Borders Blog (March 30, 2017) THE E'tape Caledonia is now less than three months away and training is coming along well. I know 81 miles is going to be challenging, but it'll be well worth the hard work. Here's a link to their website if you're after some more info - www.etapecaledonia.co.uk The money raised is going to a good cause, Marie Curie, and I'd very much appreciate any donations so the target of £350 is achieved or even surpassed. Here's the link to my JustGiving page - www.justgiving.com/fundraising/ConnorHughes4EtapeCaledonia Things here at home are progressing well. I'm continuing my rehab with daily strength and conditioning, along with leg extension and flexion exercises at night. I have three programs on my stimulator: one for each leg, and one for my torso and lower body together. Twice a week I'm using the stimulator to work on my standing. My legs are getting stronger with better muscle activation. Ideally I should be standing daily, but it puts a lot of stress on my body and, along with everything else I'm doing, it takes it out of me. After E'tape is done and I've finished my exams, I'll definitely be upping it, working to be standing daily. In other news my car has finally arrived and adaptions are under way. It has been a long time coming, but hopefully I'll be driving in no time. Harrisons of Peebles have been an absolute pleasure to deal with. They've kept me informed of everything as it happens, and went all-out to get the most suitable car available to me. I'm very grateful for all their help. On a final note, I'm trying to get a wheelchair rugby club set up here in the Borders. It's something I've wanted to play since day one really, but there is just nothing available within a reasonable distance. Right now I'm looking into grants that could be available to access, as well as sponsors and potential umbrella organisations. One big thing I'm trying to gauge is if we'd have suitable numbers of people interested in taking part - players, committee members, coaching assistance or anyone interested in getting involved and wants to help out. If this is you, or you know someone who might be interested, then please get in touch either through the website or direct to me at connorsjourney@outlook.com A little preview of wheelchair rugby, aka 'Murderball'! - www.youtube.com/watch?v=_kaT5dDiISw The new car, supplied by Harrisons of Peebles, who have been incredibly kind and supportive. I'm able to keep up my training programme thanks to the handcycle indoor roller. Borders Blog (December 13, 2016) HI again! Just an idea of a few things I've been up to recently and the things to come! Attended my annual consult with my doctor from the Southern General. Good news all round really. In the accident I dislocated my 5th & 6th vertebrae. However my initial diagnosis was worse. When I left the hospital my level of function was sitting at C4. Now my sitting at the functionality of a C7 with weak signs of C8. Very promising stuff, as this shows neural re-growth/re-routing. Was a good boost to confidence as it proved everything I've been doing is working! Recently I've been looking into SCENAR therapy. This is very similar to functional electrical stimulation, but at the same time as working the stimulated muscles it promotes self-healing. Here's a link to explain it all slightly better! http://www.amplifiedagility.com/scenar-stimulate-self-recovery/ Early stages of looking into it just now but there seems to be some success with it around the world, and if I can get my hands on a SCENAR machine it would be an easy addition to my routine. Putting a big effort recently into using the stimulator to stand! Here is where I put the stimulator to real use! Feet & knees are braced to help with stabilisation and with the stim on, and a little help, I can get from a sitting to stand position. Once up, all the muscles are activated and I can independently hold this position. Biggest problem I seem to face with this is blood pressure. After a few sit-to-stand progressions, pressure drops quickly. At this stage all I can do is persevere, and get my body back to being used to being fully upright. Over time I'll nail it! This bit of kit was purchased by the Murrayfield Injured Players Foundation. This charity, as well as Hearts & Balls, have been incredible to me - helping whenever and with whatever they can. They both are owed a massive thank-you for everything they have done for me. It is these two charities, along with Stuart Hastings (see 'BLOG EXTRA' below), to whom I must give a huge thanks to for enabling me to get a hold of my hand-bike. As you may know, I'll be taking part in the Caledonia Etape come May - an 81-mile ride in aid of Marie Curie. I've experienced first-hand how important fund-raising is! It's thanks to people's generosity that I'm where I am today. This is my chance to give a little something back, and it's thanks to these guys that I have this chance. The hand-bike arrived last week after a few hiccups with shipping, but it's here, and built up ready to go! Need to crack on with training now. Building process! David giving the bike its first test ride late at night. Hence the head torch... New car should also be here early December. Once it's here