Tag Archives: aphasia

Happy Ninth Birthday, Stroke a Chord Choir!

Stroke a Chord Choir is celebrating nine years of educating communities about stroke and aphasia – and of bringing joy to members and audiences.

This unique choir of stroke survivors with aphasia (loss of speech after stroke) began in 2010. The choir is supported by Maroondah’s Metroaccess worker and the Eastern Regional Communication Access Network speech pathologist. The choir began after Wendy Lyons, a stroke survivor herself, noticed that some people in her stroke group couldn’t speak, but could sing. The choir is conducted by a qualified music therapist and has had ongoing commitment from talented and passionate volunteer musicians.

Though remaining unfunded, the choir has hit many high notes, including a documentary film, several pieces of research, a book of members’ stories, as well as numerous performances including 8 large annual concerts. The latest achievement was a combined choir performance at Hamer Hall for an audience of 2000 people.

The choir has inspired several similar “aphasia” or “neurological” choirs to form in Victoria, Australia and even worldwide, with a Facebook page “Aphasia Choirs go global”, which is co – hosted with international specialists in music, speech and the brain.

Listen out as this small choir makes a big noise – singing its way towards a decade of inspiration!

Craig and Gonda’s stroke story; our journey so far

I am Gonda, Craig’s long term partner and this is our story of loss, grief, acceptance, hope and love.

Craig and I had a whirlwind romance. We met in the Melbourne Casino almost 16 years ago. Following a lunch date the next day, we spent the whole week together. Craig lived in Darwin (NT) at the time where he owned a manufacturing business producing solar hot water systems and water tanks. He would supply and install them predominantly in the Aboriginal communities in Arnhem Land.

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Craig & Gonda at the Murray river inlet near their rural property – 2011

The day before his return to Darwin, he asked me to marry him – to which I answered YES. I moved up to Darwin five weeks later with my then three and a half year old daughter to be with Craig. After almost four years we moved to Perth (WA) for a few years to follow business opportunities and have spent the last 10 years in Albury (NSW).

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Craig & Brooke (daughter) -2011

Craig was born and bred in Perth (WA) where his family resides and has gone for yearly holidays to see his family since March 2015. This year he was there when his (only) daughter delivered healthy twin girls. To catch up, we regularly FaceTime with his daughter and her husband, the twins, his older grandson (4) and granddaughter (2). He also Skypes with his mother (and does speech practice with her as well), dad & stepmum, sister and brothers on a regular basis.

Craig was very entrepreneurial in his working life. He started his first business, a travel agency, at the age of 18. He then entered the renewable energy industry where he was always at the forefront of new developments.

After moving to Albury, he started the Planet Power renewable energy shop, which he quickly developed into a franchise with 9 shops in Australia’s regional areas. Business didn’t always go to plan, but Craig had the ability to quickly pick himself up and move on towards bigger and better projects.

Prior to his stroke, he had taught himself how to calculate major renewable energy saving solar-wind-water installations for large multinational companies and was very successful at selling these. He was always a salesman at heart and always so motivated and determined to make his working life a success; not just for the economic pay off, or prestige, but for our dream – to help disadvantaged communities in countries like Africa with their water and energy supplies.

In 2011 when we first sent wedding invitations out and the whole event was organised, Craig had a heart attack. Then in 2014 we again planned to wed, but quietly this time around – our world turned upside down.

On 20 January 2014, when he was 53, Craig had a major bleed in the lining of his brain on the right hand side (haemorrhagic stroke). Transported to the Alfred hospital in Melbourne, he was operated on the following day to remove part of his skull to relieve pressure from the blood build up on his brain (surgical decompression). Craig’s skull bone was successfully put back in place (cranioplasty) on 10 February 2014.

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Craig following the removal of the ECMO (after haemorrhagic stroke & major heart attack) – February 2014

The following morning on 11 February 2014 Craig suffered a major heart attack (VF arrest and STEMI). An angiogram with balloon angioplasty came next where they used a small balloon at the end of a catheter to open the narrowed arteries and he was connected to the ECMO (that cleared his blood of carbon dioxide and replenished it with oxygen outside his body to then pump it back in through large tubes inserted in both his groins, because his own heart was too weak and needed to recover) and kidney dialysis machines, amongst a lot of other lifesaving machines. Craig was still critical until 14 February 2014 when they disconnected him from the ECMO in a 6.5 hour operation.

