Following our last update on Tim’s dinner in February, we are thrilled to tell you that, between you, you raised a staggering total of more than £180,000! As you can imagine Tim has been thrilled with the evening’s success, it has clearly meant a lot to him to be able to help fellow sufferers in such a meaningful way. He would love to do more but, as you are probably aware, Tim’s health has deteriorated further in recent weeks and he is more limited in what he is physically able to do.
We have spoken to a number of Tim’s friends and supporters and it has become clear that they would very much like to make the dinner an annual event, to be known simply as “Tim’s Dinner”.
As a testament to Tim’s courage and resolve, and the determination of his friends to help him in his fundraising efforts, Challenging MND is delighted to announce that, on behalf of Tim, it will be honoured to host such an annual dinner, commencing next year, 2024. We hope that, with the help of Tim and his friends, we will be able to recreate an event of the same level of good will and camaraderie that Tim achieved this year.
Thank you all again for your extraordinary kindness and generosity. We will let you know as soon as we have chosen a date for next year.
#walkingwithRedgie was a memorable challenge spearheaded by Challenging MND supporter Steve Redgewell, (who is living with MND himself), 11k walk with over 200 friends and family .. along the Southbank. An amazing £137,700 raised!!
Many thanks to Steve, his family, corporate sponsors including Blackdog digital printing/PIB Group/ McGill & Partners/Aviva/Allianz/Burns & Wilcox and HDI, as well as all the generous personal donations!
Team Challenging MND have succeeded with breaking the World Record! Thanks to all our donors. Total funds raised £27,000. Special thanks to our Corporate Sponsors AIG.
MNDA have promoted our new offer in their Spring Newsletter attached. We would also like to reciprocate their support by making our 'Challenger' members aware of their Walk to D’Feet! Please support this great event!!
Following the World Record Pedalo Challenge last year where Alex said: ‘The Team absolutely smashed it and I’m so proud of everyone involved, together we have rewritten the records and created history’, his Team is planning a gruelling circumnavigation of 185 miles, around the Outer Hebrides which includes 6 causeways.
The Record breaking event will involve Alex and his fries and ex-England Rugby International Andy Long riding a high- tech Hase Pino tandem against the clock. The existing record is just over 14 hours...
Alex is in training and we will keep you updated! In the meantime if there are any Corporate Sponsors or Media who would like to be involved in this challenge please contact Liane.Iles@challengingmnd.org asap!
Alex Gibson, from Essex, is a former British decathlete who was diagnosed with motor neurone disease (MND) in 2018 and set up his charity ‘Challenging MND’ to support people living with the condition.
Through gruelling endurance challenges, including navigating the Thames in a pedalo boat last summer in Guinness World Record-breaking time, Alex has so far raised over £170,000, with money going towards helping other people living with MND to experience their own memorable challenges, and ensuring they can maintain an active lifestyle for as long as they are able.
In a personal letter to Alex, Prime Minister Boris Johnson said:
“Thank you for all that you are doing through ‘Challenging MND’ to support people living with motor neurone disease.
“Your record breaking feats of fortitude have inspired others to give generously to your charity and those donations will give the gift of memories through days out and special experiences.”
Alex said:
“I am incredibly honoured to have been recognised by the Prime Minister and receive this award.
“The whole purpose of setting up the charity ‘Challenging MND’ was to reach out to those diagnosed with this cruel, life-shortening disease and provide memorable experiences for them and their loved ones to cherish.
“I would like to dedicate this award to anyone who has been diagnosed with the debilitating neurological disease of MND. At the same time, to all the unsung heroes or supporters that are instrumental in helping them to manage through the inevitable tough times ahead.”
Pictured below: Alex with supporters on some of his previous challenges
On Friday 28th August, a team led by Challenging MND founder Alex Gibson broke the Guinness World Record for travelling the 128 miles of the Thames in a pedalo. Not only did they set a new record, they beat the previous one by almost 2 days!
"The team absolutely smashed it and I am so proud of everyone involved, together we have rewritten the records and created history."
