I was diagnosed last week with PD.
The consultant said my right side was really bad and I couldn’t even recite the months of the year backwards I don’t know whereabouts on the scale I am as I forgot to ask all I know is that he said a PD nurse would be in touch.
On top of that I have an ESA50 to fill in for a reassessment. What do I put on the form?
When telling people I have PD they have said that’s terrible so sorry.
Has anyone else felt that they shouldn’t say anything and they feel embarrassed?
My head is in a spin and don’t know where to start.
I am worried about being on my own in the day time and even more worried about trying to go out as last Monday night I had yet another fall.
I was worried about going out before being diagnosed but it seems to be worse now is this normal?
I hope you can understand what I mean.
Hello Bub1, please be assured you are not alone in your reaction as a quick look at some other new member posts will show you. Firstly try not to panic or let anxiety overwhelm you, easier said than done I know. Second give yourself time to just get used to your diagnosis, you don’t have to sort everything out at once. There is a lot of clear information available on the Parkinson’s uk website but might I suggest you give the helpline a call and speak to someone 0808 800 0303 - reading between the lines you seem to be in turmoil and torment at the moment and I think you will find it helpful in where to start sorting things out. This forum is an excellent place where we will willingly share our stories, give support or whatever will be helpful and someone or often many someone’s will come through to help. So you may feel and physically be alone but on the forum we do understand and you need never be without support. I know this does not have much in the way of practicalities for you but u would encourage you to stop and draw breath, then look at what you need to do or find out one step at a time. I promise you, you will be ok and find your way to live with PD. It is not easy and may from time to time let you down, but it is possible. It is a learning curve we all go through, and you will survive. Take heart, a deep breath and go one step at a time.
Hi Bub1,
We would completely echo Tot’s post - it sounds like things are really tough at the moment, but we wanted to let know that we can provide you with a variety of different support options and help.
Our friendly team will be on hand in the morning from 9 A.M. so do reach out to them on 0808 800 0303 - they’ll be able to advise you about your ESA50 and all manner of different topics relating to day to day living.
Best Wishes,
Tom A, Moderation Team
Thank you.
I will give them a ring later.
It’s not that the ESA50 is new to me I have day few. My last medical assessment was 18 months ago.
I have a lot of medical conditions I have just put Parkinson’s at the top.
My family support network is quite small as all of my family have passed away.
I think I need to sit down and take stock of everything that has happened.
I am so glad I found this support group
Glad we’ve helped a bit let us know how you are getting on. Best wishes.
I feel a bit more positive today. My son took me out for lunch which I enjoyed.
I had a text message from my gp surgery saying that they have received a letter from the neurologist. So I rang them my son can pick up a copy of it tomorrow so I can send it with my esa50 as our post here is slow so may not get my copy for a couple of days not in time to send my form back. I have an appointment with my gp on Wednesday to discuss letter.
Does anyone know how long it is before Parkinson’s nurse contacts you?
Tjanks
Re the Parkinson’s nurse it seems to vary. I was lucky and introduced to mine during a consultation with my consultant when new in post about a year after my diagnosis. I now see her and my consultant once a year at 6 monthly intervals but can contact either if needed in between. I know from the forum some have great difficulty in contacting let alone seeing him or her. I hope that is not your experience.
Was pleased to hear you were feeling a bit more positive and hope your plan to take stock is working out for you.
you have access to a PD nurse?
what’s one of them?
lucky you
I do indeed and know I am lucky but really luck shouldn’t come into it