It’s 2017 and almost a full year since the last update.Wow – time has flown, and so has Matthew…
I’ll get back to that.
Primarily, 2016 was a year of refinement and surgery. Matthew has continued to make progress with his prosthetics albeit more painstakingly slowly than he would have ever imagined. First, he had cataract surgery on his right eye. The cataract formed as a result of his retina detaching, and that had been caused by his initial infection in 2012. A bonus for having his cataract removed is improved long distance vision, so he has no more need for glasses! After four years, he has finally been given the all clear by his ophthalmologist (a big yay).
Matthew had to return to the USA mid-year for more work on his arms. His prosthetist in Melbourne put together a new elbow/wrist. Matthew took this to Chicago to install the pattern recognition software (see COAPT Engineering) and connect to a new set of sensors/cuff on his arm. It didn’t quite go to plan – Matthew is the only patient they have had (and only one of two in the world that we know of) that has both osseointegration in the arms and targeted muscle renovation. This means that the muscles in his arm are quite active as the bone is carrying the arm’s weight. This creates a lot of background EMG signals that the pattern recognition software has to deal with. This meant that they had to trial an initial electrode placement and then totally redesign the cuff (which holds the electrodes).
After redesigning the cuff and fixing some wiring issues, the hardware was as good as it was going to get so Matthew then had to learn to drive the arms. He was able to get reasonable control but there was quite a bit of unreliability due to the weak signals in his newly innovated muscles. After quite a bit of troubleshooting – a trip to ultrasound scanning and then the surgeon – the recommendation was to remove some more soft tissue overlying the muscles so that the sensors could pick up the EMG signals in his muscles more easily. The amazing team and facility in Chicago made the trip worthwhile – great thanks to Kristi Turner, Laura Miller, Dr Todd Kuiken and the entire team at the Rehabilitation Institute of Chicago.
Following his return from Chicago, Matthew travelled to Melbourne to discuss the issues and get some more scans with the OPRA team which resulted in the planning of two more surgeries. The first surgery in August was to investigate pain associated with the implant in his right leg and to undertake revision surgery (nip and tuck of excess tissue) on the leg. The investigation of his right leg revealed issues with the abutment (the bolt that screws into the implant that is inside the bone). This had created some metal burrs on the inside of the implant in the titanium. The second surgery a few weeks later was another nip and tuck, and involved removal of the soft tissue on his arms. This meant Matthew was unable to wear arms or legs for some time, and there was a lot of quiet time for a few months.
After finally healing from the surgeries it was time to try the new arms again, but this time there were gremlins in the electronics. Matthew is still waiting for a solution, so while he waits, his trusty locking elbow set are working well.
It took Matthew and the family a while to readjust as he had hoped the trip to Chicago was the end of the current phase of medical/prosthetic changes. He was looking forward to moving on with some new opportunities, but as much of the year was spent in recovery/adjustment mode, he focused on 2017 being the ‘move forward’ year.
Never one to sit and do nothing, Matthew completed his company director’s course and was appointed to the board of Hear and Say, a not-for-profit organisation that’s close to his heart. Matthew will have to have a cochlear implant in his left ear in the near future as he has lost significant hearing as a result of the disease/antibiotics and there is a chance he will lose all of his hearing. While he can hear, he will have an implant to ensure he retains some sense of hearing if he does in fact go completely deaf. He had planned to have the surgery last year, but delayed that due to the other issues with his arms and legs.
He progressed with an order for a car for him to drive. It has arrived in Melbourne and is currently being modified (Capital Special Vehicles). He also placed an order for an off-road recumbent mountain bike that can be fully electrically powered (see Outrider USA). Matthew’s ability to explore these options for independence are only possible through the support provided by donations to the Renovating Matthew Foundation, so his and our gratitude remains profound.
Some other great stuff also happened. Matthew got out and about conducting talks, and worked actively as an ambassador for the Queensland-based antimicrobial drug resistance group Community for Open Anti-microbial Drug Discovery. He also had the opportunity to do work with Origin Energy earlier in the year, and dipped his toe (ha ha ha) into the life of a lecturer by giving a lecture to budding engineers at the University of Queensland.
On the family side, Diane surprised Matthew with an indoor skydiving session for his birthday (see above photo). He says it was terrifying but extremely liberating for the short time he was in the air. The support he had from the staff at iFly Gold Coast was amazing, and all the boys also had a turn.
Later in the year, Matthew and the family attempted their first ever ‘road trip’ from Brisbane to Canberra. Extensive planning went in to identifying wheelchair friendly accommodation along the road, and Diane was directed by five passenger drivers and map-readers along the road. Highlights of the trip included a visit to Parliament House, and a spin on a zipline, where Matthew’s arms provide a unique method of balance.
The trip also included a visit to Taronga Western Plains Zoo, where Matthew was able to feed-kiss a giraffe…
The end of the year came with a ‘super-high’. Having been rejected as too high need for an assistance dog, the children had been promised a family puppy when ‘things settled down’. Christmas 2016 was that point. A stealth operation coordinated between Matthew, Diane and our sister Rachel resulted in the arrival of Teddy, a cavoodle puppy, on Christmas eve. To say that the kids were excited is beyond an understatement. He is the source of much love and enjoyment (as well as work in puppy training) for everyone. He spends very little time on the ground.
What were his main lessons from 2016?
That too many scans make you radioactive when you’re trying to get into the USA through an x-ray machine.
That progress is slow, and patience remains a virtue.
That there is still so much we don’t know about sepsis and the way the body works.
But mostly, that making the most of what you’ve got keeps the glass half full when there’s barely a drop left on a bad day.
Until next time!
