Adventure and Recovery Trike for Amy

Brief overview

Hi,

My name is Amy and I am 34 years old, I used to love going on adventures, spending time in nature, tending my vegetable patch, doing hiking, snowboarding and photography. In 2013 overnight I lost the ability to work, study, do hobbies and take care of myself after a virus led to a long term debilitating neurological condition called Maylgic Encephalomyelitis and dysautonomia, leaving me bedbound unable to tolerate light or sounds for several years. With lots of hard work and family support I have improved to mostly housebound and can leave the house with the aid of a manual wheelchair and someone pushing me. I have a long way to go yet and deeply miss adventures in the great outdoors where I feel most at peace and brings me joy. I would love an electric assisted trike that has a semi-recumbent seating position to gain independence in one aspect of my life, to access nature and participate in cycling which I loved pre-illness. It would enrich my life massively, be fantastic mentally and give me hope for a better quality of life and a degree of recovery. I have suffered with ME/CFS and a form of Dysautonomia called Orthostatic Intolerance for nine years. My Cardiologist recommends recumbent exercise for rehabilitation to improve my D/OI, done within the pacing restrictions of ME/CFS, hence the need for electric assistance.

 

About Amy and the trike by HP Velotechnik

I grew up in a Welsh village on the side of a small mountain which was my playground. I loved biking, snowboarding, hiking, gardening, photography and travelling. I was planning on training to be a diagnostic radiographer for the NHS after doing some backpacking in SE Asia. In 2013 my life changed overnight. I was eventually diagnosed with ME/CFS three years later in 2016 and Dysautonomia with orthostatic intolerance earlier this year, both triggered by a virus called glandular fever. I had to move back home and am fortunate to have a supportive family and partner who helped care for me. I have rebuilt from being instantly bedbound for several years unable to tolerate any light or sound or do basic daily tasks, to where I am today. I am now able to sometimes leave the house with the aid of a manual wheelchair with suspension, I am not able to self propel so I need someone to push me. I lost my opportunity at an NHS career and have had to find ways to adapt and start new manageable hobbies such as painting.

 

I still have a long way to go though, and deeply miss my adventures in the great outdoors. After a lot of research and advice from FreeTrike, who help people with various disabilities find the right semi-recumbent trike for them and their needs. I am looking at a Scorpion Enduro electric-assisted semi-recumbent trike by HP Velotechnik with a Bafang motor. It has a semi-reclined seating position, suspension and an optional throttle so I don’t have to pedal to move the trike as well as electric pedal assist. That way I can gradually build up my physical exercise and thanks to the throttle, I’ll always be able to pace my activity and get home. Only a trike with suspension will meet my needs as a normal wheelchair without suspension flares up my ME/CFS significantly faster than one with. Wheelchairs can’t cope with anything but smooth tarmac. Apart from providing hope through rehabilitation via possibly improving my dysautonomia and so in turn my CFS/ME it will also enable me to get back outside into nature which would be fantastic mentally and to participate in cycling, which I loved doing before my illness. Prior to my illness I loved spending time outside in nature, either hiking or cycling, and I really miss these activities as well as the peace and stress reduction that being in nature brings me. The joy and freedom an electric-assisted trike would give me would enrich my life massively and provide me with some degree of independence.

 

 

About my disability

Nine years ago, in 2013, I contracted the Epstein Barr Virus (glandular fever), and my life changed overnight. I was eventually diagnosed with ME (also called Chronic Fatigue Syndrome) by a Consultant in 2016, and in February 2022, a Cardiologist diagnosed Dysautonomia with Orthostatic Intolerance (OI), a condition which can be triggered by the Epstein Barr Virus and which I had from the start of my illness. Dysautonomia is a malfunction of the Autonomic Nervous System.

ME/CFS has been a very misunderstood condition but is categorized by the World Health Organisation as a neurological illness affecting multiple systems. CFS/ME has many symptoms but a few include debilitating fatigue, nausea, light and noise sensitivity, migraines, tinnitus, brain fog, flu-like symptoms, sleep problems, breathlessness, and balance problems. Symptoms are always present but worsen following physical or cognitive activity (Post Exertional Malaise). The activity could be as minor as getting dressed, a car ride, walking, reading or a conversation. The only ‘treatment’ for CFS/ME and way to mitigate against this is to plan each day’s and week's activities, never using more energy than you have and pace by doing things in tiny chunks with rest breaks. Think of a depleted faulty battery; someone with ME/CFS will start their day with their battery perhaps just a quarter full, that energy also runs out more quickly than a healthy person. This means you are then ‘running on empty' which is when damage occurs and symptoms worsen.

Recumbent exercise, which includes such bikes as in this profile, have been recommended by my consultant cardiologist, who diagnosed the dysautonomia/orthostatic intolerance, as a rehabilitation tool. As a way to eventually help some reduction in the Dysautonomia/OI, done within the pacing restrictions of CFS/ME. The use of recumbent exercise and recumbent bikes to help dysautonomia is echoed by POTs UK, Dysautonomia international and Dr Peter Rowe, a renowned Paediatric Cardiologist at John Hopkins Hospital and dysautonomia researcher. They all say it is crucial to start with exercises that are recumbent or lying down such as: recumbent biking rather than walking or upright bikes. I am looking at an electric-assisted semi-recumbent trike to regain some freedom again, be surrounded by nature, and take part in a sport I loved prior to my illness. The joy and freedom a semi-recumbent electric-assisted trike would give me would enrich my life massively and provide hope for improvements in my overall health via rehabilitation.

 

I am so grateful to the Bruce Wake Charitable Trust, Arctic One Foundation and the Sports Foundation for the Disabled for their help via grants towards the trike's total cost, which means there is less to fundraise.

 

Thank you for taking the time to read my profile. Any help, even simply sharing the profile, is deeply appreciated.