I've finally got round to joining the forum five years after being told I had Parkinson's.
My way of dealing with the diagnosis was to just carry on as normal so time has gone by and it's all been a bit of a blur really - only after stopping work six months ago did I feel the fog was clearing a little, and I've had more time to ponder my situation.
I have often looked at the forum and found it reassuring that there is always someone with a problem/issue similar to my own, so I hope I will now be able to share some of my experiences.
I worked as a local newspaper journalist for more than 30 years both as a freelance and on staff, and was able to carry on after diagnosis but, despite support from my employer, I could feel my output steadily declining.
I am now going through the process of claiming ESA which I find quite stressful. I have just been sent a face-to-face interview date for mid-August. Does anyone have any tips on what to say and what not to say?
I can't help feeling that people still look down on you when you say you're on benefits. But hey, I've paid NI for nearly 40 years and carried on working for as long as I possibly could. Why would I choose to be on benefits when at work I could earn more in a week than I get in a month on ESA?
My 'therapy' is playing lots of tennis, dog walking and yoga, which is working well, but I couldn't see myself going back to a 9-5 job again.
I'm 58 and married with three grown up children, all still living at home at the moment which I love.
Tips.. Treat everything Honestly as if it is your worst day and answer everything in the context of your worst day, they are not interested in what you cannot do, but what you can do, if you was to say about dog walking, yoga and tennis I'm afraid that is good enough reason for them to say you are capable of work it doesn't mean capable of your old Job/career or any job, just you are capable.
they'll happily give you a score of zero points and fail you leaving you with no benefits and no income, that might not be a true reflection or reality of how parkinsons effects you only a daily basis but we are just a statistic and they get paid by the Government to implement that by fair means or foul,mostly foul, the assessment doesn't start at an atos centre it started the moment you applied for ESA.
How you arrive there for the assessment, how you respond to the assessor who greets you, how you walk to the assessment room, how long it takes, the distance is measured, how you sit, hold you self sitting, in pain? or not?, fatigue?, questions they ask, and how your respond, All make up and are part of the form, till the point you leave the building, and yes you press a button to leave that is one of the Questions... can you press a 'button'?. It is all Loaded against the claimant.
Thanks for the tips sea angler. I plan to make notes to take with me so hopefully I won't forget anything.
Yes, it seems they'll do anything to try and trip you up in what you say or do. I have felt a lot better since falling off the work treadmill but I know that going back to that environment would be bad for me. If I was an employer I would not want to take on someone like me because fluctuating symptoms would make my work inconsistent and unreliable.
I went for an interview at the local college for a job as a learning support assistant but afterwards was told they thought I wouldn't cope because they needed people who were strong and physically fit.
I then began to realise my symptoms were probably worse than I wanted to admit.
Aye aye jay jay
Christ that's gonna come to me some day no looking forward to that , you've worked all your days hold your head up as I for one don't mind paying taxes for you and always remember we didn't ask to get PD . Good luck lassie
I finally got round to the forum after two years since diagnosis, and browsing I spotted your post. You may have had your interview already, but just in case:-
My grandson, aged 16, lost his renewal of mobility allowance because an interviewer didn't understand his condition and didn't read the reports on him. (He has an extremely serious heart condition, next phase - heart transplant) We got it sorted immediately but probably only because we are articulate, confident, and I am very good at writing letters! What we learned:-
I endorse everything that sea angler wrote to you. Give only examples of you at your worst, not on a good day. Do not talk about all those activities you do to stay well. Do not walk in with a brave face, looking your best, in fact do the opposite of what you probably do when you see friends. It really goes against the grain, when most of us try to show our most positive front in public, but it's the way to do it.. Mention everything that causes a struggle, however minor and don't play it down. You may feel uncomfortable but you are not a fraud. They will look for anything that supports them refusing a claim, that's their remit. Take any supporting evidence and make sure it gets discussed.
Very best wishes, B
Aye aye jay jay
how are you getting on these days ? ( health pip life ) keep us posted
good luck Ian xx
Hi Shaken, not stirred
Many thanks for your comments, all very good advice. I had my interview yesterday and, yes it felt very unnatural going in there looking glum rather than making an effort to be cheerful. I had worried about it for days, thinking I'd say something I'd regret. By the time I got to the assessment centre I was really nervous which was probably a good thing as it made my symptoms worse.
But there is good news. The doctor started going through my form, asking additional questions and taking notes. Then, after only 10 minutes said she'd heard enough and would be strongly recommending approving my application (presumably to the support group - I was too shocked and surprised to confirm this with her) and explaining that her opinion had a strong influence even though the final decision wasn't hers.
It seemed to me and my husband, who was with me, that common sense prevailed. Obviously I won't totally believe it until I get the letter confirming what she said. I'll let you know.
When I got home I googled what had happened and found one of two other people who'd had a similar experience to me. It seems to be luck of the draw who you get carrying out the assessment which is very unfair.
I'm so glad you sorted out your grandson's problem but you're right, people who don't understand the system and cannot fight their cause would probably have had a different outcome.
Thanks for your good wishes. Hope you're keeping well.
i was fortunate that my first ESA experience that i had someone help me fill out the forms, not only because i couldn't write and my mental state i couldn't think but that the person helping me could translate how i was to the form to answer the Questions, many without help of how to navigate these forms Fail and there are far too many people getting zero points.
I was also fortunate that the fellow carrying out the assessment told me his brother had lived and died with Parkinsons, and his observation of me at the asssessment he backed me 100% in his words,but i was still wary that it might Not of been the case.
Going through PiP was very stressfull added to that i was re assessed for ESA at the same time, i was awarded PiP first both at enhanced, and ESA was paper based result a month or more later, Sense prevailed but I'm wondering how do people score zero points with Parkinsons? it effects every aspect of our lives.
Yes, I read about so many people who had scored zero points with Parkinson's. Some were asked if they knew when they would recover - obviously the person interviewing knew very little about the illness.
I found the benefits advisers at Parkinson's UK were very helpful with their suggestions about the form filling and the interview. It's true that if you are unaware of the pitfalls and fill the form in the wrong way you're likely to be told you're capable of work.
That's brilliant news, you must be so relieved! Like most people, in our family we all completely understood why they had to tighten up the system and prevent those who don't deserve help from taking it. But it seems they came from a starting point of 'we want to cut xxx%' and then gave the job to lots of poorly trained individuals who use a tick box exercise that's so rigid, it doesn't allow for reality. It's nice to hear that some of the assessors know what they are doing.
I hope you and your husband celebrate your triumph over adversity in some small way!
Yes, it is a relief. The doctor seemed genuinely empathetic which is encouraging, but I wish it were the same for everyone in our situation. Still a bit in shock so haven't thought of a suitable celebration yet!
I went for my pIp assessment 6 weeks ago and still waiting for reply.Dont know if thats good or bad.It is so
Stressful waiting everyday for postman. I was on Disability allowance for life and then pip came into force.Has anyone else waited this long for reply?
Glad it all worked out for you.
Aye if they asked for your mobile number they will send a txt some time ,doesn't matter how long they take it will be backdated from when you applied
tooralooo Ian xx
@Glasgow Girl - Yeah its been 5 weeks since I had my PIP assessment waiting for the postie everyday got a text about a week after saying they had all the info then a letter stating the same and sorry about the delay.… I didn't think it would take this long maybes they are contacting my PD nurse etc that I put on the form?
Well hopefully we get word soon.Glad to hear someone else waiting like me.
Let me know how you get on.