On 11 March 2014 – only 4 weeks later – Craig suffered a massive stroke in the left lobes of his brain. The ischaemic stroke (left parietal-temporal infarct) was due to a dislodged blood clot from his heart. He was then transferred to Caulfield rehabilitation hospital (Melbourne) to start intensive rehabilitation on 28 March, 2014. Another month on, Craig arrived at the Albury rehabilitation hospital (NSW) on 29 April 2014 and was finally allowed home on 14 August 2014.

As a result of the ischaemic stroke Craig was left with serious impairments including right sided weakness (right hemiplegia) and severe expressive speech deficits due to aphasia and dyspraxia, because of the damage caused to the left hand side language centres of his brain.

– Aphasia is a language disorder that affects speaking, writing, reading and understanding the spoken word

– Dyspraxia means that the link from the brain to the mouth muscles is affected. Craig may know exactly what he wants to say, but cannot sequence his mouth muscles to move in the right manner to speak the right word/sentence.

The first 3 months of 2014 were simply put; absolutely horrendous! With my emotions ranging from complete despair, when Craig was on full life support for more than 24 hours following both the haemorrhagic stroke and the major heart attack, to total elation when against expectation he pulled through and recovered remarkably from both these medical emergencies. To then have my world and our life as I knew it, entirely shattered when Craig had the major left sided ischaemic stroke. The first time I saw him after this stroke he could not do or say anything, but wipe my many tears away with his functioning left hand.

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Craig one day after the ischeamic stroke – March 2014

Thankfully 8 months before Craig’s many medical events in 2014 we had moved from our 7 acre property to a smaller house in town. Craig had loved being on the farm though. On weekends he enjoyed using the tractor slashing the paddocks and doing all the other strenuous maintenance jobs that come with a large property. Being in town makes our lives easier and I certainly would not have had the time or the ability to uphold the property on my own.

From the time that Craig went to the Caulfield rehabilitation hospital my life truly became extremely hectic. During that first year I was living from one energy-and-emotion draining day to the next. Not only because I was so focussed on learning everything I could on how to assist Craig to recover as best as he possibly could, but also because my then 16 year old daughter had just started year 12 while going through this dramatic time on her own in Albury. She had the added stress of cooking for herself; looking after the house; caring for our cat and dog and everything else that is involved in running a household. I tried to support and provide for her to the best of my ability from Melbourne with long daily phone calls. Whenever one of Craig’s family members was able to come over on intermittent visits I jumped at the chance to do the almost 700km round trip to Albury and back. Sometimes for one night only.

I did not attend just about every speech, occupational and physio therapy session, but in the beginning Craig needed help with eating, showering, dressing and grooming with which I was involved on a daily basis. With that said, my spirit was often very high, because of the many improvements Craig was making.

The in-house rehabilitation physio therapists got Craig up and walking. At first with the assistance of three people and later down the track with just a walking stick, while wearing a splint on his right lower leg to keep his foot from dropping. The occupational therapists taught Craig how to dress and groom himself to the best of his ability with only using his functioning left arm and hand. The speech pathologists tried very hard for Craig to be able to make sensible sounds and words, and also worked on improving his reading, writing and understanding of the spoken word as well as teaching him to use other strategies (pointing, signals, writing and such) to communicate. Even though, Craig has been unable to speak in normal terms he has been very adept at being able to communicate through body language, pointing and sounds. Prior to his stroke I had always told him he was an open book to me. How invaluable it has been to always have had such a close relationship, so today we can still communicate on a deep level.

