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Archive for the ‘Inspiration’ Category

Futureproofing – Part 1
I began writing these posts for my children. I wanted to share with them the things that we weren’t likely to talk about over dinner, or at family gatherings or just hanging out. I wanted to tell them how special they are to me, how essential to who I am, how they have shaped my life and to thank them for letting me into their lives as they grow and change.

So much has happened in the five years that I started writing. Weddings and grandchildren; better management of my pain and continued improvements in my walking and gait; shifting to a home near a beach in preparation for my husband’s looming retirement. But most of all, I have discovered a growing determination to look time squarely in the eye and to fight its ravages – I will not go gently “into that good night”.*

Futureproofing has been on my mind for a couple of years as I get older. Where to retire and when to relocate? How to support family, and how to ensure never to become a burden in any way to family? How to maintain my upper body strength and minimise muscle and joint disintegration? How to keep improving my walking gait? What does quality of life mean to me? What will make my heart sing?To sum up, how to live a full and satisfying and even exciting life?

“Old age should burn and rave at close of day;
Rage, rage against the dying of the light.” – Dylan Thomas*

First thing to tackle has been to find a place where I can take my stand. No more coping with Wellington’s cold winters. I didn’t think I could manage one more. The decision to move was difficult. We have a son and daughter law with two little ones in Wellington, a daughter and son in law with a toddler and another one on the way, and a son and daughter in law in Auckland.

What was important in deciding where to live? It had to have warm summers, be near a beach, be accessible to family, a place to tempt grandchildren, a place to welcome and draw people to, a place to retire to. And, we realised, a place that my husband could work from until he retired. I wasn’t worried about proximity to medical services. My instincts tell me not to make it a problem. It’s on my radar, but barely.

Our kids were right to advise us not to decide to live somewhere because it was close to one or other of them – the world is mobile and our kids may not stay in one place. We have moved our kids backwards and forwards between cities as work dictated.

So here we are on the Hibiscus Coast. Where people come on holiday. Thirty minutes from the CBD (don’t drive in peak hour traffic) yet a world away in culture and stress… And house prices. We up-sized, got a better quality house, more land and we are 600 metres from a fabulous and mostly empty beach. For pretty much the same price as the home we left in Wellington.

Oh, how I love this beach! In summer I wheel down in my wheelchair with my crutches clipped on twice a day. At low tide so I can walk the length of the beach. That’s my rehab and therapy. At other times I wheel down then walk into the surf and just stand there as the waves sweep over my thighs and higher. My heart sings! The locals have come to know that when they see my wheelchair at the top of the boat ramp I am somewhere on the beach.

The locals, my neighbours, are all here for the same reason we are. They love the beach. All summer long people wander along the roads that lead down to the beach wearing only their swimming togs with a beach towel slung over their neck, or round their waist. Some carry a body board or surf board or paddle board. My husband is not alone in pulling his kayak on its trolley along the 600 metres to the beach. People of all ages and all unselfconscious. Oldies with their wrinkled saggy bodies, teenage boys with rippling abs, girls in bikinis, men with their bellies hanging over their board shorts, walking in groups or singly. Greetings and waves to friends and neighbours. It’s wonderful. Acceptance all round.

It’s like going back in time. We know our neighbours. I call them if I need something while my husband is away. They ask me for favours. I have good friends here.

My daughter and son in law come here in the weekend to recharge. We play with our grand daughter. She loves it here too. Our neighbour lets us use her swimming pool. Our grand daughter goes down the road to the play area either sitting on my lap in the wheelchair or pushing herself on her trike, speeding down the slope.

When our son’s family stays with us everyone piles in too, bodies in every room.

As I write this I can hear the ocean, my friend’s dog barking, some birds singing. I can see the palm fronds rippling in the slightest of breezes, huge hibiscus blossoms, tropical greenery. I can feel the tiny edge to the temperature that tells me that Autumn is coming.

This place is everything I wanted as I contemplate a future to look forward to.

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After writing the post about the link between managing spasm and improving walking, I continued thinking about how important it is to never, never give up. No matter the obstacles, challenges, frustrations, fears never give up. I had this image in my head of enormous blocks that are seemingly unsurmountable …

Never, Never Give Up

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OR: FINALLY, A MEDICAL EXPLANATION HOW THIS INCOMPLETE PARAPLAEGIC’S WALKING CONTINUES TO IMPROVE

I came across an article from the University of Washington that blew my mind. I am excited, delighted and vindicated.

Some highlights:

Spasm caused by spinal cord injury can prevent voluntary movement of weak muscles. Sounds pretty simple. Except it’s not. Spasm can be complex and the cause, other than the obvious one that it is caused by sci,can be difficult to identify. Pain that is not felt can cause spam, so pain killers can help reduce spasm. Stretching can help reduce spasm. Weight-bearing and walking can reduce spasm. Good postural alignment whether sitting or standing can replasma spasm.