it'll get sent off for some adaptions. Pictures to follow! And on a final note, I received an anonymous donation through the post just last week... and also last year around the same time. No name on the envelope, but you know who you are, and I'd like to extend my gratitude! Many thanks indeed!! It's getting near to Christmas time folks, so I hope everyone is getting organised for the mayhem to follow! Merry Christmas everyone! BLOG EXTRA! Plexus CIM/CAM technician STUART HASTINGS explains how an in-house project from Kelso helped give a massive boost to Connor's Journey. AT Plexus we are continually looking at ways to improve efficiency, saving time, money and effort through our processes. This strengthens our position in the global market and maintains customer satisfaction. The best of these projects are entered into the annual Plexus 'BEST' Awards. Each of the project teams then have to present their project to the site management team, which is not so scary… Two teams from Kelso were then put through to the regional finals to take on competition from Livingston, Romania and Germany… a bit more scary now! My team and presentation were lucky enough to then win and qualify for the global finals over in Chicago, where we would take on the rest of the global sites - exciting, but extremely nerve-racking at the same time! We were flown over, all expenses paid, to present our project to the upper echelons of Plexus management and to the rest of the teams from around the world. Quite an ordeal, as we had to sit through all the other presentations on day one, as we were not presenting until the following morning. Day two came around way too quickly for my liking! Unaccustomed as I was to presenting, here I found myself in front of a room of around 60 people and up against some really worthy competitors ('bricking it' comes to mind!). Somehow we managed to get through all 52 slides in our allotted time slot, with not too many stumbles or awkward questions. As part of their reward for getting to the finals, each team was able to nominate a charity of their choice. I couldn't think of a more worthy choice than Connor's Journey, for all the finalists would receive a cheque, of varying amounts, depending on where you were placed in the finals. It was a nervous wait as the judges went through the different categories, calling up the teams in ascending order. We watched one team after another going up to receive their trophies and cheques for their chosen charities… anticipation was high to say the least! Then it came down to the last two places in our category - ourselves or team USA. Alas it was not to be, as the well-polished and deserving American team were proclaimed winners. However, second place was still an amazing achievement against such strong competition. This also came with the added bonus of a $1500 cheque… Ah, but the story doesn't quite end there. Since this was the final year of Plexus C.E.O Dean Foates (and whether it was this fact or perhaps a few too many cocktails from the free bar), when Todd Kelsey was concluding the ceremony Dean piped up from the crowd and suggested that we should maybe double the donations to the charity. Todd nervously looked at the Plexus Finance Director, then back to Dean, and said: 'OK, I guess?!' Just then Dean spoke up again and told the gathering: 'Hell, no. Why don't we quadruple it!' The upshot was that we started with a cheque for $1500, and 10 minutes later it had been transformed into an amazing $6000! We have been following and supporting 'Connors Journey' over the last couple of years, as we can all find inspiration from such a strong and focused individual as Connor. Borders Blog (September 23, 2016) HELLO everyone! I can only apologise for the recent absence from my blog. I'll be making a far better effort to keep everyone updated more often, aiming for at least one blog post a month, big or small! There's certainly been a lot going on here recently, so here we go... Firstly I'll finally be returning to full-time study come October. I've put a lot of thought into this over the past few months, and as much as I would love to be able to return to Stirling, living away from home isn't an option for me just now. My first year at Stirling Uni was incredible, one of the best of my life. However, I've just enrolled with the Open University to study Planetary Science and Astronomy - a big change from accounts and maths, but I've always enjoyed physics so I'm looking forward to seeing how it goes! After my several driving assessments, I've been deemed safe to drive. I've just received my new provisional licence, and from this point the process is the same as it would be for any other learner driver, albeit with a suitably adapted car. Speaking of which, my thanks go to Harrisons Ford of Peebles, from whom I've been able to get a one-off vehicle. They went above and beyond to help choose the perfect option, and the service they provided was outstanding. My car should be arriving some time in October, and from there it should take roughly a month to get it adapted. I'll be sure to do a grand unveiling once everything is complete! Meanwhile recent assessments at the Southern General have concluded that I'm 100 per cent eligible