Diagnosed Yeesterday


#1

A neurologist told me yesterday “I think you have ‘mild Parkinson’s disease’”. Treatment starts next week.

I am wondering if it is worth applying for PIP.

I am not driving much these days but I suppose I will have to advise the DVLA and my insurance company very soon.


#2

Hi Justthisguy,

So sorry to hear about your diagnosis. It’s a lot to come to terms with, and it may help you to take a look at our website, where you can find lots of info and advice for the newly diagnosed: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

We also have a ‘Work, money, driving and legal’ section, with lots of useful information on those key areas: https://www.parkinsons.org.uk/information-and-support/work-money-driving-and-legal.

You can also call our Helpline free of charge on 0808 800 0303. They’re open Monday-Friday from 9am-7pm, and Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Owen,
Moderation team


#3

I tried contacting DVLA online but I do not have a photo ID. The option to print a form does not suit as I do not have a printer. I will phone them tomorrow. Thanks


#4

I was sorry to hear that you have been diagnosed with mild PD. Re driving I was told to inform the DVLA straight away that I had a diagnosis of Parkinson’s Disease and to inform my insurers. My consultant said I was ok to drive. The DVLA sent out a form for me to fill in re my symptoms and contact details of my consultant etc. They asked for me to send my license back and I now have a medical driving license that is to be reassessed every three years. I informed my insurers and there was no problem keeping them informed. At no stage could I not drive. I haven’t claimed for PIP so can’t help you there. Hope you get it sorted.


#5

I got diagnosed in January,the neurologist to me to contact the dvla asap,send a photo in to them with the form they send you,I did it that way because like you I didn’t have a photo I’d either,I too applied for pip,and got the full rate,bye.


#6

Thanks to everyone who responded.

I saw a neurologist on Thursday. The NHS waiting list was to see a neurologist (Gareth) was 6 months so I went private. It wasn’t cheap but I needed a diagnosis.

Gareth seemed very nice and he advised me that my condition could be controlled. He said he would send a letter to my GP and that I should phone my GP on Monday to check if there was a prescription ready.

I phoned my GP Monday morning and they had not heard from Gareth. I phoned Gareth’s secretary at 11:45 but could only leave a message on her answering machine as she had the day off.

I phoned my GP Monday afternoon and they had not heard from Gareth.

I phoned Gareth’s secretary this morning (Tuesday) and she said “There’s no rush for you to start treatment. When Gareth has written the letter I will type it out and phone you and perhaps I could drop a copy off.”


#8

Sorry if that sounds like a rant - I was just wondering if anyone had similar experience


#9

Update:
The neurologist’s secretary phoned this morning to advise that she has posted a copy of the letter but I could call to collect a copy. So I drove round to Cyncoed Consulting and picked up a copy of the letter and drove to my GP. I handed it to the receptionist and said “This is a copy of a letter which has been posted to you but I brought it straight round as it recommends treatment.”

She said “It will take 48 hours.”

I smiled and said “I’ll be in touch.”

She said a couple of times “it will be ready after two Friday.”


#10

Sorry if anyone is fed up of all these updates (or if I should be posting them somewhere else) but I chases up my prescription and I am on my new medication but a bit shocked at the possible side effects of Selegiline –besides having to go teetotal


#11

Hi Justthisguy, Glad you got sorted eventually, wherever you go things never seem to be ‘urgent’ to anyone else but you, and coming to terms with being diagnosed with Parkinsons things don’t work over night. I can’t comment on the meds you have been prescribed, I’m on different meds. Hope you get on with them, if not get back to the or Parkinsons nurse if you have been signed up to one, don’t suffer in silence.

Take care and welcome to the forum - sheffy


#12

Thanks. Very best wishes


#13

Been took for a ride by a conman ,don’t trust anybody,who charges the earth,he’s only thinking of your bank balance,chase him up and get your money back,it’s a lot cheaper to wait your turn for a PD nurse.bye.


#14

Hi @Wag,

It’s great to see you showing some moral support. You may have misread the thread as it appears that Justthisguy’s prescription situation has been resolved. However, it sounds like you may have had a bad experience with a private doctor which is unfortunate.

If you’d like to speak to someone about this or get advice on how to avoid a situation with a GP where you may be disappointment with their service, please speak to one of our advisers via our helpline on 0808 800 0303. If you haven’t done so already, you may also find it helpful to speak to a local adviser so that you are getting as much support as possible, you can find your local one here - https://www.parkinsons.org.uk/information-and-support/helpline-and-local-advisers

We’re here to support you so please let me know if you find this information helpful.

Best wishes,
Reah


#15

Hello,reach,yesterday the Parkinson’s nurse phoned me to say that the Pramipexole can now be stopped and start on the co beneldopar,which zi’vr done,and last night I had the best night’s sleep ever since I was diagnosed last January,then today she phoned me to find out what I was like last night,she seemed very pleased,!and also she’s got me an appointment to see the PD doctor on 12,02,as regards to the good night’s sleep I also bought one of those Revit I’ve circulation boosters and that worked but up to yet I’m not counting my chicken,I’ll let you know in a fortnight’s time to let you know how things are then,after the tablets have kicked in again,bye.


#16

Hi @Wag,

It’s amazing what a good night’s sleep can do! :blush:

I’m glad you were able to speak to a Parkinson’s nurse and have already seen some improvements in your health since you’ve been prescribed your medication. Do take care.

Best wishes,
Reah


#17

Hello again ,thank you,bye.


#18

Hello reah,I said I’d let you know how I went on at my consultant s appointment,I asked him how he came to the conclusion about me having Parkinson’s Disease,and my wife wascthere too,he asked how long I’d had PD and I said you should know your the expert,and then I went on about not being able to sleep since he put me on Madoparthen I asked him if I’d been wrongly diagnosed ,he looked puzzled when I told him how bad the Madopar had made me,he said I look really well ,so my wife asked him if I could come off of the of medications,he said I can come off of them for 3 months to see if I get the tremors back,and he’ll see me again in 3 months time,what he said sounds promising slightly as he hinted that I may not have PD after all if I’m ok without meds for 3 months,I know it’s not time to rejoice yet but hopefully I can get some sleep now and feel better once I’ve weaned off Madopar,let’s hope I don’t have PD,what do you wrecking?bye for now,I’ll let you know how I got on in 3 month’s time bye.


#19

Hi Wag,

Thanks for the update, I agree this does sound promising but I guess we’ll know for sure in 3 months time. In there’s anything we can support you on in the interim, please let me know.

Best wishes,
Reah


#20

Will do ,bye.