I’ve already learnt this through experimention. I take a cocktail of prescription drugs from muscle relaxants, to pain killers, to anti-epileptics, to a neural enhancer. I exercise five days a week at the gym under the supervision of a personal trainer who creatively extends my range of movement and improves mobility through gentle exercises that target weak muscles, and finds ways of reconnecting neural pathways. I stretch at regular intervals during the day.

Here’s the eye-opener though.Spastic muscles not only inhibit weak voluntary opposing muscles, they also take up residence in synapses and axons and make them unavailable to voluntary muscles! So get rid of the spasm, and nerves can reconnect to voluntary muscles! That goes a long way to explaining rapid improvement in my walking over the last two years – since my spasm was finally under control.

It still doesn’t explain why muscles that had no movement, have gradually become enervated, suggesting that the central nervous system can repair itself!

So never, never, never give up!

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I was inspired and uplifted when I heard someone special to me say (I paraphrase) how wonderful it is for someone to see you as you really are, yet love you anyway.

I have been looking for some way of expressing this:

I had arrived at this after experimenting with:

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One year ago today, electrodes were applied to my lower left leg in an attempt to flex my ankle sufficiently to swing my left leg through in a normal gait pattern.

I had been using a dictus band to keep my left ankle flexed but I had to go up on tip toes on my right leg, and swing my left leg around, rather than through, to walk. I was causing damage to my lower spine and right hip, increasing spasm in my right leg, putting my entire body out of alignment – but it was better than being in a wheelchair.

The results from using the Odstock have been amazing! Initially, it was exciting just to be able to bring my left leg through straight rather than swinging it around and through. The Odstock electrically stimulated my muscles to flex at the hip, knee and ankle. The flow on effects from being able to walk like this have been profound. My spine is straightening, my posture has improved, I stand straight and I rarely experience pain in my right hip. Muscles on my left side from my core down are becoming enervated and are getting stronger.

(An earlier post, Wired To Walk, has a video showing how the Odstock works.)

With the help of a personal trainer who seizes every opportunity to reconnect muscles, I have developed lower abs, internal obliques, glutes, quads and knee control.

Over the last month I have been able to rotate my left hip. Now this may not sound like a big deal, but it has taken my walking to new level. My left hip flexor used to collapse, but now my hip extends, rotates, and my left leg is in a good position to take the next step. (Another plus is that as my internal obliques strengthen, I’m getting a waist!)

My balance is still awful, but the downward pressure I put on my crutches is much, much less as my legs take more and more of my weight … Fewer shoulder problems, twisting of joints, and maybe an easing of carpel tunnel syndrome, as well as walking faster and further. I still have to do lots of stretching – it’s like keeping the muscles oiled and moving smoothly.

So it’s been a good year …

Reach For The Stars

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As my daughter’s wedding approaches, and I see the care with which she and her fiancé choose their music, I am reminded how music is directly connected to our emotions.

Music can stir men to battle, soothe a baby to sleep, arouse passion, unite us in patriotism, make us dance, make us happy, make us sad, recall mamories, send people into trances, help us focus, stimulate dreams, motivate, send us to another time or place, build images … It seems there is nothing that music cannot do. It invades our souls, plays with our emotions, weaving through our lives leaving marks, and marking milestones.

I have also been exploring images for music. I’ve loved every moment of it. Here are some of the results:

Music, happy pieces of heart

Music Sets My Heart On Fire

Music Sets Fire To My Soul

Music Is A Whirlwind of Emotions

And a calligram I have published before, but is relevant in this context:

Lost In The Music

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My mantra “determination, persistence and commitment” would be just words if it weren’t for The Dictator. The Dictator shouts and yells, he snarls and barks, he pushes and shoves, he cracks the whip. The Dictator gets me to the gym every day, he makes me go where I’m scared to go, he makes me stretch and exercise when I’d rather go to bed or watch TV. The Dictator calls me names and relentlessly keeps me moving forward. The Dictator denies temptation, keeps the troops in line, roots out subversion and keeps me on the straight and narrow. Yet The Dictator is not abusive and does not swear or curse. The Dictator says “DO IT” and I do.

What happens if the Dictator crumbles? If the voice cracks or is lost? Then the troops slow down, lose direction, become confused. Life becomes harder, the world darker.

That’s when I need inspiration from outside. Someone to listen is best, or maybe following the faint memory of routine brings me into contact with someone and I rediscover my self.

The world can be hostile when your mobility is impaired. Simple things can seem impossible. Anxiety and panic can immobilise you. Negative thoughts can creep in and overwhelm the optimistic, confident self.

I need some means of rediscovering the inner voice, the voice that gives the orders, pulls the troops back into line. I listen for an echo or a whisper “Do it”, or fake the orders until they become real, and the Dictator returns. I need the voice that says “DO IT”. I need The Dictator within.

That’s why routine is so important, particularly going to the gym. There, not only do I experience all the benefits of exercise and socialising, but that’s where The Dictator’s voice is loudest. Exercises that take me to the edge of what I can safely do, that test and recruit physical weaknesses, and that make my brain work out harder than my body, need the voice that says “DO IT”. It’s a challenging environment but it’s also a safe and happy place. That’s often where I’ll find My Dictator.

The Dictator

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