On Craig’s return home he continued with weekly speech and occupational therapy at the community rehabilitation. He had Botox injected (August 2015) in his right arm to immobilise the muscles that turned his arm and hand inwards and upwards towards his chest (due to spasticity of the muscles) and to then have the opportunity to strengthen the opposite muscles. We did intense training exercises for about 5 months at home and now Craig can; for instance: use his right arm and hand to mow the lawns and change the catcher by himself, play pool and can often use his right arm in a supporting bilateral role when doing something with his left arm and hand. This greatly improved his independence and importantly his sense of contributing.

Verbal speech did not progress (despite countless attempts) until Craig went for his first holiday to see his family in Perth in March 2015. He was taken to see a speech pathologist and she convinced and motivated him that he could learn to speak again if he spent two to three hours a day rehearsing words and short sentences with me. He came back to Albury and for the first time since his ischaemic stroke he was able to copy me saying whole words. Prior to this, Craig had trouble to control his mouth muscles to copy movements for simple vowels such as the letter E.

Following 3+ months of practicing like this, I developed (with the help of a speech pathologist) a program to sing some of these the sentences together (MIT – Melodic Intonation Therapy) to engage Craig’s right side of the brain were oppose to speaking (left side of the brain) the ability to sing is located. This proved to be more successful. Later on I made a booklet (and a large collage at home) with photos of the mouth movements of letters within the target sentences, in the hope that Craig could instigate the sentences by himself without my help of modelling the movement of the mouth. During that time he slowly learned to say: “Hi, Yes, Come here please and Thank you”. The last time we attended the community rehabilitation (November 2015), following months of daily practice, Craig was able to say: “Hi” to everybody! That was very special.

At the beginning of this year (2016) we started weekly speech sessions at the Speech Clinic at a local university, which offers speech pathology students (under supervision of a very experienced speech pathologist) a chance to interact and assist people with communication issues. This has been very beneficial for Craig. Through various different approaches, and lots of home practice, Craig’s reading, writing and understanding of the spoken word has improved significantly. His speech has progressed that he is now able to say independently: “Good thank you” and “How are you?” when someone asks him “How are you” first. We achieved this by teaching Craig (on advice and with assistance from the Speech Clinic’s speech pathologist and student) to focus on the sound of the starting letter of the first word instead of solely on the placement of his tongue and lips. Craig and I are very excited to find out where further Speech Clinic sessions may take his speech development in the future.

We are also keen to start swimming practice in the warmer months, which on our request was developed by a community physio therapist (unfortunately, at the moment the indoor pool is not suitable for Craig to get in or out off). This will again stimulate his right arm and leg and together with his twice weekly gym sessions it will also benefit his fitness. Craig also really enjoys his twice weekly respite outings to a rural pub (Bethanga, Victoria) to catch up with his mates. They have really taken him in and he is included in all their banter and laughter, which is truly heartwarming.

We are involved in a weekly singing group, the monthly local Stroke Recovery group and the Cuppa & Conversation group, which have been really great to make new friends with people who are in similar circumstances. Especially since so many lifelong friends have gone silent and stayed away. In downtimes, Craig and I love nothing more than to follow the AFL footy on television and on occasion in Melbourne. In summer, he likes watching the cricket on the television outside from our inflatable upright pool.

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Post stroke Craig and Gonda at the MCG watching an AFL game – June 2016

In future, our goal is to recover more function in Craig’s right arm and hand and to develop Craig’s independent speech further. Craig’s dream is to be able to drive a car again and to work in some meaningful capacity. Likewise, I would also like to participate in employment.

Craig is also very interested in being a participant in clinical trials of dental pulp stem cells transplant, bone marrow transplant and/or perispinal etanercept injections. The latter is not available in Australia as yet, but is obtainable in the US and it is my aim to set up fundraising to be able to have this procedure done.

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Craig & Indira (stepdaughter) – October 2016

Thankfully, Craig has still got his positive outlook and his wry sense of humour. Every day we experience – or one of us does something – that has us just about rolling on the floor with laughter. Yes our life now is completely different and rather challenging at times, but following the losses and the feelings of grief we reached acceptance fairly quickly. It is what it is. Hope, but especially our love keeps us going onwards and upwards.

 

By Gonda with the assistance of Craig