metal spoon. Spoon the lightly stirred mixture into a prepared souffle dish and bake for 32 minutes at 190 C/ 375 F or Gas Mark 5.

Serve with salad.

Done – Yum!

Good food and exercise …research aims to establish and implement programs to aid SCI health.

We all know that good food is important …..lots of green vegetables, salads and fresh fruit.  I met an aged tortoise that reminded me of that fact recently at Singapore Zoo but there is another important factor to human longevity – exercise!

“Exercise” You say?

The importance of exercise and the best ways to implement activity are being addressed in a UK Department of Health Study. A lead researcher at the University of Bath, Tom Nightingale, explained: “One of the best ways to reduce the risk of chronic diseases is to become more physically active, but for wheelchair users with spinal cord injuries achieving this can be more complex. We want to understand more about the impact of regular moderate intensity-exercise for these people and to devise new programmes that can help promote physically active.”

There are around 3 million wheelchair users in the USA and approx 5 million wheelchair users in the European Union with probably over 12 million wheelchair users worldwide and as a result of inactivity lifestyle diseases such as Type 2 diabetes and heart disease are more likely to occur in this vulnerable group and at an earlier age. Promoting exercise with resulting better health in this large group would have a beneficial impact; physically, mentally and economically.

There is a tendency to reduce exercise if it causes pain or if exercise just gets too arduous; finding the time, having a carer to assist or just having local accessible activities. I want to address this issue with Emily, using exercise to break the unhealthy relationship between disability and weight gain.

Emily and I have found that exercise has to be a scheduled in our day. We aim to enjoy our yoga, stretch or swimming session because we have ample time allocated. The equipment we use is readily available in all good sports shops.

Emily and I have adapted particular sports to accommodate her abilities. It takes trial and error but we have enjoyed the process and we both benefit from our efforts.

We keep our program simple and our aims are similar whether swimming or enjoying  a yoga session;

• Full range of motion in all joints, start head and move to toe.
• We stretch the whole body, addressing the body as a complete entity.
• Deep breathing, inhale and on the exhale extending a stretch
• Strengthening without tiring her overused muscles
• Make use of parks with accessible pathways to exercise outdoors
• Maintain a variety of activities; ice skate, hand cycle, bowling, sail-ability
• SCIA Walk On Program
• Keep it fun

Reducing the risk of Type 2 diabetes and heart disease is a priority, diet and exercise are pivotal to achieving that. I welcome the UK research as it is seeking to gain statistical evidence to devise programs that help inactive people participate in exercise.  

Basically diet and exercise are a duo that have to be constantly considered in our every day schedules. As a carer I benefit as much as Emily from healthy eating and lots of exercise. 

 

Life rushes in as coping with SCI becomes manageable

Recently I was rear ended in my car! I was minding my own business, slowing behind a vehicle that was indicating to turn right when that screech of braking wheels makes your shoulders rise in anticipation of the thump, a glance in the rear view mirror confirmed a Masda was in my truck.

The unperturbed car ahead of me turned right and I pulled to the left to exchange insurance details with the Masda driver. No-one was injured so really a little bent metal wasn’t going to upset me. The at-fault driver was a nice man, he apologized, shook my hand and then he had to get on with calling a tow truck as his car had its nose broken, the bonnet resembled the beak of an eagle; hooked.

I returned home to phone through my insurance claim; the car was booked into a body workshop for a quote within 24 hours, a very smooth operation and I feel stress free regarding the unfortunate incident. I don’t relish the body work being done as I’ll have to drop the car, catch the bus home and be grounded till the job’s done. It takes up so much time but as I mentioned it’s a well rehearsed procedure from the insurance people.

After that eventful morning I put the kettle on and fetched the dog who was in the garden. She ran up the stairs and popped herself to bed. Emily pointed out that the dog was limping. I called Beastie to walk around the kitchen table and sure enough she was displaying a reticence to put her right hind paw to the floor. I lifted her leg to examine her pads, there on her ‘palm’ was a large wound. It looked like an oyster shell cut from rocks at the beach. The dog let me poke and stroke her so that I felt sure this was her only injury. The cut wasn’t bleeding so I patted her and she went back to her task of lying down.

After dinner I called the dog to sit with us to watch TV . I touched Beastie’s left hip and she yelped. A high pitch yelp. I lifted her on to the bed to examine her more thoroughly. I could only detect the cut paw pad but I couldn’t settle as I hate that the dog is unwell, yelping and not putting her leg to the floor. Her hind leg is being held like a ballerina,  the paw is pointing in ballet position two, poised to dance lightly on her toes.

I feel certain that the Beast will be fine in the morning, she is eight years old and behaves like a puppy. She is very boisterous so always at risk of injury, she isn’t a decorous dog! I suddenly realised that I was churningly anxious about Beastie and just vaguely annoyed about the car.

I mention the car crash and Beastie’s injury for a reason as it confirms that after the acute trauma of SCI, life returns and here I am some three years later with everyday issues that have to be addressed; a poorly dog, a smashed car, searching for a holiday, On-Trend clothes shopping, seeking ingredients for recipes and early morning cycling – all contributing to my everyday. Be assured life returns after SCI.

 

 All better now!

On a fine night #stgeorgeopenair cinema is a delight for wheelchair users and their carers.

Emily and I were lucky enough to be invited to the open air cinema on Mrs Macquaries Point. I was reticent as I anticipated parking mayhem, a long walk/push to the venue. I expected issues with seating and difficulty accessing food and drinks. How wrong could I have been…….. I have to share that the evening was one of the most special events that Emily and I have attended.

My reservations were completely unsubstantiated. We parked easily and walked a short distance to the entry ramp. Although the ramp is steep I can’t start complaining about the geography of the city! We arrived to find that our seats had been reserved with a space to accommodate Emily’s chair!

We were directed to the bar so thought it rude not to have a cocktail – delicious! Everyone around was eating wonderfully aromatic plates so we joined the restaurant queue. The counter service was fast, the choices interesting with the food swiftly delivered. We had plenty of time to relish our food and order another drink.

Our hosts were exceptionally good company and we all agreed our evening was aided by the ease in which the event was organised. It was simple, streamline and efficient. We sat ready for the screening of our film totally entranced by the Sydney Harbour Bridge, the Opera House and the huge bats flying through our view of the city.

There is something extraordinary about experiences outdoors, our senses were heightened. Watching our movie on a warm summer evening, we were aware of the venue as it embellished the on-screen drama. On a fine night the open air cinema is a delight!