Alex Gibson
Double Marathon Walk - CMND
18:05 start from BRFC towards Bishops Stortford RC and back home
Friday 31st July 2020
Completed at 19:00 on 1st August 2020
52.5miles
146,344 steps in total
Friday total steps = 41,883 /15.89 miles
Saturday total steps = 104,461 /47.53 miles
Pre thoughts
I wanted to walk 50 miles for some time now. Now there was no better opportunity to try my luck.
50 miles I suggested as the furthest that I have walked is 36 miles as part of the Essex Way walk in early September 2018. That was the last day of a planned 82 mile walk and getting lost for much of it completing it in 102miles over a long weekend. It was a fantastic experience and I would certainly recommend it to everyone.
However, on discussing with Cappo he mentioned why not push it out to an extra 2.4 miles and make it a double marathon and I was sold hook, line and sinker. At first it sounded a great idea but later we may have lived to regret it as those last two miles seemed to drag for ever. No regrets though and what a fantastic challenge to complete. I can now say that I am part of a small band of people to have performed an extreme event challenge on my own door-step. Nothing less simple than that.
The original idea was to walk out 52 miles but we then had the decision to make of where towards.
Bishop Stortford Rugby Club is around 26 miles from Brentwood Rugby club but we later learnt that it may be longer!
It doesn’t matter as we set ourselves the goal of a double marathon and it was a target we could walk towards.
It was a choice recommended by Cappo and it meant that I would walk to two of my clubs that I have actually played for. I played for Bishops Stortford as a colt and enjoyed the professional set up of the club. Brentwood was my own local club in which I had been brought up from minis to seniors. I later acted as the strength and conditioning coach and player for Brentwood before sustaining a ruptured knee ACL in a game against our local rivals Thurrock which resulted in me pulling the plug.
We were assisted by our new patron of the charity Andy Long (Longy) who was an absolute delight to be around. Incidentally Longy was the main head coach at Stortford for 8 years. We originally met as part of a presentation that Cappo and myself attended at Radleys glass company. He is an excellent motivational and corporate speaker and it was a real honour to take part in this event.
Covid done its very best of trying to scupper our plans. I originally didn’t want to publicise the event in fear of it being cancelled by the authorities, but by being socially responsible I am absolutely delighted that this event was able to go ahead.
As a result, I didn’t want to set up a charity page and preferred to emphasise the Thames Pedalo Challenge in late August, another fantastic event we had lined up.
It shows that the true spirit of what people will avail to and we will not be brought to our knees by the nature of this pandemic mess.
Life will go on and whilst I still don’t believe in the process of lockdown I understand the necessity to protect the NHS, a fantastic institution. Being extremely vulnerable categorised (due to respiratory based breathing difficulties associated with MND) my isolation period actually ended on the day that this walk was due to commence. Still we had to adhere to Covid based restrictions at all times.
The build-up to the walk involved making a quick address to the troops (19 in total) and I wanted to remind them of the time to come when you will look back on this as a successful event with a sense of pride. To see beyond the pain and project the mind forward.
This was a fantastic event in which I was looking to nail now for some time. There is no better challenge to complete when all the odds are stacked against you and people doubt your overall ability to complete it. This was a major factor in driving me on.
At the same time, I wanted to put the marker down and tell people that no matter what life throws at you there is still an opportunity to complete memorable challenges and push yourself into new unchartered territories.
You can only truly discover what the sort of person you are when you put your body through tough challenges like this. Only then will you truly understand that inner voice and your ability to drive you. I have always said this is when the true character of your soul comes out to speak.
I have been to some dark places and I find that by being in touch with your inner self you can make important decisions that reset your standards or moral compass in your life. I am getting to know my inner self quite well now a-days. It takes a particularly tough training session for you to reach this particular state of mind and for that inner voice to come out later with the emotional turmoil’s that go hand in hand with dealing with the news that you have been diagnosed with a life terminal illness.
Those who have driven themselves to this state will recognise this as the inner voice that cries for comfort and the easy approach. It is your primary comfort support network e.g. your mum. The person you reach out for comfort when times are tough.
I have always reflected on my life as a series of markers or milestones and this was certainly one of them. I will look back on this challenge in the years to come and say that I managed to exceed people’s expectations and complete it. With which I will reflect with a total sense of pride. It is another notch in your life’s challenges and one to be immensely proud of.
