Myrtle Ellis was a self-taught social historian whose interest for English silver became her life’s passion. Initially attending a course at the Hampstead Garden Suburb Institute, Myrtle went on to give the course and soon became a Panel Lecturer at the Victoria & Albert Museum, as well as for the English Speaking Union. She started researching the silver collections of historic houses and her lectures on them piqued her students’ interest to want to visit and, and with the help of our father, Stanley, built up a business of “special interest tours” taking other groups to houses & museums either at times that they weren’t usually open to the public or that simply didn’t open to the public. Myrtle’s reputation grew and, in 1985, the Central Office of Information approached her to write about the jewellery Her Majesty the Queen would be taking to the Caribbean, and this led to her being the only person authorised to lecture on the Queen’s Jewellery. Around the same time, Myrtle set up the Silver Study Group, arranging monthly lectures and visits for the members who also had an informal arrangement to meet every Saturday morning at a café in Portobello Road.

 

Myrtle was diagnosed with Posterior Cortical Atrophy (PCA) relatively late (she was 68) although, in retrospect, there's a good chance she was unwell earlier than this but didn't let on. Since PCA initially attacks the visual cortex, Myrtle started to see upside down and her brain was increasingly unable to process the image her eyes were seeing. This meant that Myrtle was a researcher who could not read, a lecturer who did not recognise her own slides and a published author who could not write. As the disease progressed, Myrtle found simple words eluded her; she lost her fine motor skills then her gross motor skills; she could not recognise faces, even those of her family. And the cruelty of the disease meant that she knew what was happening to her. Whilst Stanley initially cared for Myrtle, eventually the more traditional Alzheimer’s symptoms appeared and Myrtle is now unable to do anything for herself, so has 2 wonderful full-time carers who look after her at home. 

 

As a result of her being referred to the National Hospital's Dementia Research Centre for a drug trial, I wanted to raise some money as a “thank you” so, in September 2006, I took part in a 5km fun run. To everyone’s greatest surprise and obvious delight, I raised £9,500 that we felt was too much to simply add into the general pot so, with the agreement of the Chief Executive of The National Brain Appeal, we created the Myrtle Ellis Fund (MEF) under their auspices to provide support, information and advice to individuals with rare forms of dementia and their carers.

 

A diagnosis of any kind of cognitive impairment brings concerns and questions for those with the disease, their families and friends. When it affects younger people and when the form of dementia is rare, then the problems that may be faced can be complex. The PCA Support Group is run through the National Hospital for Neurology and Neurosurgery which holds several meetings a year. A newsletter is published and circulated to members between meetings and the group offers the opportunity for contact with other people who have experienced a diagnosis of Posterior Cortical Atrophy. In addition to PCA, the MEF has started supporting similar groups for other rare dementias such as Primary Progressive Aphasia (PPA) and Familial Alzheimer’s Disease (FAD).

 

With my 50th birthday looming, the best present you could give me is to make a donation to the National Brain Appeal for the Myrtle Ellis Fund - please be generous!

Thank you,

Susie xx

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