Mandy de la Mare

Mandy de la Mare, new Thalidomide Society trustee

My name is Mandy de la Mare and this is a picture of me in my new front garden amidst a pile of rubble, old carpets and other parts of my new home now being majorly overhauled.

I have recently joined the board of trustees for the Thalidomide Society. I have been a member of the Thalidomide Society since I was a young child as my mum and dad were heavily involved with the Society.

The main reason I joined the Board of Trustees is that I feel I have a lot to offer Society members in various different areas through my own life experiences.

I have three children who have all been to Thalidomide Society meetings at various times over the years, my two eldest have also attended meetings when they were older. My two older children are now grown up and have homes and families of their own. My youngest daughter still lives with me at home.

My youngest daughter has issues of her own having been diagnosed as being on the autistic spectrum, she also suffers with mental health issues like so many teenagers today. She has been lucky enough to get into a special school that teaches people like herself and is now finally getting on really well. Unfortunately, for various reasons, she only started full-time at the school in January this year and then of course the coronavirus hit.

Due to my daughter’s mental health issues and being autistic she has found lockdown really hard, not being able to meet up with friends and going out when she likes. It is getting a bit better now as lockdown eases up because she can once again meet with friends outside. She has also just gone back to school for two days a week but we are hoping in September that she will go back full-time and be able to complete her GCSE studies.

We have just moved into a new house on the outskirts of Bristol in a small village called Tockington which is lovely. However, we are of course having to start all over again doing all my adaptations to the house which is proving challenging.

The first project that we are taking on is to recreate my ensuite bathroom that I had at my old house. This earlier design was absolutely amazing and meant I was able to be completely independent in the bathroom. I can’t wait for my new bathroom to be up and running.

To recreate this en-suite bathroom we have stolen bedroom four and turned this into my new bathroom, luckily for me my partner has managed to work out a way in doing it. We have created a sort of bridge type thing passing over the main staircase to join up my bedroom to the new en-suite bathroom. There is a large feature window on this new walkway that used to be over the stairs, this will obviously be changed to obscure glass so that nobody can see me walking through from the bedroom to the bathroom in a state of undress!

Also, we have an old barn as part of the property which has been partially converted into living accommodation by the previous owners. The bigger plan is to turn this barn into a living area for my daughter so that she can be as independent as she wants to be and if she ever leaves home it could be used in the future to have a live in PA if I should need one.

The new house has lots of possibilities, it just needs a lot of tender loving care. It has only ever had one previous owner from when it was built in the 60s, this lady is now sadly in an old people’s home suffering with dementia.

I am also a volunteer for the Thalidomide Trust which I have been doing for over 15 years. I was first brought on to help develop speech recognition software which I use all the time, I’m using it now to write this blog. We did try to develop a program to work alongside Dragon professional which made it easier to use but it had lots of problems so we gave up on that one. Those beneficiaries who do use speech recognition use Dragon professional which, in my opinion, is the best speech recognition software on the market.

I have used speech recognition software to work my computer now for 14 years and at the beginning it was not that good. It has come on leaps and bounds and is now much improved with an accuracy of nearly 100%.

Because I am blind I also have to use a special piece of software called J-say which allows me to use speech recognition with Jaws, my screen reader software.

I have also helped beneficiaries with the Direct Payment Service best known as (DPS) as I have been a user of this service for 16 years and now manage a team of PAs to help with my care.

I look forward to working on the board of trustees and hopefully representing the views of the Thalidomide Society members and hopefully we will be able to hold our AGM next year where we’ll all be able to meet and catch up. I always find these meetings very enjoyable, a weekend catching up with old friends from different corners of Britain and further afield!