Further I wanted to take the opportunity of making the best use of my own working body (although limited) and I suppose it was a celebration of my current ability to walk. This will be lost over the coming future unfortunately. It is funny really, how most people accept any terminal illness as a decision to give up the ghost and resign to a life of feeling sorry for oneself and accept sympathy from other people. This is not me and it was my way of saying although I have been dealt the cruel hand I want to rise up and attempt to reset this stigma that goes hand in hand of immobility and MND. A beyond expectation challenge.
Building up to this event (approx. 10 days prior) I took the dog Ted on a long 10 mile walk through Thorndon country park with my new FES system (which basically send electric shocks to activate my muscles – similar to a TENS machine) and my feet terribly suffered a week before the event started.
Arising from the drop foot which causes the feet to drag which results in bruising around the toes and toenails being damaged. I am certainly no-where as efficient as I used to be! In fact, I would say with the jerkiness of the movement the foot dragging and adapted biomechanics I operate at 40% of the optimal walking I used to perform.
Furthermore, because of my poor balance I have to constantly scan the ground in front of me for any potential hazards like pot holes, tree stumps or even changes in ground levels. It is quite tiresome as I have to be fully focussed at all times and requires deep concentration. Something you take for granted when you’re fully functioning.
Further, cramps hit me hard too. On this 10mile walk I fell over twice with about 10 stumbles or near falls and felt that if I extrapolated this up over the 52 miles a best case scenario would be to fall over 20 times. So I needed to protect myself properly. To make it worse when I fall over now, in an attempt to rescue myself I try to shift the muscle too quickly which initiates a severe bout of cramp.
To be honest it can be quite comical when someone sees me fall over but with MND you note that your street cred has long gone years ago and to be honest I don’t care what other people think anymore.
The emotional lability can kick in at times causing me to get a severe burst of giggles at inappropriate times like falling over. Funnily enough this is made worse when I try to discipline my children whom unfortunately know this side effect and look for me to start laughing, which inevitably I do!
It can be an issue in the work place environment as people don’t think I am taking the conversation seriously enough. Oh well there could be worse symptoms I suppose!
This emotional lability is probably the bodies mechanism to cope with the inner turmoil that MND is causing to the body and acts as a vent to relieve some frustration and underlying anger.
When I go out in the public nowadays it takes a certain amount of time to get ready and kitted up. The FES system requires a good 15 mins to set up. In addition, protective gear includes elbow supports and knee guards together with a Ribcap hat and padded hip pad shorts which takes another few mins to prepare.
With my dexterity going it is becoming increasingly frustrating to do fasteners, tie shoelaces and put buttons on. When you have lost the use of your hands over time it just is another frustration that you can do without. There are times when I can or do scream out in shear frustration. People don’t understand this but all the time these minor irritations are adding to an increasing wave of frustration which has to be vented out at times.
The whole preparation for venturing out is like going to battle every time I leave the house. Using the walking stick for the poor balance would help to minimise any damage arising from the falls too. Although it is not totally fool proof and I have actually tripped up over the walking stick itself! Generally, I have days where I fall up to 3 times per day.
The concern I have is that there is a very unforgiven surface to fall onto on this challenge! When I fall onto surfaces in the woods (where I often walk) I am able to brush myself off and get onto my knees to stand up. I would say though that its becoming increasingly difficult to get to the feet if there is nothing to lean on like a tree though. One particular time I fell over in the garden and it took me 20 minutes to get back to my feet. No one was around to help me. I suppose this is my last cry out for independence and whilst I know I may become dependent on other people in the future for the time being I need to do this alone!
Cappo devised a great idea to use a horizontal pole for support between two guys in front and behind and either side of me and whilst it worked originally on both sides. I still used the walking stick to manage the balance and act as an aid whilst grabbing the pole on the left hand side. People must have thought that either I was totally out of the game or understood the bigger picture. Again who cares!
Considering how much of the walk was completed on the road, the majority of people were considerate and gave us enough space when overtaking. There are always a few selfish individuals who don’t understand the nature of this event. Luckily we only came across one or two of these characters.
