Diagnosed today


#1

I had to pay privately to get a diagnosis, as did my father 17 years ago, so no change there.  

I have a script for madopar, which I can get my GP to convert to an NHS script tomorrow.  I'm already having physio on the NHS. The Nuffield neuro said the GP should refer me to a Parkinson's nurse. I guess I'll contact the local advisor of Parkinson's UK too.

Anything else I should be thinking about?


#2

My comment above is the third time I've posted on this forum without getting any response.  I can take a hint, so I won't be using the forum again.

Goodbye.


#3

Hi Editha,

Getting replies on this forum can sometimes be, just like people with PD, a little slow. You will see posts going on at all hours of night and day such is the nature of living with PD.

I've looked back at your previous visits to this forum. Your first question posting was "Hi and help" 09/04/2017, that received a healthy number of replies. Your second question posting "Private medicine in Devon" didn't get any replies, that is very unusual. Perhaps nobody had anything to useful to offer?

Back to your current post, you ask "Anything else I should be thinking about?" If you drive you should inform the DVLA and your vehicle insurer of your diagnosis. I seem to recall reading somewhere that one person also had to inform the home insurance provider.

Regards,

Tractorman.


#4

So sorry    people are sometimes slow to reply. I guess most of us have that experience from  time to time.

Sorry also you have to deal with this diagnosis ,shattering in itself. My advice is first, continue to post.

Second don`t despair.

All the best,

Frances


#5

Not every member is one the forum every day, I'm not, just maybe twice a week and some weeks not at all.


#6

 

 

To late, I think Editha has left the building!

It's a shame, as Tractorman says "if you have anything to contribute to a posting then respond, but at times if nothing to comment on pass on by". We can't respond to every posting.


#7

 

In fact, I'm sorry but I would go so far as to say it's spitting the preverbial  'dummy out' for no reason, it took a few posting when I first started to get any response from anyone, but I prevailed.


#8

It`s also holiday time. Shame . Sometimes the people who need the forum the most will be the first to give up.

Frances


#9

O dear poor editha 

if you want to talk move round the forum , as some just go to the same postings and don't really look at all the new ones you can join in any of my conversations but I like to talk about life  in genaral more than PD I do talk about  PD just not often . You sound a bit pissed off and you have every right to be with this PD but put brain in gear before you hit the post button everyone here is in the same boat as you remember . So let's start again please go on you know you want to at least you could tell me to f.. K off ha ha !! Tooraloo Lord o the highlands 

Ian 


#10

Am still waiting and am no going anywhere till you say something lol


#11

Come on Editha  

oot you come talk to me !!! Just one hello or even a wee f..k off the choice is yours your smiling I can tell so post now for your free chance no obligation conversation with us on here . I'll be back 

Lord o the highlands Ian 


#12

O deary poor editha do you hate me the most ,    Or is it that queer ones that will not post 

you give up to easy it has to be said         all my nice postings and you haven't read 

Could it be your a little bit stressed       You can hide if you want but am not depressed 

your maybe not happy with your diognose     A bit of a shock for you then I suppose 

maybe some day we will get you on here        And I'll be the first to give a big cheer 

it won't cost you nothing to be polite             It would stop me writing all of this  s.... 

So that's the end of today's patter          If you don't want to post it really don't matter 

so now you see we like some good fun too      The balls in your court it's all up to you 

am gonna retire now as I need little breaks   All of this writing it gives me the shakes 

we are all waiting to hear from you.    This is me Ian that says tooraloo    X


#13

Hi, I am back. Sorry for going off in a huff.

In the meantime I’ve joined my local P UK group. I go to their exercise class weekly and dance class fortnightly, which I enjoy. I had a few weeks of physio last year which was very helpful, but really what got me going again was the madopar.

My husband and I also went to a Parkinson’s Action Day organised by the Parkinson’s nurse, but found it depressing. There was an awful lot of talk about dementia. My mother has Alzheimer’s so I know quite a lot about dementia and didn’t really want to spend a day contemplating my 80% chance of getting it myself.

I am still on a very low dose of madopar, but there has been deterioration recently and I’m experiencing a lot of pain in my left leg, which spoilt a holiday, is draining me of energy, depriving me of sleep and generally bringing me down. I’ve posted on that under the symptoms forum.


#14

Hi Jane,
Im glad to hear that the madopar has had a good effect up to now. Im on Ropinerol only and at the stage of making decisions about meds.
I wonder if you’re meds need tweaking to help your leg? It’s difficult to know if its PD or something else.
I agree that being faced with too much information on our future with PD /dementia etc is alot to handle. I prefer to take it day by day. Right or wrong. Others may disagree!


#15

Have your home disable friendly. (grabrails where u need them), parking badge for your car… homehelp…