A Ramsgate former community volunteer has ‘cycled’ 100 miles as part of the fundraising efforts to buy her a specialist wheelchair.
Nikki Nash, 39, volunteered in various roles working with families, running parent and toddler groups, administering for a pre-school and seasonal community event co-ordination until her mobility and health declined in 2017.
The mum-of-two lives with several complex health conditions, including Functional Neurological Disorder which causes symptoms such as paralysis, muscle tremors, dysphagia, bladder and bowel dysfunction, nerve pain and fatigue.
Nikki also has Hypermobile Ehlers Danlos Syndrome a connective tissue disorder which affects her joints by causing pain and dislocations/subluxations and can affect skin, tendons, ligaments, blood vessels, internal organs, and bones.
She said: “This has affected my mobility for a long time and caused hernias/prolapsed organs and along with the FND means I am wheelchair reliant although since rehab I can walk with support for a few metres using braces on my ankles and hips and using crutches, but this must be limited to protect my joints and pain/fatigue levels.”
Other conditions are Fibromyalgia/CFS which causes chronic pain and fatigue, IBS and other symptoms; chronic migraines; Hyperhidrosis which causes sweating; allergy to the sun/UV rays that causes inflammation, rashes, and flu like symptoms and a recent diagnosis of ASD (autism spectrum disorder) with Nikki struggling with sensory processing.
The specialised wheelchair and necessary accessories will cost around £6,500 but will support Nikki in all her health needs and give her independence.
She said: “The reason I need the specific wheelchair frame and ergonomic motorised wheels is because I am unable to use the motorised wheelchairs with joysticks as they are too big for my home. I will also be unable to hoist them into my adapted car as they are too heavy for the hoist I have and they don’t fold down small enough for the car.
“The wheelchair I am aiming to get is a separate smaller and more supportive wheelchair frame with E-motion wheels fitted to it. It will be lightweight and small enough to fit in my adapted car using the hoist and will also have anti roll back and anti-tipping mode meaning I won’t need to worry about going up hills or over ramps and will have special wheel grips that help prevent friction burn and that gives better grip when manoeuvring.
“It will mean I can be more independent getting around and I can go out even when I don’t have much strength and the wheels will do the hard work for me so that I won’t have to when I am in pain and it will protect my joints from being antagonised.
“The frame will support my back and joints whilst the back will be lower down so it can be lifted by the hoist into the car as it is rather than needing to be folded down each time. I will also have a cooling pressure seat to help prevent pressure problems and keep me cool when sitting for long periods of time.”
Nikki is at the end of a 16 week stay at the Wolfson Neurological Rehabilitation Centre in London.
She said: “I have been having an in-stay for intensive MDT neurorehabilitation after being referred by Kings hospital neurologist team for one of my conditions, FND. I have been here for four months and am due to go home to my family.
“The centre gives neuro rehab for all sorts of conditions including patients who have had strokes, brain damage, have a neurological condition or are amputees. I have met some very brave people whilst here.
“Being at Neuro rehab has been tough being away from my family and friends, but it’s also been a good experience as the team have helped me to build my core muscles up, giving me more stamina and strength and helped build my confidence in being a wheelchair user whilst also helping me to learn how to manage my conditions so that I can have a better quality of life day to day.”
Family and friends persuaded Nikki to launch a fundraiser to help pay for the chair and she says she is “blown away” by donors who have already helped raise £3000.
There have also been quizzes hosted by family and friends, a prize bingo run by Nikki’s husband Ken, friends at a local singing group donated money raised from a concert and a large donation from a wheelchair funding charity that no longer provides the service, but wanted to help. There have also been a number of anonymous donors.
Nikki says it is this generosity that prompted her to devise her own 100-mile challenge.
She said: “After seeing everyone doing so much towards helping me, I felt that I needed to try and do something too rather than sit and let everyone else do all the hard work.
“After being trained to use a wheelchair assessable Motomed machine in my physio sessions for cycling, I decided to set myself the challenge to cycle the length of my way home via favourite landmarks which was just under 100 miles.
“When I first started rehab, I could only cycle for a couple of minutes. Obviously, I would not be able to do 100 miles in one go but I set the goal of working my way up to cycling safely within physio sessions up to ten miles a day in short sessions and aimed to do a sponsored scenic cycle home for 10 days to reach 100 miles altogether.
“I created my own digital art for various landmarks making a map which I pretended to stop off at a different location each day. I cycled 10 miles in stages throughout the day to reach a different landmark each day until I reached home and so I could show friends and family my progress using the map.
“Landmarks included Buckingham Palace for a cup of ‘rosy lea’ with Her Majesty the Queen, Big Ben, London Eye, Canterbury Cathedral and Reculver Towers and others until I reached home to Thanet.
“I finally completed 100 miles on Wednesday, August 24. Cycling that much is not something I can continue doing regularly as it did take a lot out of me but it was worth it to show that I am determined and not just expecting others to help me. It felt like such an achievement to complete something I would never have been able to even think about before starting rehab.”
Nikki hopes the new chair will giver her more independence and some quality time with family, including youngest son Taylor, who is 13.
She said: “Being able to get my specialist wheelchair will mean that when I am home from rehab, I can get out and about more easily and start to enjoy day to day life again, especially with my son who has helped look after me so well considering he is so young.
“We are so proud of him for what he does as he’s growing up to be a very caring and thoughtful boy. Being able to go out with him and my husband more easily is important to me and a big motivator for working towards getting the wheelchair I need.
“I also hope to perhaps one day get back to some volunteering in my community if I can when I’m well.
“I will still have to manage my health conditions going forwards, but it will be so much easier to once I have the right wheelchair for my needs and will be such a weight of my shoulders.
“My family’s motto is ‘Where there’s a will there’s a way!’ and that has helped us get through everything so far so I trust we will continue finding our way somehow and we know we are not doing it alone.”