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.

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. 

 

Emily’s second hand surgery has been easier, let’s hope it’s as successful!

I have to publish this post before I forget how we have managed with Emily’s cast. The operation to address tenodesis was on December 9th with the original bulky white cast being replaced by a lightweight purple cast the following week. We were on the bus into town minutes after the vividly coloured, ‘punching fist’ cast had dried, well, it was the week before Christmas and a girl has to shop!

This is the second Christmas that Emily has been in a cast because surgery and rehabilitation can be scheduled during the long university summer break. It isn’t the best season to be wrapped up to the elbow as the heat does induce additional finger spasms with some neuropathic pain but these discomforts are short-lived.

This second surgery has been less arduous and draining because we had realistic expectation following our experience of deltoid to tricep tendon transfer in 2013/14. The cast has been easily accommodated in the shower with the help of a bin liner and sellotape. It didn’t dent our Christmas cheer or quash our New Year’s celebrations.It hasn’t impacted on our activities because we scaled down our diaries or is our nonchalance towards this purple fist cast because we accept Emily’s post operative immobility as we anticipate her future functional gain?

Emily has endured the needles, examinations and prodding that surgery involves. She has merrily eaten turkey, bubble ‘n’ squeak and sausages with her single left hand. She has lifted and balanced a chilled glass of water, wine or champagne with masterful expertise over the holiday period so it poses the question “Why has this surgery been so much easier?”

This surgery has been easier because there was less fear, this second procedure was relatively straightforward and many surgical and rehabilitation aspects are repeat experiences. With a known entity comes placidity and patience. Recovery is welcomed with restraint and tranquility, nothing can be rushed or hurried, best to accept the inconvenience as a speed hump and slow down.

When a repeat experience leads to a positive functional outcome we are more likely to be consensual, compliant and co-operative as we acknowledge an anticipated goal. When  surgery is an accepted  part of the journey to increased ability there is minimal criticism because we value the consequences so highly. Basically I am less able to critic this event because it is already becoming our Christmas norm, a reality that isn’t feared, it isn’t as impactual as we’ve adapted, calmly anticipating its value to Emily’s dexterity and capability. If I don’t mention details now I will forget as I recall less and less minutia as I accept our circumstances, year on year.

Emily has coped admirably and held her cast aloft like a leader rallying her troops forward, encouraging us to follow her into Woolworth’s, onto the bus or up Spofforth Street to grab a sandwich and a latte!

We visit the hand clinic tomorrow. These visits are unceremonious, amenable and relaxed yet the surgeon’s skill is so evident, Emily gains through this specialist dedication and proficiency. There is one facet of medicine that will always prevail, our thanks to the nurses, doctors, surgeons and physiotherapists, we are very grateful and I would never forget to mention that.

Progress this year shows Emily blossom into post trauma independence and I celebrate !

Today is the anniversary of my 1st blog. I thought it fitting to reflect on the year; Emily’s progress, the subtle changes that experience has delivered to Emily and me, the evolution of our separate short and long-term goals.

Emily has progressed enormously as when catastrophe strikes the individual has to psychologically address their physical change, accept their trauma, devise coping strategies and reassess their short and long-term goals. It’s the individuals journey through their own mental and physical injury towards healing.

I had my own journey overcoming parallel issues to Emily but as her carer, her mother. I could assist her in the recovery process but only she could write the agenda, she set the goals, I expedited her aspirations, I eased her hike to health by sharing the administrative burden.

My part in my daughter’s recovery was always transient, I had to subtly withdraw because her life’s course is her own, her ability to have a full, productive, active life is inherently personal and driven solely by Emily. The greatest dis-service to a person with a disability is quashing their independence. I revel in Emily’s growing confidence, her  post trauma personal development, her objective growth. Her emotional and psychological resilience addressing change; change in her appearance, her relationships, her social life and her altered ambitions.

I have distanced myself gradually because we are not living a shared life. I have my own inclinations which I have to pursuit. I was delighted to spend twelve days in Barcelona recently, leaving Emily alone. I left for Europe secure in the knowledge that Emily was competent, assertive and informed in all aspects of her need. The dynamics of our relationship have always centered on nurturing Emily towards physical, emotional and social independence – my time away consolidated Emily’s adaptation, independence and well-being.

I celebrate this past year as Emily has managed her stressful transition from rehabilitation to home, from patient to student, from reliant to independence. She has shown mature insight as she set achievable goals,  she has mastered new skills within safe environments, she manages care delivery and student demands gently which engenders strong working relationships.

I have gained enormously witnessing Emily’s graceful, educated yet assertive approach to life so it is a delight to report on her ability, her strength of character, she shows good humor and love everyday – no ounce of dissatisfaction, anger or belligerence.

Traumatic injury is heartbreaking but with time, care and resources individuals and families can recover. The recent breakthrough in cell transplantation and the success of epidural stimulation treatments engenders great hope for the future. Although research and development fosters hope we must take care to live now.  That is my message one year on; that Emily is living, she’s back at University, she’s on the bus, she’s back up at the bar ordering a cocktail, she’s travelled in Australia and Asia and she’s independent.

 

One year on I can proudly report that Emily teaches me everyday caring!

Twelve months on Beastie is the singular unchanged being. She remains active, hungry and completely devoted !

