Newly diagnosed


#1

I am 57 and was diagnosed just over 3 weeks ago and I feel like have spent most of that time sobbing my heart out. I feel so frightened and alone. I have been really quite poorly for the last year but was told it was just anxiety and stress. Whilst I think the meds have helped (certainly others have commented that I am less slow and rigid) it is very slow progress. I can't sleep, have to force myself to eat and can't speak to anyone about it without howling.  I know I should be positive but my over riding emotion is despair. Just wanted someone to share this with in the hope that it will be helpful to admit it. 


#2

Hi SG and welcome to the forum,

I'm really sorry that you are struggling after your recent diagnosis, but I just wanted to reassure you that you have come to the right place. Here you will find plenty of people who have gone through what you are going through right now and hopefully, as you say, sharing it will help you come to terms with it and get back on your feet.

We also have a free and confidential helpline available to you. You can call us on 0808 800 0303 between 9am-7pm Monday-Friday and 10am-2pm on Saturdays. Today lines are open until 2pm and they will reopen on Tuesday at 9am after the bank holiday, so please give us a ring for practical and emotional support. You can chat to our trained advisers and Parkinson's nurses, who will be able to help you with any questions you may have.

Take care of yourself and please keep us posted on how you are feeling and how we can be of help.

Best wishes,

Mara
(Moderation team) 

 

 


#3

Thanks Mara.  I have thought of phoning the helpline but at the moment I don't think I would do anything but cry!  Hopefully I will be able to do so soon. 

 


#4

SG

So sorry your struggling. With diagnosis some people experience a grieving process and it sounds to me as if that is what you are going through. I won't tell you to be positive etc because I know that can hurt when you feel so down. You do need to talk with someone at this time. It is hard to talk on the phone when your so upset, but the pd nurses on the helpline will be used to helping distressed pwp and will not rush you. They may be even be able to suggest help close to home.

If it was your GP telling you it was just anxiety and stress, I understand it might be difficult for you to speak to them but it might be an idea to try. You could ask to be referred to a local pd nurse if there is one in your area.

The only other thing I can think of is sending you cyber hugs and hoping you feel a little stronger to cope soon, feeling for you Porthos


#5

hello sg

                 i was only 36 what a shock to my system crying,getting drunk ! then thought i need too get a grip ,not just for me but for my wife & kids ,& not forgetting my black labrador me who made me get up &  walk her then i had time & space to think what i was going to do next so i seen my pd nurse who gave me my meds spoke to gp who gave me pills for sleeping ,pain,stress ,i know alot of people do not like pills ! sort my work out plumber ,gas fitter speak to my boss ok .my pd stayed under control for many yrs & got a bit out of hand ,but pd is not going to win,so got fitter,lost weight found new friends ,hey had to finish work but manage 6yrs ,so what im trying to say its not the end,its another life where you got to make the most of it, ie lots & lots of holidays & fun !.  hope this helped big grin .gus  


#6

Thanks all. I have always been a very positive person so am finding the tears and despair alone very hard to deal with.  Perhaps the GP was right when she suggested pre diagnosis that I was depressed and anxious. Just been out for a walk with my supportive husband. Very hard but I did it.  


#7

Hi sg

you will be fine if you try from within yourself remember your not alone we are all here !  And you say you have a husband that's good , we will always talk to you that's good , your p nurse will be nice to you that's good ,you tell us your story that's good ,hey am good ! Now you have a wee grin try and hold it all day ! Think of all the good things please we all love you sister 

take care  Ian xx


#8

SG

Depression and Anxiety are just 2 symptoms of Parkinsons. Hubby was so bad with depression he was sectioned a year before diagnosis. So talk to your hubby, go for walks but also go back to GP and get some meds for your anxiety!

Ring the helpline, find your local PD Nurse (ours is lovely) and get support and write down your concerns and symptoms, so you can't forget when talking to GP or PD nurse! Lots of help out there and there is this lovely forum.

 


#9

Thanks Kev. Good to know it is not just me. The thought of talking to strangers face to face or on the phone horrifies me. It's bad enough with family and close friends!  

Best wishes

 

 


#10

Sg you are not alone all of us on here has experience the trauma you are going through we are are here to help and guide you so do despair all you need do is ask.

Take Care BB xx


#11

Hello SG

I hope that you are beginning to come to terms with the diagnosis.

I was diagnosed 4 years ago, and although I knew there was something wrong the last thing I thought about was Parkinson's. I worked as a Senior Charge Nurse and thought I was far too young for that to be the diagnosis, I was 51 oops forgot that it affected younger folk as well. At my first Neuro appointment I was told they thought PD, but would have a DAT SCAN to rule out anything else. I was at the appointment on my own as I had told my husband that I would be told nothing wrong - hearing the consultant say "have you heard of Parkinson's that's what I think you have" I just looked at him and cried oh me what a fool in front of medical students and a Consultant at the hospital I worked in. 

Anyway to cut a long story short, my husband was very supportive and found the local support branch, and through this we have made a completely new circle of friends.I remember thinking how can I continued to nwork,but I did until last November had planned to retire then anyway, as a nurse with no break in service I was able to retire with my superannuation pension, so it was my decision not that PD has got the better of me. I might have Parkinson's but it doesn't have me. I told my staff at a team meeting of my diagnosis and from there on I am always raising awareness of the condition. Last week I was in the local primary school at the cassembly so daunting telling 400 children and tapering it so that they all understood. The children asked questions and one or two of them who didn't know before give me a wave and ask if I'm OK.

 I would say to you everyone deals with things differently but we are all here for each other. 

Take Care and best wishes

 

Helen