This was soon to change. Approaching the half way stage I noticed that the FES machine was not stimulating the right leg enough and I had to increase the intensity to 10 which under normal situations would be unbearable. It is like being zapped with an electrical shock each time you walk. The FES machine triggers both feet so you can imagine how it feels to be zapped continuously over 25 hours. The only limitation of the FES system is it is particularly draining on the body the next day but this was not an issue as there would hopefully not be a next day.
As a result, from 25 miles out we decided to bin the FES and use two friends to prop me up under each arm. This was much better for a period of time but the stumbling certainly got to me and the toes!! On the later parts of the walk when I felt an uncomfortable and stumble forwards, I knew that realistically I had lost another toe nail.
I probably lost 4-5 toenails over the walk but I had always expected this from the outset. The heavy bruising, bleeding and swollen toes were justification of this. It does take a particularly long time to lose a toenail and one can understand how it was used for torture! No matter how you protect your toes they are delicate and subject to being lost. After all, when you contemplate that both your foot strikes the floor over 140,000 times it is a terrific amount of pounding and stress in that area.
To be honest it is fine to be held upwards for a brief period of time but when you have to walk arm in arm as though you have been escorted out of a pub by bouncers for 25 miles the novelty factor soon evaporates. It must have been hard work on the guys helping me and it is at times like this when you understand how lucky I am. I could not have completed this challenge alone. You guys will always be remembered!
To have a fantastic support network of good friends who can dig in was a real treat. The support was tiresome for me and I certainly felt in the arms. I was physically bruised on the arms but it was certainly worth it. We tried adopting various arm supports to manage through the issues but I always reverted back to the most natural carry which made the bruising. The only time more heavy-going. I have lost toenails was on the Essex walk two years ago.
It took for ever to grow through and then they were deformed. This is meaningless in the pursuit of the happiness which I shared with a band of good friends who joined this inner circle of respect and became brothers in arms. It is a life-long memory which I will take to my grave. Many people will lead their whole lives never feeling this unity and respect and we stood together for that period of time and all barriers were broken down. It was very much in the moment, you had to be present to understand it.
It is an amazing thing really. You come to a challenge with a particular hierarchical upbringing, but this soon disappears as you become equal in trying to conquer the challenge. It really sets everything into perspective and you form a bond with those you would never consider in everyday life.
Being in touch with nature and doing such a basic challenge really pulls you back into touch with the basic elements of life. In fact, when you are in touch with nature it makes you appreciate just what you have and I would recommend everyone to do this at some point throughout their lives. You will only truly understand more about your true life when you are brought back to nature. As I said before, you will only truly understand your inner voice.
There is something very fundamental about this that people never touch on in this fast paced world we live in. It is a great way of filtering out so much negative aspects of your life. It acts as a sieve for all that junk you are exposed to and brainwashed into believing. I have given up with following news as it only infuriates me at a time when I don’t need negative emotions.
My vision of completing this challenge was always etched in my mind. When the going got tough I was able to dig deep and draw upon this image of being at the finish and congratulating everyone which summoned up an inner reserve of strength to fight on and gave me a real boast.
It was particularly painful at some points but I was able to look ahead and imagine myself at the finish line. The welcome home party was fantastic. Although not crowds of people cheering it certainly was a hero’s welcome to myself and it made it so special for me and everyone else.
To be recognised in that manner was something I will cherish for many years to come. It was lovely to be escorted home down that finish line of the car park and people showing great support or appreciation for what everyone had achieved. It really capped it off as a special event. I would like to thank everyone who joined us in this magical time.
We are truly delighted to announce that as of Friday22nd March 2019, Challenging MND officially became a recognised charity!
To get to this position, it has been no mean feat and has taken a number of months of exceptional hard work and dedication by, not just those at Challenging MND, but many other people who have all made significant contributions in order to help us gain this charity status.
Whether you have bought a raffle ticket, helped us raise money through a challenge, completed a sponsored silence; or given us invaluable advice; you are now a part of our fantastic journey in being able to assist people living with Motor Neurone Disease fulfil memorable challenges.
We understand that the hard work starts now but everyone at Challenging MND cannot wait to start making unforgettable moments for all of our future beneficiaries.
We look forward to seeing you at all of the upcoming events we have lined up for 2019; and hope you will be able to help us making this charity an amazing success as Alex and the rest of the team know it can and will be.
