Friday, 1 June 2012

Now are you sitting comforably ? Once upon a Time....

I'm a right above knee amputee (RAK) as of September 11th 2007. 

Here's a little bit of a story and hopefully some info you might like to read about.

One of the most important parts of a prosthetic limb is the socket (that's the bit that your stump or residual limb if you want to be more technical sits in) If the socket doesn't fit or is uncomfortable you could have a £50,000  knee,or other component for say an upper amputee and at the end of the day it would be useless as you couldn't wear or use the limb for very long. Imagine wearing a pair of really uncomfortable shoes for hours on end, ones that make your feet sore and get blisters. You can't wait to take them off and relax yeah!!!?, then imagine having to go through it all the next day and so on and so on and that will give you a small idea of what it's like to have to wear a prosthetic socket that is painful and uncomfortable.

So anyhoo like I say in 2007 I had my leg off. I went for the usual rehabilitation at my local hospital and within about 6 to 8 weeks of my amputation I was walking on my new NHS supplied prosthetic limb. I had already decided I was going to get back into cycling (always had a bike as a kid, the usual Raleigh Grifter and a Bmx in the early 80's) Before I took ill I used to do the odd spot of mountain biking.

So I sold my beloved MINI Cooper S and put the money towards my Ibis Mojo SL. The bike arrived a good few weeks before I had my amputation and sat in my dining room. I got it early as I knew it would give me motivation to re-learn to ride.

Re-learning to ride after not being on a bike for well over 12 years was tough, not just the physical side, no it was mentally tough. You see your brain keeps telling you you have two legs. I know it sounds weird it's obvious you can look down and see one is not there, but your brain forgets. It took me quite a while to learn how exactly to mount a bike and then I was sort of confused on just how to start. I mean which foot did I put on the pedal first? How did I push off? How the hell do I keep my foot on the pedal?, it keeps falling off  and a whole range of other stuff that I had to figure out. At this time I was using my NHS supplied limb and the socket was real uncomfortable, it was high on my inner thigh and it would catch the nose of my saddle as I rode from time to time. You could tell when it caught as it wasn't just the socket and saddle getting nipped, it was also bits of my skin on my inner thigh and I would shout out in pain and frustration, also with a few choice words. I think I went through around 4 or 5 saddles as they kept getting ripped right on the nose, because of this socket. You see it just wasn't really designed for riding bikes. That's the thing you quite a few people don't realise you have to have different prosthetic limbs to do different activities, for example you need a different limb to shower in, a different limb to run in, a different limb to walk in and so on you get the picture.

Eventually I had the knack of riding, it wasn't pretty but hey I was able to get out and about, which for me was amazing after spending over 12 years of mainly being cooped up in the house. It was about this time I had started a Facebook group named Facebook Amputees. A very nice guy named Johan contacted me through Facebook after seeing I had learnt to ride my bike. Johan is a prosthetist over in South Africa and he asked if I wouldn't mind passing on some riding tips to a patient of his who was about to undergo an amputation. As I was chatting to Johan he asked about my cycling and how it was going I explained, yeah it was going well, it was just I was having all this bother with my socket nipping and being uncomfortable. Johan mentioned he had a friend here in the UK named Jamie Gillespie and went on to explain Jamie worked for a private clinic named Pace Rehabilitation, he suggested  I contact Jamie and he would do like wise to give Jamie a bit of info on what I was doing.

While all this was going on I had seen a guy on Youtube named Brian Bartlett. Brian used to be a pro freestyle skier and had lost his right leg whilst loading his truck, when someone ploughed into him. Brian was riding using an awesome sports knee that he had designed and I was absolutely blown away. I thought I have to get in touch with this guy. So I proceeded to write quite a few mails to Brian in the hope he would give me info on how I could get one of his knee design's. More on that later........

Ok so Jamie invited me down to Pace's Chesham clinic for a few days, there I was introduced to one of Jamie's friends a lovely guy named Ollie Smith (Ollie works for Ossur a very big prosthetics company, you will probably have seen Oscar Pistorius "The Blade Runner" using their gear) Ollie had come along to offer me the opportunity of trying out a new seal in  liner. (this is a silicon sleeve that goes over your stump and holds your prosthetic leg in place as it causes a vacuum) WoW what a difference I forgot to tell you, my NHS limb was held in place by a horrible stretchy belt that went round my waist, then Velcro'd in place,it was bloody awful so uncomfortable. With the help of Ollie, Jamie had me a check socket to try out and then a fully working socket to take home and all this in a day and a half. Whilst I was down at Pace I mentioned to Jamie about Brian and his amazing knee and Jamie said just keep trying to get in touch with him.

