Affair with my MStress

The use of an image of wires bared back at the ends is often used as a visual image to illustrate the clinical process of Multiple Sclerosis. It shows how the nerves might appear under a microscope with their damaged myelin coating. Faulty electrics can be fixed, rewired, replaced. Electricians, Engineers even DIY enthusiasts can make the necessary repair work and everything is good again. I trained as an electrical and electronic engineer and used these skills in my early career. The wires bared back image might be too simplistic, it doesn’t represent how Multiple Sclerosis manifests itself on both emotional and sensory feelings and on movement and strength.

How does it feel like to have Multiple Sclerosis?

This aims to express my feelings and share the impact of Multiple Sclerosis on my life. This is my personal account and although others may relate to some or similar issues, it must be acknowledged that my issues will not be the same for them as Multiple Sclerosis is different for everybody.

Multiple Sclerosis typically affects both men and women between the age of 20-40. In my case I was recently married with a baby boy and enjoying life with family and friends. I would consider myself fit and healthy. New career opportunities were developing. Life was good!

Last year we celebrated being married for 25 years and for most of that time I’ve been having an affair with my MStress.

Affair – a definition

‘an event or sequence of events of a specified kind’

 

Over the last 10 years in particular my psycho MStress’ strength has been influencing all aspects of my life. It’s growing inside me like the Alien in Ripley’s stomach. It can overpower me at any moment without warning.

Like many men I want to protect my home and family; be man of the house, a strong dad, DIY guy. I want to be able to play ball games with my children and pickup my grandchildren when they fall, move heavy furniture and climb up ladders and do simple home repairs. I can’t do these things now because I now lack the strength, speed and co-ordination.

My sadistic MStress has a big effect on my balance. Poor balance makes it almost impossible to lift and carry anything delicate or heavy. I never appreciated how much balance influences strength and power. As well as gravity, my MStress introduces multiple extra forces to cope with. I’m always dropping things; I just can’t be trusted carrying anything precious like your crystal glass of wine or china tea cup or even new grandson.

My MStress is like a mad Puppet MSter cutting my strings without warning. This makes my foot drop, tripping me up or I can be thrown to the floor in a heap and left me to claw my way along to reach something solid to lean on or to slump onto a chair. I can also be immobile due to stiff legs.

My Bunny Boiler MStress has forced me into drugs – my fridge is full of hypodermic syringes and I have a sharps bin in the cupboard. My first drug was a intramuscular drug, a big fat needle I had to push into my thigh muscle. It was only taken once a week but I developed a fear of this 3inch nail. To help overcome this, I tried to coincide the jab with an ‘action’ on TV like a free-kick during Match Of The Day. Sometimes this didn’t work and I’d have to ask my wife or wake one of my children asking them to “come and stab your Dad with this!” There is a lot of collaboration and great research by the global Multiple Sclerosis organisations into a possible cure and currently a number of different disease modifying drugs are available and under test. My second drug was intravenous and similar to chemotherapy treatment. It was so poisonous that as a warning it was dyed a rich blue and this made my urine the same colour for the next 12hours. These poisons made me lose all my hair – everywhere! I looked very sick but felt great for the following 12 months! The other dramatic side effect of this drug and hair loss I still have is feeling cold most of the time. I now have another hypodermic drug. These pin-like needles are not so scary. I use this every other day subcutaneously in my legs, stomach or arms.

My MStress controls the clothes I wear. For comfort, for ease getting on and off and because I love them, I wear retro style trainers as much as possible. Without warning my wicked MStress makes them feel like cheap football boots two sizes too tight, which crush my toes. These boots have metal studs breaking through the soles stabbing my feet with every step. The studs can make every surface feel like ice.

Frequency, Hesitancy, Urgency – Well there’s a contradiction in terms but terms given to my bladder. My MStress must have a sick sense of humour – I’ll be the one stood up at a public toilet urinal waiting and waiting and waiting. Other men will come in and go and I would still be stood there. Eventually I decide that nothing is going to happen and so I’ll zip-up, wash my hands and leave. I wobble my way back to where I was originally but then have to turn back and return as quickly as possible to the toilet. At other times I could be standing cross-legged with my hand creating some pressure desperate to get to a loo only to find there it has always got someone else in.