From a selfless wish to help others with this condition, Alex’s dream of creating incredible opportunities for people living with Motor Neurone Disease has now become a reality.
Again, this has been down to all the incredible support we have had so far and as aforementioned we hope to gain that much more traction going forward with your willingness, continued encouragement and support.
Thank you.
The Challenging MND Team.
#InspiredByGibbo
Get Involved!
Get Involved, become part of the team and Make A Difference!
Become a beneficiary – if you are living with MND, or know someone who is, and would like to benefit from what we do, then please get in touch.
https://www.challengingmnd.org/challenge-grant-application
Fundraisers – can you cycle, walk, run or simply help raise awareness. Let us know your ideas!
Email: info@challengingmnd.org
Volunteer your time – do you have a talent or expertise you can bring to the Challenging MND team? Please get in contact - Email: info@challengingmnd.org
Make a Donation – we always encourage people to get involved directly in our events or challenges – but if this is not possible you can still donate directly at: https://www.challengingmnd.org/make-a-donation.
I was diagnosed with Motor Neurone Disease just over a year ago. Yes, it’s terminal. The tragic news hit me at a most unexpected time in my life: I was on top of my game at work, with family life and my health. Being told that I will have the same fate as Stephen Hawking, when I had everything to live for, was utterly devastating. How could this have happened to me, to my family? As an ex-decathlete, rugby player and nutritionist, I had always lived a healthy lifestyle which made it even harder to accept.
The chances of getting this incurable neurological disorder are one in 50,000, in any one year. These odds drastically reduce for those below the age of 40, which I was. So, the probability of me being diagnosed with MND were incredibly rare. However, when you compare it to dying from HIV or from a pedestrian death which funnily enough have similar odds, it makes you reassess life in general.
Being diagnosed was something I never thought we would go through. It was one of the most difficult times of our lives: an emotional rollercoaster. I was overwhelmed with all sorts of emotions: fear, anger, dread, and a deep sadness that I had never felt before. For the first time, I got a taste of extreme anxiety for the future. What would happen to me, my wife, my kids? How would I cope? How would they cope? What would my decline be like? How fast? How would it all end?
Working through these thoughts and accepting the diagnosis was probably one of the biggest challenges I have faced. It was a real struggle. I was trying to deal with it as best I could but soon realised something needed to change. I decided that I could either be owned by this cruel disease or take control and manage it. Having gone through each of the natural stages to grief, I found the key was to move to the acceptance phase as soon as possible. This journey will be different for everyone, but moving through it is the aim. Adaption is my new best friend!
Once you’ve accepted your fate, you can then face the future with confidence and move on with the new type of life you've been given. Having been an athlete, making the most of the time I had left with a functioning body, with my family and friends around me was key. I wanted to create unforgettable experiences that would stay with me and my family long after my body had failed. And this intention had never been stronger.
Taking charge of my mental attitude literally saved me. I knew I would need a great deal of fortitude to deal with MND, as would my family, so I started working on this. Rather than consider the disease as a deadweight around my ankles, I now look at it as an opportunity to do something meaningful for myself and others. It is a positive challenge which I plan to tackle head-on.
Setting up our new charity ‘Challenging MND’ has thrown me the lifeline I needed. It allows me to put others first; those in more dire need than myself. My dream is to establish this charity as a sustainable one whilst I am still able to. Increasing awareness is very important to me. The average person in the street would not know much about MND or that typical prognosis rates are 2-3 years following diagnosis. My aim is to help those diagnosed with MND to create memorable experiences that enrich their lives.
Research into new drugs and technology certainly has its place. I still think that we are years away from finding the answers. My intention is to look after those in the unfortunate time trap of suffering with this disease. By ensuring we provide memorable occasions or events with those closest we can help to relieve any heavy burden, and oh what a burden it is!!
The lessons I’ve learnt so far is that you never know what is around the corner. As such, you should enjoy the time you have as best you can. MND will eventually defeat our bodies but it will not defeat our minds. Challenging MND will ensure that any memories we build will last forever.
Alex.
Inspired by Alex’s story? Please get in touch if you have been diagnosed with MND yourself and are interested in completing a challenge. We also welcome enthusiastic volunteers and fundraisers to support our cause.