I was well chuffed with my new socket and it was great to be able to go out for a ride without coming in with a nipped thigh or having to wear what felt like a corset. I tried contacting Brian on a few more occasions and nothing. It was then I decided to do a little bit of research and I found out Brian had a friend in New Hampshire who was using his knee design. Jason Lalla is a prosthetist and also a paralympic gold medallist skier. I sent Jason an email and he wrote back giving me his phone number and asking me to contact him any evening. Wow what a nice guy I thought. So I waited a few days, checked the time zone and rang him one evening. Well I was on the phone to Jason a good 45 minutes, he is a very nice guy, so helpful and encouraging. Jason explained Brian had had to have a revision on his amputated leg and was just coming out of hospital and that's why he hadn't been in touch, he said he would put a call into Brian and just wait for a mail. Well I practically waited by my computer lol, then one day I got an email from Brian. I was so excited. Brian went on to tell me his knee wasn't yet in production, but as soon as it was he would give me a heads up and he said he would keep in touch.

I relayed all this to Jamie who was equally excited after viewing Brian and his knee on Youtube. A few more months went by I was still getting out on my bike and having loads of fun, but  I wasn't feeling to well, kept getting a bad tummy. One day I was up Kielder Forest with a friend and my bike decided it was going to break "Oh Great all I need". So I had to take the bike back down to Stif at Leeds and they sent it away (Had to go back to the US) I got a new frame as my other one had failed at the linkage. Anyhoo my bike had been away 6 weeks and I had to go down and pick her up. It was on the way home I felt really ill, so much so my dad had to take me to A&E at the Queen Elizabeth in Gateshead, this was where I had my leg amputated. I was there for hours while they did all sorts of tests. Eventually a doctor came over and told me they couldn't find anything, apart from a swollen lymph gland in my neck. He informed me he would be passing my notes on to a consultant surgeon and I would get a letter to attend an appointment to go for a check-up. So off I go to see this consultant a few weeks later, still feeling a bit ropey and he tells me he would like to take out one of my lymph nodes in my tummy to do a biopsy on it. Ok fine I said, aww great more hospitals lol. So I go for this minor op, just a day surgery, they take out the node and stitch me up (another scar to show off lol ) and I'm told the results will take around a week or so. Eventually I get an appointment to go and find out my results. I had to go and see this haematologist, she is a great doctor I like her because she is straight to the point. "Ahh Mr Johnstone" she said"so do you want the good news, or the bad news" "Err the bad news " I say "Ahh well you have cancer" she said Oh crap I think......."So what's the good news" I ask....."well" she said "it's probably the best cancer you can get,as it's very slow".  So now I have a lifetime of hospital check-ups as I have non Hodgkin's lymphoma. It's not too bad I only have to go for check-ups every 3 to 4 months I can deal with that.

Quite a few more months go by and we are now into 2009, my riding continues. Brian contacts me saying he has a production model of his knee unit I pass this info on to Jamie and introduce Brian and Jamie to one another, more emails and correspondence. Then Jamie tells me he has some interesting news. Strathclyde University are running a seminar at Hampden Park International Football Stadium. It's called SPEEAD - Sporting Prosthetics for Everyday and Elite Athletes with a Disability. Jamie thinks that Strathclyde University maybe interested in having Brian over to do a presentation. I let Brian know and the wheels are in motion.

Brian comes over to the UK with his partner Laurie I can't believe I'm going to meet this guy who has now become my hero. I drive up to Glasgow and hook up with Jamie (Pace have been absolutely fantastic, they have paid for my entry into the seminar as well as footing the bill for my couple of days stay in Glasgow). Jamie and I set off to meet Brian and Laurie at the hotel they are staying at I'm so nervous and very excited.Upon meeting Brian I find he is one of the warmest and friendliest guys, as is his partner Laurie. We get on like a house on fire. I attended the seminar with Jamie,Brian and Laurie and had an amazing time. It was so interesting listening to the different speakers, many of which have worked with paralympians from around the world. Obviously my main interest was when Brian presented his Bartlett Tendon. Anyhoo to cut a long story short I got to spend some quality time with Brian and he said "I want you to be the first guy to trial this knee unit in the UK". The SPEEAD seminar was in the September of 09 as I recall and by the November I was again invited down to Pace and fitted with the Bartlett Tendon.....Whoooo hoooo!!!!!!.