My evil MStress can try to influence where I go and when I go and this has had an impact on my career and money. I have been fortunate to work with some amazing teams, travel to some amazing places and meet some amazing people. Multiple Sclerosis forced a change in career direction and in many ways has made me a better, more accomplished person. I have been able to use both my engineering and commercial skills and maintain contact with and create many new national and international business contacts. I have also developed many new skills too. Multiple Sclerosis has also created a deep appreciation of life living with a disability. Through our Triple Tread® project I have been able to meet some extraordinary people and connect with some amazing organisations.

So what does the future hold for me and my MStress? More wobbling, more bouncing off walls, more falls and more drugs for certain but also more opportunities. I believe my future includes support for others coming to terms with Multiple Sclerosis and the issues their MStress or MSter throws at them. I am particularly keen to support those who are newly diagnosed.

Championing sport and fitness is of particular interest. I will continue to use my skills and knowledge to create cool, attractive and functional solutions to improve confidence, self-esteem, health and wellness. Exercise is important for everyone but disabilities throw additional challenges including those of balance, pain, fatigue and spasticity.

I am fortunate and thankful for the love of my wife and sense of humour we share that gets us through each day. I am grateful for the support of my family and friends. I know they will help me in my continued battle with my MStress and together we look forward to new challenges ahead.

 

www.tripletread.com

www.mphsupport.com

 

 

 

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Time to innovate

I have found starting a business to have many parallels to living with Multiple Sclerosis.  They both have many challenges and balancing issues.  Each step has to be taken carefully so not to make a mistake, trip up or fall before reaching a goal.  Steps are easier to take with the help of family, friends and a supportive network.  Time is precious and I am conscious that it must be used as productively as possible.

We needed to take time to solve a problem shared by all tadpole trikes including the recumbent style.  Geometry makes the frame lean the wrong way or away from the corner when turning.  This creates a strange and unusual sensation and could be unsafe for riders of upright trikes. I’m proud to announce WE’VE SOLVED THE PROBLEM! and have been investigating a patent application.

It has taken a long time building a new network of suppliers and partners, learning which businesses can deliver and building trust with quality manufacturers. UK fabrication and prototype development has taken a long time and created long delays.

TTBritain2

We have spent this time exploring a number of funding competitions and other awards to aid our development costs.  They offer a great opportunity to raise the issues of Multiple Sclerosis, present the Triple Tread trike and share our story.  Success in the competitions would mean stellar acceleration of the business, new employment, faster product development and manufacture and would mean we could bring the trike to market sooner.

Many competitions are launched by government agencies to encourage entrepreneurship, partnerships and growth with the ultimate aim of generating tax revenue. The competitions all have themes, strict criteria rules and include a complex application process.  The time taken between submitting an application and receiving a response can seem forever.

InnovationVoucher

I was very pleased to find that the Innovation Voucher scheme run by Innovate UK was perfect for innovative start-ups such as ours. The competition landing page features an image which looked to me like a Golden Ticket from Willy Wonka’s Chocolate Factory.  I am delighted we were successful but unfortunately there was no shiny coupon.  The Innovation Voucher award has enabled us to engage with a patent attorney to assist our patent application for our innovative steering and tilting system.  We’re calling this new geometry TiltrahedronTM.  It’s great to think we have created a new patentable technology in an industry that first started 150 years ago.

The strict timeline to be followed when submitting a patent application has meant we could not publish any new images or share information on our website but nothing is stopping us now!

Keep an eye on our website for updates, pictures and videos.

The Triple Tread team wish you a very happy and safe Christmas.

Thank you to all our friends and followers for your help, support and encouragement during 2015.

We look forward to 2016 – The Year of the Triple Tread TRIKE!

 

http://www.tripletread.com

http://www.mphsupport.com

Turbo boost

Glastonbury and Wimbledon. It must mean summer has finally arrived!   The sun does seem to give a boost to many people; many more smiles.

