Hi Keith,

I’m really sorry that you feel this way- I truly sympathise with you.

We know the system isn’t working for people with the condition so we’re active in raising issues about how the DWP and assessment companies could improve it. We have Parkinson’s local advisers who can support people with the condition to access the benefits they’re entitled to.

I’m happy to point you in the direction of our local advisers so please let me know if you’d like me to do this.

Best wishes,


Hi Reah
I would be grateful for any additional help I can get. I’m just so fed up with answering the same questions twice or even 3 times
I have never claimed any benefits ever and I don’t have a clue what to claim or how and where to go
I filled out the pips and sent it off then a week later they sent me more forms to complete . Most of which I had already answered on the first forms
Then I done ESA over the phone
Then they sent me another form to complete again answering the same questions . When I phoned they said it will be at least 3 weeks before I hear anything

So please can you point me in the right direction or the right people

Thank you


Hi Keith,

You’re completely within your right to feel fed up. It’s awful that you have to go through this.

We have a great search tool on our website which allows you to search for a local adviser near you. You can find this here - https://www.parkinsons.org.uk/information-and-support/helpline-and-local-advisers

Or contact our helpline 0808 800 0303 to be put in touch with someone near you.

Hope this helps.

Best wishes,


We’re all just ordinary people who have been given an extraordinary burden to carry.
This really wasn’t supposed to happen.
I moved my family to Spain for a change of lifestyle. Well I got that for sure!
It’s not fair, but in my experience life is seldom fair.
I’m glad I packed a lot into my life when I was young. I’m glad I played hard and burned the candle at both ends. In the middle at times as well.
I’m still going to try to have fun, help those worse off than myself and love my family unconditionally.
I’m afraid that the strong, dauntless leader who was ready for anything and would take on anybody is fading away.
Toss a coin and it will have landed long before I’ve decided heads or tails.
Accepting this crap is tough, but I’m not dead yet and there’s still more fun to be had if I can only shed my skin and evolve.
I have no choice but to let the old me go.
Others clinging on to the old me make it harder.
Have a cool weekend!


Hi Hubby
Truer words were never written
Although i have a few bad days i wont give in
My family know i cant do alot of what i used to and im not pushed
Ive tried and failed and sometimes failed EPICALLY and i have the marks , cuts and bruises to prove it
No doult i will try and fail again in the near future
But its only in my failures will i know what i can and can not do
I have worked hard and played hard but now i accept it for what it is , although im not happy about it
No one is as lucky as they think
This condition can hit anyone at any time
Ive learned alot about myself , ive learned my strengths and weaknesses
But it still makes me NO better or NO diffrent than anyone else
I learned who my true friends are and since this condition effected me and i found this forum i have made many more friends than i lost and that is the only blessing this condition has given me and in time i intend to meet many of them like i have with ROY-S and T1 TOMMY, , While i can drive and get out there are many more i want to meet , no natter where they live
Im not going to waste any time , my wife Kay thinks its a good thing to meet others as although she is supportive and there for me she still doest really understand and she admits to this
But with this condition


Thanks for the mention BRUV
I feel the same as you and Hubby
I’m already a winner even though I’ve got a whole bunch of stuff going wrong
Because of the FRIENDS I’ve met on here like yourself, and my guru Peter and Mam and of course Babswood my wee Scottish cronie.
I know I’ve slipped into the black hole now and then and again now but there’s always someone on here with long arms to pull me back from the brink .
And unlike other so called friends and family .
They can be relied on.
Tommy :pill::pill::pill:


Hi Tommy
Its beyond friendship , beyond family
Those poxy bkackholes appear out of nowhere and no reason
But i will always pull you back
You never have to ask
I KNOW you would do exactly the same


You better believe it BRUV


If theres only one thing i can be sure of


Nobody understands like you guys.
You help keep me sane…
Well almost.


I’ve been saying all along 'why oh why do we have to fight for everything we get? Nothing is straight forward any more, and even life is a battle we have to fight to survive. But we do and sometimes we come out the other side unscathed, to stay focused and strong guys!

Sending my thoughts to you, keep your head held high - sheffy xx


Hi H
If i only keep you half sane i will have to do better
The only problem with that is im trying to work out what sane is , so if you want explore that journey with me you bring the rolls i’ll bring the flask of tea
I remember what normal is and working my way to some sort of it like the rest of us
But being able to say what i think and know i will be understood is almost a cure and knowing im not alone
I wish ALL your tomorrows be better than the day before



Hi Sheffy
Its not the fight i mind , its the critisisum and endless useless and repeated questions they ask
Sometimes i dont think they believe the doctors
But i live to fight another day
I think im at Round 50 now but had so many ive lost count
As with keeping my head up i do , but only to get my face slapped lol

Keep us happy sheffy ( and on our toes )


Hi guys my sister in law is taking my brother’s ashes to Glasgow on Monday and he will be interred with my mum and dad on Wednesday he did say when he was very ill and in pain that he wanted his parents so I suppose mentally that makes me feel better although I have virtually no belief in these matters after a debate over the phone with a priest in the 90s but that’s a whole other story .
I would’ve liked to travel with them but unfortunately I have an appointment with my neurologist on Thursday and think it would be bad to leave my wife for that length of time.
Also neurology appointments are few and far between.
Who knows maybe it’s for the best for me not to go all things considered including my mental health at the moment but it still leaves me with a slight feeling of guilt not to see it all through to it’s final conclusion after the journey my sister in law and I have been through over the last two years.
I can only hope that it brings her some sort of comfort as she has been an absolute heroine especially in the final months there’s nothing I could possibly do to make up for that as thank you just doesn’t do it justice.
I can but hope she makes the most of the rest of her life and remains healthy also receives the happiness and contentment she surely deserves.
Thanks for reading this TOMMY :pill::pill::pill:



Takes a proud man to say what you did
How you feel is private
But as a friend I RESPECT YOU
Your brother is now being taken care of
So now it’s up to you to take care of Sue and yourself
Our condition doesn’t make it easy infact it’s harder
but I stand side by side with you
We are not real brothers but I consider you to be mine
Be proud of what you did . Don’t hold on to regrets for things you can not control
I wish peace and happiness for your sister in law , you have a very special bond

London Bruv


Hi Tommy I think Keith has already covered all I would have said hold your head high you have done your brother proud as Keith said you can now look after your wife and yourself I and mam are both proud to call you a good and true friend take care
Pete and mam


Take care of yourself Tommy.
My thoughts are with you.


Thanks Hubby
You too I saw on the forum that you are struggling (a little)
Tommy :pill::pill:


HI Tommy sorry to read that you are struggling.
I do hope your neurologist gives you answers.

I am thinking of you ma cronie.

Take Care Babs x x x


Hi Babswood
I’m much better now your back
( Don’t be sick HA HA)
You’ll be the first to know how I get on I think I’ve said this before but knowing you you’ll know before me LOL
Good to hear from you Tommy :pill::pill::pill: