Hello, and a question


I joined a month or so back, so about time to say "Hi"



mr green

Now then, I have a question. I retired 20 plus years ago due to spinal disease. Since then I have been living on a part-pension, and Incapacity benefit (or whatever they call it now) Plus DLA.

Every time I report some deterioration in my condition, ATOS/DWB have taken it as a reason either to cancel all my benefits, or to insist on a Fresh Claim, which they then refuse.

Three times they have tried. Three appeals. I'm still on my Benefits! I won, hands down, every time.

Now, some four or so weeks ago, a Neurologist Consultant told me I had Parkinson's. As well as degenerative spinal disease.

Ha, now isn't life juts a bowl of crackers!

Anyhow, here's my question. Do I tell the dear old DW&B about the Parkinson's like a good boy should, or do I just ignore it all? After all the original condition that my claim is based on still stands, I just happen to have PD on top, that's all. So .... ??

Sleeping dogs, and all that, maybe? Or Not?

Did I remember to say HI?





Best to keep stummmm! cool

Oh.......and hi from me big grin

Hi MB420,

I would definitely recommend you call and speak to one of the benefits advisers on our helpline 0808 800 0303 about this.

Best wishes,
Digital Team

Are you on benefits Alethea? I just love 'expert' advice! razz

Hi PokerMid,

I am not on any benefits, and am not an expert. But we do have people on our helpline who are!

Digital Team

Hi Alethea

So, what exactly is your remit if you aren't one of these 'experts'?

Why doesn't one of these 'experts' answer these questions instead of you?

Surely it would save on vital resources.........like costly phone calls and time etc?



Skepticism Team 


Hi PokerMid,

My role is to help make sure all the social channels where people with Parkinson's connect run smoothly. 

Part of this is pointing people to the services we offer, where they can get help and information.

Benefits is an area where to advise you properly, we need to have a full picture of your situation. This might mean that we need you to share confidential and sensitive information. So, to offer the best advice we can, our benefits advisers ask that people contact them by phone or email.

This may take a bit more resource but in the end, it delivers better results for you. And after all, that's what our resources are for.

Best wishes,
Digital Team


My thanks to you both. I know what you mean PokerMid, but playing by the book is just part of my nature. So I will call the Experts and seek their help. Thank you Alethia, for your posts, and for the number. Good call ;)

I have to laugh, I have just been diagnosed as having an irreparably damaged nerve in my elbow, its causing my right hand to waste and wither by degrees.

Ageing ~ not for the faint of heart.


Ageing is all part of the journey MB....we are all born to die!

Its how we deal with the middle bit that matters eh? 


hi mb240

what rates of dla are you on ! Mobilty high,middle,low. Care high,middle ,low .

Hi Gus

I'm on Lower rate Care, Higher rate Mobility...

I'll be ringing the experts here sometime this week.

they should up your care component I would have thought get your local pd support worker to help
click on support for you top page to find pdsw

Thanks, Gus.

Can anyone advise how best to get assistance in filling in PIP and ESA application Questionaires They are horrendously difficult and offputting

Hi Spider

When i applied for esa i went too my local disability advice service and they went through the form with me and filled it in for me as i not only find writing very difficult they could also word it better than i could.

you can find your nearest here http://www.scope.org.uk/support/disabled-people/dial/about

Or contact your local PD support worker http://www.parkinsons.org.uk/content/information-and-support-workers

yeah i had my local pd support worker they also know what to say &fill it out for you as what seaa angler said

click on support for you top page ,then fill out your post code !

Well here I am 3 years down the line and guess what? Yup, you guessed it! Got my new PIP claim form to fill in. What really puzzles is that I reach Retirement Age in three months, so I feel this is a waste of time and effort. But I will fill it in and claim. One big problem: Just moved 300 miles southward, and my records are somewhere in the digital ether. I joined my new GP service as soon as I landed here, but they are still waiting for my records. Meanwhile my new Neuro appointment is in December of this year. So I feel somehwat at a loss. I am hoping the helpline earlier is still functional? Maybe someone on the Admin team, can confirm?

Feeling well stressed out by this new form, its got a rather hostile tone to it. Are we the equivalent of Windrush people, always having to produce wadges of paperwork to prove we are what we are. Two incurable degenerative diseases… why do we have to constantly fill massive forms out? Dammit, I can’t even write so have to ask my daughter/carer to fill it in. But that makes me feel sort of exposed, as I haven’t told her the half of my symptoms. I’ve always fought my own battles, and feel really vulnerable now. Dammit, I don’t want to start weeping in front of her! These damned forms, is there no privacy left to us? Are we under some kind of microspcope.

Really hoping the Experts can help me, because I feel like I might run out of strength. And hope.