 

Science is to SCI what Picasso and Gaudi were to art and architecture – inspired!

I was in Barcelona recently at the Picasso museum, impressed by this revolutionary artist. He experimented with ideas and design, colour and shapes. He altered our perception of objects and our interpretation of faces and bodies. He had the original thought that comes to geniuses.He reinvented art and it’s form.

 

I loved Gaudi’s interpretation of design and architecture, very tangent to the thinking at the time. It made me think about medical research and the science that needs to be encouraged to overcome Spinal Cord Injury (SCI). To understand the complexities of the central nervous system will take an outside the box brain. To piece the medical minutia together to be able to rectify severe spinal cord trauma will be phenomenal yet fundamentally life changing for quadriplegics and paraplegics worldwide.

 

I view the revolution in art and the progress in architecture just like modern-day medical development. It must be encouraged and funded as sooner or later some genius will understand the complex structure and treatment for traumatic SCI. We have to have faith in the talented and encourage their thoughts, develop their ideas as they are our future.

Just as I was about the publish my piece above….. the news exploded with: Man With Severed Spinal Cord Walks Again After Cell Transplant. 

The man paralyzed for two years is walking again, albeit with a frame, after a transplant to his spine. The treatment, to be published in this month’s Cell Transplantation, has been under discussion for a while, but has only now shown success.

Olfactory ensheathing glia (OEGs) surround olfactory axons, the nerve fibers that conduct electrical charges from the nose to the brain to allow us to smell. What makes them of interest to spinal patients is that OEGs maintain their capacity to promote new neurons into adulthood.  These neurons usually survive just six to eight weeks, and require constant replacement if we are not to lose our sense of smell. OEGs keep forming paths for new receptor neurons to transmit their messages.

This capacity for regrowth has inspired spinal researchers frustrated by the fact that the mammalian central nervous system does not regenerate axons. The idea is that if OEGs are transplanted into the spinal cord at the point of injury, damaged axons will start to restore themselves.

Mr. Fidyka was selected as the subject for the OEG transplant trial, a joint operation between University College London and Wroclaw University Hospital, Poland. Cells from one of his olfactory bulbs were cultured for two weeks before being transplanted through 100 micro-injections around the scar site.

BBC TV current affairs program Panorama was invited to film his response to the treatment. At first, despite five hours of exercise, five times a week, Fidyka showed no response, but at the three-month mark he noticed that his left thigh was putting on muscle. After six months he was able to take faltering steps with the assistance of leg braces and parallel bars. 

University College’s Professor Geoff Raisman, who discovered OEGs, described Fidyka’s small steps as “more impressive than man walking on the Moon.”             Adapted from Stephen Luntz report.  

My mind is dwarfed by this inspired cell transplantation research, development and implementation. As I drifted around Barcelona musing on art and architecture, musing on original and unique human ideas and interpretation  – advanced medical progress was actually happening across the world in Poland. I am delighted, amazed and hopeful – this medical success story could change the future for SCI wheelchair users !

 

Barcelona’s Gaudi – Inspired by faith

Returning to Royal Rehab to swim or should I say aquatic physiotherapy!

In 2012 Emily was resident in the old rehabilitation building, at the top of the hill on Morrison Road so the newly opened Royal Rehabilitation Unit based in Ryde is a palace in comparison.

We arrived at Royal Rehab (RR) for some outpatient swimming sessions. Emily adores the warm water, just the feeling of freedom from her chair, the ability to glide weightlessly and relax. Relax…. that is until the therapist approaches her with the laminated sheet of exercises!

The RR Outpatients Department state ‘Aquatic physiotherapy can facilitate strength, range of movements and function through the therapeutic effects of warm water. The sessions are conducted by a physiotherapist to assist, instruct and demonstrate the exercises.” The program is designed to enable continuation of the exercises independently at our local pool.

Emily is so enthusiastic about hydro-therapy and the benefits of water based exercise that she was one of the first outpatients  to join the swimming program offered from the new Ryde facility. We have been to the hydrotherapy pool at The Ian Thorpe Aquatic Centre which is manageable. It is difficult to gauge a time when the hydrotherapy pool is open to the public and quiet. Children are delightful but splash enthusiastically, not idea for Emily’s  gentle glide with the aim of weightless relaxation. No matter we persevere!

Emily and I have found that it is only with practice we really finely tune our activities. To have the opportunity to practice all aspects of swimming from; dressing and undressing, using differing changing room facilities, SPC management and identifying practical goals for Emily in the water is  enormously beneficial. We always warm up afterwards with a coffee, no practice needed there! As we become quicker and more exacting we can incorporate swimming into our day without it taking over the whole day.

There are admission criteria for this outpatient program;

• Live within the Northern Sydney Area Health Service district
• Aged between 16-75 years
• Referral and medical clearance from GP to participate in aquatic physiotherapy.

I hope that RR can open the pool to SCI outpatients at weekends as such a wonderful resource. Our only real issue is leaving the new RR building as we always bump into so many great friends and stay to chat!

Emily snorkeling on The Great Barrier Reef

P.S. Get your swimsuits ready as more beaches are providing easy access to the sea for wheelchair users. Additional information about beach chairs for wheelchair users is posted in my TRAVEL / Australia tab above.