So far this year, my MS symptoms have caused my toes, fingers, nose and ears to feel constantly and often painfully freezing. I’ve been longing for the day since last summer when I can wear a t-shirt, sit in the garden and enjoy some much needed vitamin D.   Unfortunately, higher temperatures can cause additional problems for many MS sufferers. Known as Uhtoff’s Syndrome, the result of the compromised myelin, elevated core temperature can cause a short-circuiting of nerve signals which in turn creates additional neurological fatigue symptoms. Just sitting in the sun can make me exhausted, my ‘battery flattens’ and my legs feel like lead weights. Not easy to balance and stand-up. The MS Society have published a fact sheet on the effects of temperature in MS: http://www.mssociety.org.uk/ms-resources/hot-and-cold-effects-of-temperature-on-ms-factsheet

These unpleasant symptoms re-affirm the importance to include an electric motor and a ‘Get me home’ button or ‘Turbo boost’ to our final trike design. I really feel this would be a great comfort for when neurological fatigue sets in.

We’ve been working hard to further develop Triple Tread. It is hoped the rotational leg movement of cycling involving different muscles than those used in walking can overcome foot drop issues and although exercise can raise temperature, the cool air flowing over the rider will keep them feeling significantly cooler.

We have bought a Turbo trainer, which gives me the opportunity to ride one of our early prototypes. Our design allows it mounts to the rear wheel cycle like it would on a standard 2 wheel bicycle. British Cycling suggests using Turbo Trainers to maintain fitness levels and improve strength:

https://www.britishcycling.org.uk/knowledge/article/izn20140122-Training-Indoor-Training-Heaven-0

During the Spring months we have also been busy exploring ways to fund the next development stages of Triple Tread trike. We entered Virgin’s Pitch to Rich competition and were chosen to give a presentation at their launch event in Manchester. It was a great opportunity to share our story. We presented on stage alongside founders of Innocent Drinks and Eventbrite (Richard Reed and Renauld Visage).

Triple Tread at Virgin Pitch to Rich

Unfortunately we didn’t make it through to Pitch to Sir Richard but we do feature in their highlight video:

http://www.virgin.com/entrepreneur/wrap-up-pitch-to-rich-2015-uk-tour

We were very pleased by our success in Start Smart Awards run by Business Growth Hub which is funded by European Regional Development Fund. They recognised Triple Tread’s innovation. We won Most Innovative Startup!

Business Growth Hub award

We are also exploring other competitions, which will boost our success further. I look forward to sharing more information soon.

http://www.tripletread.com

http://www.mphsupport.com

Triple Tread Cheer – Happy New Year!

It’s the time of year when we often reflect on the year that has passed and look forward to future prospects. Last year was very special for our growing family as we became grandparents for the first time to baby Amber who is adorable.

Support for Triple Tread is also growing and developments to the trike design will continue into the beginning of this year. We have partnerships with academic researchers and trike manufacture specialists, who will be working hard with us in order to bring Triple Tread to market.

We look forward to the European Bike Show in Germany later in the year when we can get chance to meet more of our Triple Tread followers.

http://www.tripletread.com

http://www.mphsupport.com

My Flat Battery!

I attempted to do a small task the other day; it should have taken a minute but instead took several hours! I was using a cordless power drill to act as a simple screwdriver. The battery ran out and the drill felt heavy, solid and motionless. The job then came to a frustrating, sudden halt. This analogy relates exactly to the way my legs feel when neurological fatigue sets in and they refuse to budge. Consequently I end up on the floor in a heap. I can’t just slot in a new set of Duracells and instead I have to stop, rest and recharge everything very, very slowly!

I have been testing out the new prototype trike this week and Triple Tread has become my saviour. Not least because I can get around without falling! I feel free on my trike and good about myself, as I am achieving independence. Not having to rely on my wife to hold me up while I try to drag these two dead weights along beneath me is a fantastic feeling.

Braze welded steel tubing       TripleTread with steel frame

The steering mechanism means that I am not in danger of tipping the trike when I corner and I feel safe on uneven roads. My legs are weak though and I am getting to know my cycling distance limits. The pedalling motion is so much better for me than trying to walk anywhere as I have foot drop. I swing my leg out to the side in order to move forwards and I try to get it high enough so not to trip me up. My posture is affected by these gait difficulties so I end up swaying around like I have had ten pints and usually end up crawling!

MS Society T-Shirt

I don’t have to worry about my lack of balance while I am pedalling along on the trike. The rotational movement uses different muscles than when walking. At the moment, I am researching an electric motor assistance option to add to Triple Tread, so that we can press a “get me home button” for the return journey! I think it will also come in handy for those steep hills too.

http://www.mphsupport.com

http://www.tripletread.com