for hand surgery, hopefully allowing for a stronger, more functional grip. The lack of hand function has long been one of the most frustrating obstacles in my daily life, so this will be a big step in the right direction. I am definitely going ahead with the surgery, but have chosen to put it on hold for the time being. The procedure involves a long recovery period - two to three months of absolutely no use of the arm. This would impede on training for my next big challenge - the Caledonia Etape Challenge, an 81-mile bike ride in aid of Marie Curie. The ride takes place next May, and a few of my friends have signed up alongside me. Check out their web site - http://www.etapecaledonia.co.uk I'll keep everyone updated as we get closer to the date. On another note, at this point in the year - coming up to the two-year anniversary since my accident - it is a time of reflection. It's been a long journey, with some serious lows but also some brilliant highs. This time last year I was in Thailand, which in itself was a crazy trip. However, it proved highly beneficial and I'm one of the lucky few who has had that chance. Looking back I've come a long way since then, and I couldn't be more grateful to all those who have helped me along the way. It's been one hell of a journey, so thank you again to everyone who has been riding it with me! Making use of the Batec - still one of my favourite bits of kit. Brilliant idea! My work station and books for the new Open University course. Borders Blog (June 22, 2016) Hello again! I thought people might like to see some photos of my new Batec handbike, which is proving to be invaluable. The handbike delivers a really good work-out for the upper body, and I have already noticed a difference in my shoulder mobility! I cannot thank local company Plexus enough for all the fantastic fund-raising they and their employees have been carrying out in recent months. It's only thanks to their hard work and commitment that the new Batec handbike has been purchased, and I remain truly grateful for everything the Plexus workforce has achieved. Over the past few weeks it's been relatively quiet here to be honest, with me working hard on the same things to boost my independence. I had my driving assessment a couple weeks back, which I'm pleased to say went well, and it felt great to get back behind the wheel! I'm now waiting to receive the assessor's report so that things can then move on from there. Hopefully it won't be too long until I can legally drive! Meanwhile I've been invited up to Aberdeen University to see at first hand some of the spinal injury research they're currently working on up there. I'm very much looking forward to this, and all that needs to be sorted out is a suitable date. Finally, the other day I had a photo taken of me and my dog Crunchie (see bottom picture), and this got me searching through some old pictures. I found one which had been taken exactly a year ago, and thought it would be a good idea to put it up on the Connor's Journey website. Crunchie is a Rottweiler and turned one in May. Way back when I was in hospital there was a beautiful therapy dog called Jasper that came around the ward every Tuesday, and he always made my day. From then on I had my mind set on getting myself a therapy dog for my return home! Then there was Crunchie... more of a constant companion than a therapy dog, she's always by my side and honestly she's my saviour, especially during my first wee while at home, which was really tough. They say a dog is man's best friend - and I couldn't agree more! Connor is finding the Batec handbike a huge benefit, and is indebted to all the fund-raisers whose efforts made its purchase possible. Connor's dog Crunchie as she is today (main picture), and as a puppy exactly one year ago (inset). Borders Blog (May 9, 2016) THERE'S been plenty going on lately, so thought I'd post an update on the web site along with some photos. Here goes! 1. Re-programming my FES (Function Electrical Stimulation) bike. This is a fantastic piece of kit used to help slowing down muscle atrophy in the legs. The picture shows me chatting to Stuart, from the company that manufactures the bike. 2. I've been working a lot recently on nailing fully independent transfers! I'm getting there, but still some way to go. Hoping to be rid of the transfer board soon… so just pop and go! 3. My new rigid back-rest provides far better support than the standard sling back-rest. The stability I've gained using this has been fantastic! Not only does it give me more confidence sitting, it also helps promote proper spinal alignment. Only wish I had fitted it sooner! 4. For any level of spinal injury, standing is of the utmost importance. That's why I've been putting in the hours on my tilt table, which helps stabilise blood pressure, promotes better digestion and, most importantly, gets some weight going through my bones. This helps bone density loss as well as muscle atrophy. 5. & 6. Testing the Boma 7 out with a trip to this secret waterfall close to our house. Boma was managing no bother until . . . it got wedged in a swampy bog and needed the help of two people to free it. The front axle somehow managed to get twisted in the process, so the ride home was considerably slower. It's now in the process of being fixed! 