Thanks for the update Kate. Matt and his family remain an inspiration to the rest of us. I wish you all, but especially Matthew, all the best for 2017. Kindest regards Wendy Mathieson
Hi Wendy. Thanks for the kind words. With Matthew, you always know it will be a great year, even if it’s not. All the best, Kate :).
Wow Kate, an amazing update!! What a busy year! Loved all the details…when you take the emotion out and just look at all the medicine and science behind it, it’s quite incredible and fascinating isn’t it. But of course, Matthew is your beloved brother, so the emotion must always be there. So wonderful to be in and have such a supportive family unit ❤️ Hope your own kids and husband are also well and that you yourself have a happy and fulfilling 2017! And hopefully we can also catch up!! Xx Ulrike
Sent from my iPad
Hi Rikky – yes, it is incredible. Thanks for the kind words, and yes, let’s catch up! Kate XOXO
What a great update, keep up the hard work and while it probably seems like an impossible journey, just look back to see how far you have come. All the best for 2017 to you and your family.
Thanks Ben. I’m slow, but get there in the end :). We’ll try to post a bit more regularly this year – especially when he gets the bike and car. Watch out Brisbane, no? Have a great year! Kind regards, Kate.
I continue to be inspired by Mathew’s progress, and wish him continued success with the Elecgtrical/mechnaical processors.
Hi Peter, thanks for thinking of Matthew. He’s looking for ideas for the electrical issues so if you have any, stay in touch! Kind regards, Kate.
Thank you for the update Kate. What an amazing journey you are all on. I hope 2017 will be a good year for you all. xx
Hi Heather! Thanks for the kind words, and happy travels. Good luck for the year, and we’ll look forward to catching up at some point. XOX Kate.
Excellent update on your busy year! Lets hope 2017 is indeed full of progress. We have a schnoodle named Teddy! She is an absolute delight to the family, I am sure your Teddy will bring so much love and happiness to yours. Dogs really are wonderful companions no matter what else is going on in your life. x
Hi Zoe, thanks for taking the time to send us a message. Yes, we’re a dog family now. Rachel has Bear, Matthew has Teddy, and we have greyhounds Hamish, Valentino, and Homer. They are a huge comfort and in this case, extra special. All the best, Kate.
Hi Everyone, Thank you for a very comprehensive update on Matthew’s progress & some setbacks. I have been wondering how things were going as I haven’t been able to catch up with Chris all year, time & distance seem to be against us, with any luck & that changes this year. 2016 was a huge year for you all, especially Matthew, you are a champion, I loved the photo of you flying. What a cutie Teddy is, I wanted to reach in & give him a snuggle, can’t imagine why he hasn’t had his feet on the ground very often!! such a lovely family photo as well. Hope 2017 brings more highs than lows for Matthew & lots of enjoyment for the family. Love & best wishes to you all, Merle
Lovely to hear from you Merle, and thanks for taking the time to make contact. 2017 will be awesome – hope it is for you as well. Lots of love, Kate. XO
I met Matthew during his time in Melbourne over August and September, it was then that he told me of this blog. I’m glad to hear that Matthew is doing well and has had some well deserved holiday time and that there is a beautiful addition to his charming family.
Meeting Matthew and Dianne was one of the most incredible moments in my life so far. To meet people who have been through so much and have maintained such positivity in the face of their challenges says so much about not only their individual character, but also that of those around them.
My life has been forever changed through meeting such astounding people and I wish Matthew and everyone all the best for the future.
Thank you for the lovely comment and for making contact Megan. 🙂 Kate.
I’ve just now finished the book, “Will to Live,” and I was so pleased to find your updated blog with further information about the remarkable Matthew and his equally remarkable family.
Your book was amazing and absolutely enchanting and I fell in love with each and every one of you, including your wonderful friends. I sincerely hope this finds you all doing well.
Thank you so much for sharing your story! You are a beautiful family and I wish you all the best for 2018 and beyond!
Hi Dot, thank you so much for your lovely comment. Best wishes also, and keep in touch. Kind regards, Kate.
Just read your progress update, great to see the progress you are making and to see the family are all growing up. Great hard work mate, hang in there, always thinking of you Mathew the family and your progress.
Hi Kate, Matthew, Diane, Rachel and all the Ames kids and Matthews parents!
I’m just sitting in Brunswick Heads library with tears in my eyes reading the final pages of your book “A Will to Live”. I found it in a library of a family retreat centre in the border ranges 2 years ago & was riveted on every page, but couldn’t finish it in the few days we were there. I finally got around to ordering it into my local library and am now at the end & am so curious and interested to know how Matthew is doing that I looked up your blog on my phone immediately. I’m delighted to hear he now has groovy prosthetics but sorry to hear about the glitches! Stoked he’s joined foundations and had a shot at lecturing & delighted about the cute puppy!
I just want to say that I’ve found YOU ALL to be an incredible group of individuals with the exact personalities we need more of on this planet!! People that nurture life, honour love, connection to community, have an attitude of gratitude and the glass is half full positive perspective on life!
I’ve found reading about Matthews journey heart-wrenching and lesson enforcing! The positivity of Matthew, Diane & their kids is incredible and inspiring!
Im recommending it to anyone who is struggling with health and will benefit from learning how to think more positively and live with more love each day, because Matthew’s story is testament to the fact that both LOVE, FAITH IN OTHERS & ONESELF & a POSITIVE ATTITUDE can make all the difference!
Thanks for being amazing people and sharing his story!!
Love a reader from Byron Shire
Just had to send this note to say how excited and proud I was to see matt in the commonwealth games relay!!! Say hello to mum And dad d hope they are well. Wonderful to hear how well matt I’s doing and the work he does. Cheers Carol waters. Ex Fiji. Bernie is my partner?