My name is Samantha (Sam) Broad. My husband (Tim) and I have had a busy life running a toy shop called Lighthouse Toys and home educating our 3 children. However, four years ago I suddenly became ill which has resulted in me needing a wheelchair to get outside the house. I still don’t have a diagnosis. I am under 3 different departments - mitochondrial diseases, metabolics and neurology at The National Hospital for Neurology (part of UCLH) in London.
The most debilitating symptoms are the myoclonic jerks which can occur in all 4 limbs, trunk and neck. These occur every day at any time of the day and night. Two years ago I had 2 periods of 24 hours when I was free of myoclonic jerks but it has been every day since then. In addition I have extreme fatigue, brain fog, weak muscles, altered temperature control, pain, liver involvement and possible asthma.
One of the consultants from UCLH told me that I need to limit the jerking as much as possible and the main way I can do this is by sitting in a reclined position with my feet raised. The worse the jerking, the more frequently I have to alter my position. Jerking increases fatigue which means that having a wheelchair that supports my body and is easy to change the position helps me to enjoy a longer period of time outside the house.
My current chair doesn’t support my body well and Tim is struggling to push me as his wrists are weak. This means our trips out of the house are a struggle. I would love to be able to go out for day trips again. I want to be able to spend time with my children before they leave home and to make up for all the lost day trips, holidays and “normal” life.
The search for a chair has been enlightening! NHS are offering a manual chair that is often used by people in nursing homes. But I am relatively young and want to be able to move independently, visit places, go for a “walk” with my family etc.
I went to a mobility show and tried many different chairs. The only chair that worked for me was the Karma Mid Lectus. I was having myoclonic jerks sitting in my current wheelchair. I sat in the Karma Mid Lectus and changed my position using the joystick. The jerking stopped and I was allowed to have a drive. I only went a short distance but the feeling of freedom was overwhelming - I was moving without anyone pushing me, I was moving where I wanted to go. I got back to the stand and burst into happy tears.
A few days later I test drove 2 different electric wheelchairs from the range. The chair I have chosen easily drives on the pavements, rough ground, grass and dropped kerbs. The controls allow me to alter the position of the seat and I can tilt the seat, alter the angle of the backrest and raise the footrests. I won’t have to ask someone else to manually alter the backrest to reduce my neurological symptoms.
The chair has a small turning circle so I can use it inside the house or outside. Tim regularly has to take a day off work when I have a bad day and struggle to walk in the house. With this wheelchair I will be safe to move around downstairs. It even raises up so I could use the kitchen to get a drink and food.
Another set of controls will be placed on the back of the wheelchair so that whoever is with me can take over the controls if I get very fatigued or I am jerking too much or I am ill. The chair costs such a lot as I need all these extra functions. However this incredible chair will give me back some freedom. I can live rather than exist. Please help me to be able to buy this wheelchair. The cost of the chair is £21,842 and then I will need to buy ramps to get the chair into the car and house.
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