7. & 8. In recent weeks I've hit a few other speed bumps along the way, such as two dislocated fingers, shredded fingers that required stitching, plus the entire gym being flooded after the recent stormy weather. Thankfully all is well now! Finally, on a more serious note, there has been a lot of fund-raising and donations coming in to Connor's Journey. I really appreciate all this support, which enables me to do all of these things and more! ADVANCES IN TENDON TRANSFER RECENTLY I've been studying the subject of tendon transfers in quadriplegic patients. Here is the link to a web site that has a brief overview of this topic - http://www.sci-illinois.org/surgery_hand_function There are a vast number of options and outcomes regarding these operations - from an active thumb-pinch, which is the most basic procedure, to a single-stage operation aiming to reconstruct the entire hand. This is called the alphabet procedure. The following link will take you to the web site of the National Center for Biotechnology Information in America, where you can find a quick overview of the alphabet procedure in a paper posted by Sweden's National Centre of Reconstructive Hand Surgery in Tetraplegia - http://www.ncbi.nlm.nih.gov/pubmed/22105635 In an ideal world I would love the alphabet procedure, as it holds the most promise for functional improvement. However, it all depends on the current functional muscles in the arm, so I'm currently waiting to book in a second appointment for further assessment up in Glasgow. The NHS can be frustratingly slow at times though... Birthday Blog (February 5, 2016) I had a lovely day yesterday on my birthday, spending it with the family. I even had a surprise wake-up call from the youngest of my two nieces, Inola! I'd like to thank everyone for all the kind messages, and it's been good to catch up with a lot of my friends from school. Meanwhile things are going steady here! I'm currently working on two things - looking into a tendon transfer to try and restore some hand function (which would be unbelievably useful and make a real difference in day-to-day life!); and I'm also in the early stages of consulting with a local chiropractor to ensure the alignment of the spinal column is correct and to try and promote overall wellbeing. As I said, it's in the early stages, but I'm really excited to start as he has a real understanding of the problems that come with an injury like mine, and believes we can make small but crucial changes to help! Needless to say I'll keep everyone informed on how these two plans unfold as they progress! Connor gives a cuddle to Inola, the youngest of his two nieces. Borders Blog (October 20, 2015) Well, we made it back home safely from Thailand, after a marathon trip. There were a few hiccups, such as the lift being broken on the aeroplane, requiring us to navigate a full flight of stairs. . . Still, it never seems as bad when it's on the return journey! It has been a big relief to be home again with all my family, and of course my Rottweiler, 'Crunchie'. The jetlag has finally settled down and I have been enjoying the use of my new off-road wheelchair, the Boma! It's absolutely great as I can go anywhere in it, so we have been out in the fresh air as much as possible tiring out the dogs. We also have our new baby niece Inola Blu to keep us busy! Christmas is going to be a lot of fun this year with a Rottweiler puppy and two nieces now! On a serious note, the hard work really starts here. There is no framework of clinicians and therapists outside my room now, so I have to sort out my own timetable of exercise and stick to it, in order to get the most out of the stimulator and stem cells. In a way, I prefer it like this. I have always liked sorting my own time out and planning my own exercise regime. I'm still waiting for my new weight-sparing sling and a few other bits of equipment for supporting 'sit-to-stand' movements. As a result since arriving back home there has not been much standing up yet. Instead we have been concentrating on a lot of stretching and upper body work and sitting balance. We have been using the stimulator to exercise my lower leg muscles for now. Thank you all again for supporting my trip, and I hope to keep you updated with progress at home in future blog posts. Connor pictured taking a spin in 'the Boma' near his Kelso home, watched by his sister Sarah's partner David, who is a general all-round handyman keen to help Connor construct all kinds of helpful equipment! Thailand Blog (September 27, 2015) I have made it to the final week! The two lumbar punctures were fine, long days, as I need to fast before them and lie completely flat afterwards for four hours, but that is finished for now. My last instalment of stem cells will be administered intravenously on Friday, giving me a total of 400 million in my body! Hopefully they will help restore some temperature control and help reduce my nerve pain, which is one of the most difficult things to deal with on a day-to-day basis. I have spent a lot of time in the hoist this week, focusing on strengthening my standing position and making sure the programming is optimal. Ideally you don't want the muscles totally locked, you want the spinal cord reflex circuitry activated so that if I lean forward, back or sideways, the appropriate muscles react in order to correct my position. It's tricky to manage, as the hoist here isn't a weight-sparing one (it just gets you up and down), but we are coping for now. This coming week we will be focusing on programming for a stronger sitting position, for 'sit to stand' movements, and for stepping. It will be a big push to get it completed - I just need the programming right and then I can practise and strengthen at home. I also have my final transcranial-magnetic stimulation therapy, hyperbaric sessions and acupuncture this week, including an acugraph to measure if all this acupuncture has sorted out my imbalanced "chi"! I'm hoping so, it's all part of the push to get these stem cells working! This time next week we will be on our way back up to Scotland from Heathrow. I will let you know how the final week goes, and how it feels to be home finally! This photo shows Connor with 'Bee' (the head physio) and 'Woody' (one of the assistants), both of whom are helping to optimise Connor's posture while he concentrates on standing. This photo shows just how far Connor has come in a few weeks - his lower limbs are stable enough for him to balance without leaning on his arms at all! Thailand Blog (September 20, 2015) We are gearing up for the last two weeks here in Thailand! The schedule is mainly focussing on fine-tuning the final programming of the epidural stimulator, especially in the standing and sitting positions. We have finally persuaded the physiotherapists here about the importance of programming whilst in these positions so that the spinal cord is receiving sensory input at the same time. Unfortunately this means a lot of time spent in a very uncomfortable hoist machine! It is hard to breathe when I'm strapped in, as it constricts my abdomen and doesn't encourage the best posture as the straps pull my torso in the wrong direction. However, it is all they have here so I have to make the best of it. I have started looking into hoists to use at home that support you a bit better. One of the trickiest things to deal with when sitting and standing is hypotension - a drop in blood pressure. Normally in a standing person the muscles contracting in your lower limbs pump the blood back up to your heart and head, but in a paralysed person the blood pools in the lower extremities, and so you can get extremely light-headed and dizzy. I have two lumbar punctures scheduled for this week to insert my stem cells. These are always tricky days, as I have to fast from midday and lie completely flat for four hours afterwards. However, after that I only have one more intravenous dose to receive before travelling home. A hoist machine supports Connor during sitting and standing exercises, watched by sister Sarah and the physiotherapists. Thailand Blog (September 13, 2015) Another week down, only three weeks left to go! We are definitely pining for our own cooking and the company of a certain Rottweiler puppy, but we have been kept busy with the same sort of activities as last week: programming of the stimulator, upper body exercises, acupuncture, hyperbaric and transcranial magnetic therapy. I have had my second lumbar puncture for stem cells and I am due for another on Tuesday. Thankfully this time round I avoided the post-op headache by having an extra bag of IV fluids, so hopefully I can continue that pattern. The stem cells are not likely to even start taking effect for another 3-6 months, so just now it's all about looking after them and giving them the best start in life. Programming of the stimulator has concentrated on strengthening the control and magnitude of certain movements, in particular lifting my leg up in the air. However, my sister and I have been discussing the methods in detail with the therapists here... the approach here seems to focus on eliciting voluntary control of muscles, but actually the initial studies in America focussed on function more than voluntary control. It might sound bizarre to hear that I don't want to focus on voluntary control, but I want to make the most of the stimulator and it has the potential to allow me to sit and stand myself by activating a certain programme - that would have a much bigger impact on my life day-to-day than being able to move my foot on command whilst lying in bed. The technique basically involves combining the stimulator with sensory input in order to achieve a function rather than just programming the muscles. So to achieve the most effective programming, they need to try doing it while I am sitting and standing (with support and hoists etc.) and try and activate intrinsic reflexes within the spinal cord. You don't think about how to stand up do you? Your spinal cord is programmed to tell your muscles what to do as soon as your feet hit the floor. So hopefully next week I can send some videos of me up and about a bit more. It might sound odd to be challenging the technique a bit, but I am one of the first in the world to get it so it's as experimental for the therapists as it is for me!! Not seen much of Bangkok yet, as not much free time. However, I have been