Just sit and wait?


I was diagnosed early march 2016, and i was told that i was to be introduced to specialist nurses and Parkinson's UK, so i waited i got fed up of waiting so i got on the Internet and  found this site,at the moment i am just trying to find my way around. I have our ready found some interesting information about DVLA and driving.

Good by for now


Hi itsrabbit

   Hello and welcome , you have probably learnt your first important lesson in that with Parkinsons you have to be pro active in your treatment finding things out for yourself and deciding what works for you and what dose not , this is a good place with good people and you will always find help and advice when you need it.

  Live well. Cc

Hello Cc

Thank you for your welcome message, It's not only parkinsons you have to find out a lot of things for your selfi have had/got other things wrong with me with some lots of info was their and help with another no info a tall but with parkinsons nobody tells you about it you got to look for your self, It is a good job we have the Interneti hope to get info from here and other places that may help me and if it's like the other stuff i found out about my other illness i hope will be in a position that i can pass it on to others.

Best wishes itsrabbit  

Hi itsrabbit,

Welcome to the forum! It's good to hear that you've found us now and feel better connecting with other members. We hope you find it useful. If you need more information you can find local groups, support in your area and useful publications here: http://www.parkinsons.org.uk/content/support-you

Also, If you would like to talk to our advisers please do feel free to call the Helpline on 0808 800 0303 from Monday-Friday: 9am-7pm and on Saturday: 10am-2pm. Hope this helps.

Best wishes,


Moderation Team

Hi Edwina

Thank you for your post, and i have been in contact with my local group, I have received a email from them with lot of useful information

Best wishes itsrabbit

I was told I had PD on April 20 2016 and I havent heard from anyone yet,,,,,,, not even my doctor, is that normal ?

Hi Pog

I do not know whether that is normal our not, It's is similar to what happened to me, the only difference was i had seen/talked to my doctor about the medication i have been given, So like yourself I found this site and looked around a little bit and then rang them had a talk and was given the telephone number to ring to have a chat with the local adviser for the area i am in, But in the men time i looked about this site a bit more and found a local branch and rang them and had a very good chat, They are so helpful and made me fell better and realise there are people and places that can help you,

So when i got fed up with just sitting and waiting i looked on the Internet and found this site and then rang them and talked and I have taken some control of my life back so


Best wishes itsrabbit

Hi Pog, 

Have you been in touch with your doctor since April 20? There is certainly nothing wrong with you contacting them to ask for an update. 

If you would like to talk to a Parkinson's nurse or one of our advisers then please call our helpline on 0808 800 0303 from Monday-Friday: 9am-7pm and on Saturday: 10am-2pm. 


Ok Thank You, I'll ring them. x

Hi rabbit 

the best help I've had came from PD advisor and PD nurse as for neuro dr well they are months away at a time it gets really frustrating if your not coping to well . And that's the story with the nhs .. Good luck your not alone !!!


I would love to retire, but I don't know what benefits  I could claim, I drive HGV's and Buses for the music industry, I hate driving all over Europe, its just too much for me now. Anybody got any ideas????

                             Hello Pog


PIP and ESA aren't means tested, phone 

Parkinsons uk speak to them and find your local support worker you can also type PIP and ESA in the search box on the top rhs of this page for loads of advice.But whatever you do dont send in PIP and ESA forms in without your support workers help.

                            Good luck, Billy



Aye aye Billy 

What's esa ?

Hi Pog,

Your job sounds like a full-on and tiring one. I understand you feel it's too much for you now.

Please have a look here to read more about benefits and grants for people with Parkinson's: http://bit.ly/2avlQr1

You can also speak to our benefits and employment adviser on 808 800 0303 for more information. Please note though that we can't provide financial advice.

All the best,

Ilona (Moderation Team). 


Hiya Ian ESA, Employment Support Allowance can be claimed alongside PIP I think its based on your National insurance contibutions, checkout GOV website for more info

                                   All the best Billy

Strange today, I'm swaying all over the place, I feel like I'm fighting my way through cotton wool and my nose is twitching. Anyone got any ideas?

Hi Pog,

Are you feeling any better today? I hope so!

Don't forget you can speak to a nurse on our Helpline on 0808 800 0303.

Take care,




I got PIP today, £55.10 a week. Hurray......



Hey Pog - Congrats are in order!!


PIP of £55.10 per week works out at approx, 67 pints of john smiths in my local pub. ha ha ha.......