TV Opportunity for ataxia

[Jonathan_Evans]

Hi everyone, Jonathan from Ataxia UK here...

We have been contacted by a leading TV production agency who are currently recruiting people to talk frankly about their life with ataxia with a view to it being broadcast as part of a landmark documentary series. The show will take a sensitive and honest look at people’s experiences of body-altering conditions, and a first person testimony will tell the story of what it means to live with a physical disability.

It’s a simple premise - sit-down interviews are filmed on a plain background, without the use of voice over, and the finished film is made up of a collection of voices, people who have been given the platform to share their personal story.

Alongside life with ataxia, the producers what to know how you manage living your day-to-day life, how and where you find strength to tackle the challenges, your hopes and dreams… The aim is to increase understanding, raise awareness and inspire hope.

Initially this would just be a confidential chat on the phone, with a view to half a day’s filming in early June – with travel expenses covered. Applicants must be 18 years old and over.

So if you are keen to have your voice heard and are comfortable being filmed, please contact [e-mail] stating your name, phone number and address, alongside a brief paragraph about yourself.

As is the nature of these opportunities, there will be limited places, so please don’t be disappointed if you miss out. Thanks!

[cclive35]

Good idea, please try and get doctors to learn about ataxia, where would we be without John Radcliffe. The hospital is such a help

[Litty]

Great idea and thank you telling us so well. My idea of hell being filmed though!

[sylviagreenhalgh]

yes I am interested in being in this project.I live alone as my partner of 21 years left me as I was too old and disabled. some friends have dropped me because of my condition. Last month I had a spinal tap and now I can feel my feet and hands for the first time in over 4 years. I can still drive short distances, I have been issued with a motorised wheelchair but no ramps so I could not get out of the house but now the ramps have been fitted and they have really changed my life as I can get into the garden now for the first time for 3 years. My condition is progressive and the brain scan shows damage to the cerebellum which will never improve . the condition is exhausting - I wrote health and social care textbooks for many years and was on the boards of several charities but I have had to give that up. I am on attendance allowance which pays for the cabs I have to use. my walking is very limited so if I go out I have to be pushed in a wheelchair but I hope once I am assessed as competent I can go out on my own in the special wheelchair. I was very active before this illness I was a tour guide at RHS Wisley but now I do not get out much. I used to play the violin in a local orchestra ( conducted by my son ) but I had to give that up but the good news is that since the spinal tap I can feel my hands and feet so have played the violin ( badly ) in private. I have 4 children- now adults, one son is in Dubai , another 2 live nearby but I do not like to ask them to do too much for me. My daughter lives in Ealing and has a stressful job so I see her about 3 times a year.obviously I have my moments when I worry about how I will be in the future but on the whole I am grateful for having a life and still being independent . the Invictus games are a great inspiration.People are scared of disability so it is hard- I went to an AGM of a local charity and after the meeting and before lunch there was a fire drill and we were all told to walk to a meeting point which I was unable to do, so they did not know what to do with me - I was quite upset by this as the meeting was in the local council offices so I contacted the officer in charge and they have now revised their procedure so that they will assist disabled people in the future if they have a drill . I have a disabled centre near me where I go for an exercise class but I also go to a mainstream exercise class for older people but I am the only one there who cannot do much but the tutor is very good. I try various things just to see if I can manage them and in the autumn this year I am going on a trip to Lourdes with my carer. I went on a coach trip 3 years ago and was told they could not accommodate me in the future unless I bring a carer- it was not a good experience. 3 years ago I got on a bus outside my house - I was still walking then with difficulty - the bus was packed so I asked a man if I could have his seat and he told me to get off the bus and get the next one- these experiences make you feel you should not try to have a normal life- whatever normal is !I am happy living on my own and on the whole life is good - it is the attitude of others that makes life hard. all the best to everyone Sylviaxx

[Ruan61]

Fab idea not enough people understand what we go through on a daily basis. I would love to share my story.

Ruanda x

[poolboy]

Fantastic! public recognition at last. I am not the sort of person who would want to appear on the programme but I am all for those who want to .

At my local gym the staff there feel as though I am having them on when I try explain exactly what it is that I have. Hopefully people will really understand what it is like.

[bevvick1964]

Yes definitely count me in thanks 😀

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