out for dinner and ended up wheeling along the road rather than trying to navigate the very bumpy pavements! On a more reflective note, some of you may realise that it is a year today since my accident on the 13th September, 2014. I am in a more fortunate place a year on than many spinal cord-injured people, but I can't deny it has been a tough, sad and draining year, and I am still coming to terms with what happened and how it has changed my life. I can only thank everyone who has helped me, and please understand it all makes a difference. Connor shows the scars from the surgical procedures he has undergone at Bangkok's Better Being Hospital. Thailand Blog (September 6, 2015) This week has been very busy. I started my stem cell injections, and they have been trying to make sure the stem cells get the best possible start in my body. I have been having my nutrition analysed in minute detail, daily acupuncture, Trans-Magnetic Stimulation through my head, plus sessions in the Hyperbaric Oxygen Chamber. This is a tiny chamber that you sit in for an hour, and they slowly increase the air pressure inside in order to flood your system with oxygen and encourage the stem cells to bed down and hopefully differentiate into nerve and supporting cells. The Trans-Magnetic Stimulation involves having a Hoover-type machine attached to my head to transmit magnetic signals into my nervous system, again trying to stimulate the stem cells pathway. Physiotherapy has concentrated on programming my epidural stimulator. They managed to match up signals between the stimulator and my ankle flexors and quadriceps muscles, now the task is to practise and practise with the stimulator on and try to control these muscles. It's hard work, but progress is being made - when the stimulator is on my ankles are able to move! The therapists will continue this work over the next few weeks to match up each muscle with a signal of appropriate strength. We still have four weeks here, but even so it will be a push to get it all done! I also got my own remote control for the stimulator, so I can start to use it in my own time. This week has also given me a chance to speak to the other patients here. There are two other people who also have the stimulator and who are at different stages of programming, so it is useful to see how they're progressing. They are also so many other patients here with debilitating diseases, who are hoping stem cells can help them. Although my life has been irrevocably altered, at least I am not getting worse, I have hope, some people can only hope to delay the effects of their conditions. On that note I am off to eat a perfectly balanced healthy meal! Hope everyone is well at home and enjoying the fresh air, let's just say it is a bit muggy here! Connor inside the Hyperbaric Oxygen Chamber. Thailand Blog (August 30, 2015) Well, I survived the surgery! I have two large wounds, one over my spine and one over my right side, one each for the placement of the stimulator and for the battery. I have been on bed rest to allow the wounds to heal, but I have still been able to do physiotherapy and occupational therapy from my room. The good news is that the stimulator has been placed correctly, and when it is switched on the electrical signals are reaching all the right muscles. The next few weeks will now be spent "programming" the stimulator (i.e. matching up what electrodes need to be stimulated in what order to achieve a certain movement). I have also been getting very used to daily acupuncture - needles everywhere! The acupuncturist here is very experienced and is even helping me sleep by placing needles in certain places. Stem cell injections begin tomorrow, hoping I don't have too much of a headache afterwards... This X-Ray shows the position of the stimulator on my spinal cord, you can make out the 16 electrodes and their leads, leading to the battery, which will last for the next nine years, at which point it will need replaced. Thailand Blog (August 24, 2015) We made it to Bangkok safely, arriving on Wednesday 19th. I have spent the rest of the week having blood tests, X-rays, an electromyography (to measure signal activity in my muscles), nutritional analysis, acupuncture and meeting my physical therapists. I have also had Occupational Therapy, which gave my arms and shoulders a good workout. Right now I am waiting in the Sukhumvit Hospital for my surgery later this afternoon, to place the epidural stimulator on my spinal cord. Very exciting, scary stuff! Stem cell injections will begin next week, and hopefully I will begin to see some effects before my trip is out. The staff are all very friendly and helpful although we have had some "lost in translation" moments! Bangkok is a busy crazy place but we are surviving the traffic, and the locals are all friendly. I will let you know how the surgery goes. Thank you for the continued support everyone. Connor receiving an electromyograph, which measures the signal in his muscles. This will be repeated after all the treatment and the results will then be compared. Acupuncture! These needles were all over his body. Connor will get Acupuncture at least three times a week while here in Bangkok. The view from our room in Sukhumvit Hospital.