My name is Anne-Marie and I'm raising funds to purchase a powered wheelchair for myself from Platinum Mobility. Platinum Mobility is a family business in the UK that specialises in providing refurbished wheelchairs with new batteries at a reasonable cost. The type of chair that has the features I need would cost approximately £12000 if purchased brand new so I have decided to buy a high quality second hand one instead from this trusted family business. They have a good reputation for their customer service, the standard of their chairs and the ongoing aftercare that they provide.

A bit about my diagnosis and disability journey - I have a rare, progressive neurological condition called Orthostatic Tremor (OT) which currently has no known cure. Little research is being done into it as it is too rare for pharmaceutical companies/scientific bodies to invest their finances into something that few people have. However, what is known about OT is that it is caused by a problem in the cerebellum part of the brain, causing a high frequency tremor, too fast to be seen by the naked eye, in the legs when standing still. A surface EMG test will pick up the tremor and listening to the calf muscles with a stethoscope will reveal a sound similar to rotating helicopter blades! The cerebellum sits above the brain stem and is responsible for voluntary motor movement, balance, equilibrium and muscle tone. People with OT often have ataxia as well which causes poor coordination and affects the ability to balance, causing a profound and disabling sense of unsteadiness.

My OT symptoms started in my twenties (a few decades have passed since then!) but I was not officially diagnosed until a few years ago after being referred to the National Hospital for Neurology and Neurosurgery in London. I'm young to have OT, considering it usually affects an older demographic. It is not well known in the medical world so I was diagnosed back then with chronic fatigue syndrome as profound, debilitating fatigue does often accompany OT. For a long time I was reliant on a rollator style shopping trolley with a seat to get around and then a few years ago I self bought my little purple mobility scooter. NHS wheelchair services gave me a manual wheelchair - I can't go far in it as it is heavy and needs to be self-propelled or have someone available to push it. Although I was housebound a lot the combination of these mobility aids at the time was a gamechanger in enabling me to sometimes get out of the house to attend hospital appointments, go to the shops, the theatre, church or attend occasional social functions.

Although I am ambulant I cannot walk far. Walking relieves the tremor but not the symptoms caused by my other conditions. Anytime I stop still it’s usually not possible to remain standing for more than a few seconds due to the tremor. I also cannot sit to rest in a normal seated position as this causes the tremors to return to my abdominal area when sitting completely upright. I have to be reclined to achieve any relief from the tremors.

Unfortunately I am missing out on connection and activities more and more as I now rarely go out and have become increasingly isolated from friends and participating in society in general. The things I used to love to be able to do that improved the quality of my life I am now no longer able to do. Alongside the OT I also have autonomic dysfunction which means I need to have my legs elevated to improve blood flow. This was really brought home to me recently when I met with family in a restaurant for our annual Christmas meal. It was the first time I had gone out anywhere for several weeks and I was only able to remain seated at the table for 15 minutes.

The wheelchair I am hoping to purchase has a seat that can increase in height like a mini lift. This will enable me to function better around my home as I'll be able to sit comfortably at the worktop height in my kitchen and to reach into the cupboards above. It also has a tilt in space function which means the seat can recline at various angles when necessary and will keep my knees/legs at a comfortable level. The cost of the refurbished wheelchair, the warranty, the insurance and personal adjustments to be carried out by an engineer will come to approximately £3000. Any contribution no matter how small will help towards this goal and sharing my fundraiser will be greatly appreciated. Thank you for your kindness and support.