I rode using the BT for quite a number of months,submitting feedback to Jamie,about how it felt, the settings I was using etc. I couldn't believe the difference it made to my riding, it was like having a proper knee again, my confidence on my bike just grew and grew. The Bartlett Tendon is the only prosthetic knee in the world (as far as I'm aware) that actually allows you to ride out of the saddle pedalling as an above knee amputee. Not only that the Bartlett Tendon is a Universal Sports knee allowing above knee amputees to do a wide variety of sports, things like skiing,snowboarding,moto-x,water sports, it can be used for snorkling (just remove the shock) etc.

As time went by Brian had arranged to come back over to the UK, he was going to be doing a demonstration down at Hedley Court (The place where all our wounded soldiers do there rehabilitation and get fitted for limbs)  I was going to have to give up my BT for a few months as someone else wanted to have a go. I have to admit I was gutted, but I had had my go and was really thankful to both Brian and Pace. So I reluctantly handed my BT back. I went a few months having to use my old prosthetic knee and hated every minute. So I got back in touch with Pace and struck a deal to buy the knee that had been on trial and as a thank you for all the hard work they had done for me I agreed I would do any advertising or demonstrating of the knee as and when required. So I had my very own Bartlett Tendon and a decent riding socket.

Over time my Bartlett Tendon required servicing, so I packed it all up and sent it off to Brian so he could check it out. I was really surprised to get an email back off him saying he had decided that as both Glyn and myself, (Glyn is another keen mountain biker who uses the BT) had put so much time and effort into promoting his knee unit, Brian had decided to sponsor us both and that he was sending a brand new unit over in the mail. WoW, how lucky am I.

Pace has since gone on to make me another fantastic socket. I now see Toby Carlsson who is a prosthetist at  Pace's Cheadle clinic as Jamie works down at Pace's Chesham clinic and it's a bit far to travel if I need anything doing.

I continue to ride I've tried a bit of freeriding, xc, urban on my single speed and now a spot of beach riding, well actually any riding as my latest bike my Sandman Hoggar can do pretty much anything. I've been lucky enough to have become an ambassador for Sandman Bikes and really enjoy representing their product. I'm not a pro rider, just a guy who likes having fun on my bikes.

If you have gotten to the end without falling a sleep well done, it's  just part of my Blog and I thought if your here and don't know much about me it would be a introduction into how  I've gotten here and the people who have helped me on my journey.

There's more to tell but I'll leave that for another day.



  1. LOL ...'if you have gotten to the end without falling asleep well done' ... well that's a pat on the back for me then ! LOL - your blog is so interesting I look forward to a new random installment every night ! It combines everything : Sad, Happy, Funny, Inspirational, Moving, Tearful, Motivating, Humble, Genuine, Loving, Positive and its constantly filled with Hope. You can bin Corrie, EastEnders, Strictly Brothers Voice on Ice or whatever the latest crap fad is(!!!) and just bring on the Blog ... It's real and it it rocks ! x

  2. Awww thanks Michele, it's always lovely to receive positive feedback. All of us like to feel good and have a little attention now and again. For me my blog used to do and be just that. Somewhere I could write my stories of whatever I had been up to and then wait for the feedback to come in and this bolstered my self esteem. It got so bad that I always felt if I had been out doing something I HAD to blog about it the very same day it happened, otherwise it didn't feel real and I felt very guilty.

    Anyhoo long story short I had a really bad episode of depression (something I'm not ashamed of. I don't think people speak up enough about mental health and unless you have been there you should really just Shhhhhh instead of being opinionated on a subject you haven't experienced first hand) And so through therapy I began to see that my life was kind of revolving around positive affirmation on places like Facebook and my Blog. To be honest I think a lot of people live like this.

    Nowadays I understand that I don't have to do things to please other people and I don't have to be this person people think I am just by seeing a few pictures of me and without really knowing me or anything about me. All I have to do is be myself. I'm an ordinary bloke who has gone through some extra-ordinary circumstances, then decided to get on with life. If I can make people happy on my journey, add a little entertainment or inspire that is all a huge bonus.

    Really what makes it all worthwhile is genuine friendly people like yourself and Lee as you all give me the motivation to help get me out on my next adventure....So thanks x