So I finally got a decision about my application for disability benefit – they\’ve entitled me to the low level of one half of the benefit, which means I am now officially entitled to £71 a month (I\’m assuming adjusted for inflation over time) for the entirety of my life.  This is an unbelievable help, and definitely makes all that time spent filling out the 60-page application form worth it…but I wasn\’t fully satisfied with their decision and wound up having to write them this letter today: [br][br]I am writing with regards to your decision that I am not entitled to the mobility component of the Disability Living Allowance, on the grounds that I have ‘no significant problems getting around outdoors’ and I ‘do not need guidance or supervision when walking outside on unfamiliar routes’. You also state that my only mobility problems are due to anxiety and panic attacks.[br][br]I was surprised at this, as it doesn’t reflect what I wrote in the rather lengthy application form, and it certainly does not reflect my daily life.[br][br]It’s true that I can manage to walk around on my own, because I have the use of both my legs, yes. But having Tourette Syndrome is a very serious problem, particularly because it causes my eyes to strain very far to the left or right, and to blink incredibly hard and for prolonged periods of time until it feels the tic has been completed. It’s a frustrating condition because most people tell me they don’t notice any of my 30+ tics, so I feel I’m silently suffering.[br][br]This eye straining/blinking means I often can’t see where I’m going because my pupils are covered either by eyelid or eye socket. A recent example was last week when my partner was picking me up from a shopping centre and I had to meet him in a car park. My eye tics were so bad, I didn’t notice he was there until I was a few feet away from him, despite the fact that he says he had been jumping up and down and waving his arms about to get my attention, and he was the only person outside of their car in this little car park at the time. I just couldn’t see him at all. [br][br]I have this same problem with traffic – I can’t see the cars coming at me, so I have to entirely rely on my sense of sound much of the time.[br][br]This problem is especially bad when in busy crowds of people, because all the activity rushing past me makes my eyes dart even more than usual, so that I’m regularly stumbling into people or falling when walking in busy places. [br][br]I also have to take extreme caution on stairs and escalators because the motion again makes my eyes strain all over the place, and I have had multiple experiences of stumbling on stairs and escalators and catching myself just in time – I know if I’m not very, very careful or if I don’t take a lift, I run the very real risk of falling and injuring myself.[br][br]Furthermore, in terms of following directions, I have some kind of mental block that means I just can’t understand directions unless they’re drawn for me in a very clear, concrete map that I can hold with me and check at all times. I get lost every time I try to go anywhere new and I always have to make multiple calls to someone to have them talk me through the journey. It used to drive my partner crazy before we lived together because even after visiting his flat for a year, I still had to call him to ask how to get there. [br][br]This means I just don’t go anywhere new on my own, and I also prefer not to go anywhere busy on my own because I am at risk of hurting myself, accidentally walking into traffic or getting horribly lost and confused. It also means I am unable to ride a bicycle or drive a car for the entire duration of my life, and I am completely reliant on either public transport or someone else driving me, any time I want to go somewhere. I could never go on a holiday on my own, for instance; and, if there were some kind of emergency where my partner was unable to pick up our son from his childminder, I would be unable to get him myself because I can’t drive to the house.[br][br]Quite honestly, I was surprised to see your decision on my case, as I had been thinking this whole time that my eye tics were the most likely aspect of my disability to qualify me for benefit, because they cause me so much danger and trouble. [br][br]Also, I may not need assistance getting to bed/sleep at night, but my tics mean that I don’t get more than about six hours of sleep a night because I just can’t stop moving – and the only reason I don’t need assistance with this is because there is nothing anyone can do to help. I’ve tried medications, I’ve tried diets, exercise, vitamin regimes, nothing works, there is no cure, there’s not even any kind of proper treatment for my problems, nothing that actually works, and my problems are getting worse each year. My tics are morphing from simple spasms into complex motions that often leave me frozen for moments at a time and affect my speech and sight above all else. The nature of Tourette’s is that it ‘waxes and wanes’ so that sometimes it’s not so bad, but other times it’s so awful I feel honestly crippled by the problem, and there’s nothing I can do to either control or predict this.[br][br]I’ve also read information that, due to hormone changes in menopause and the way this affects dopamine levels, when I’m middle-aged some day all my problems are going to be even worse. There really is no hope of recovering.[br][br]Yours faithfully[br][br]Vrinda Barker[br][br]I just hope something comes of this letter.  I really do believe I\’m entitled to more.  Plus, if I can get entitlement to the mobility component, I might be eligible for a discounted railcard as well.  And also…I guess a large part of it is about having my problems recognised, since I never feel they are, that they\’re understood or taken seriously enough.


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