Hello - New to Forum


#1

Hi,

I was diagnosed at the age of 35 in August last year, I am still in the process of "coming out" as having Parkinson's to friends and family.

When diagnosed I gained a lot of peace of mind as I had finally had a label for symptoms that I have had for a long period of time. 

I am hoping to find support through the experience and advice of those who have had similar experience here on the forum.

More I guess when I work out what to say, other than hello, I am here and I look forward to learning from you!

Claire


#2

Hi Claire  and welcome...i love the "coming out" comment.....that certainly is a good description.

Like yourself i had peace of mind to finally be given  a reason to why i had  felt so ill for so long, in fact i did some research myself and so was not surprised when i was diagnosed with the "Parky"

I was diagnosed in 2013 but it appears that i have had it since about 2009.

You will get lots of support on the forums, we are a friendly bunch and understand how you feel.

So keeeeeeeeeeeeeep posting .....and keeeeeeeeeeeeep smiling matey

Best wishes

Dolly x


#3

Thanks Dolly,

The welcome is much appreciated :)

 


#4

Welcome cmj

Dina be shy !! Post your symptoms and you'll find people with similar problems as yersell , were all different but all understand ,try and make light work of it all good luck look forward to your  posts what ever be happy as we all have a lot of life to come through yet  good luck 

Ian (north east Scotland ) xx


#5

Thanks Ian, I will bear that in mind. I think that talking about my symptoms is still quite hard.

I will try to come up with some decent posts at least!

Thanks

Claire


#6

That's a decent post Claire 

your never alone on here , take care keep reading posts but most of all be happy 

ian xx


#7

Hi CMJ,

Welcome to the forum! You've certainly come to the right place for support from other people who share similar experiences.

Our website can also be a helpful tool. It, for example, provides information about the support we give (http://bit.ly/1MLBQC6). You'll also be able to read through our publications: http://bit.ly/1eb1pOh

Please feel free to give us a ring on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm) if you'd ever like to talk to our trained advisers, including specialist Parkinson's nurses, who can provide information and advice about all aspects of living with Parkinson's.

Best wishes,

Ilona (Moderation Team).


#8

Hi Claire

I am quite new to the forum, I joined a couple of weeks ago.

I was diagnosed in Oct last year, I was diagnosed on the Wednesday and went in to work the following day.

I sent all my colleagues an email to say that I had been diagnosed with PD, as I wanted to let them all know but I did not want to have to repeat it to each one of them, I also told my Family the same day I received my diagnosis.

Having PD is not something we choose to have but it is not something that we should be embarrassed about having (if that is the right word).

The forum is great because you get to speak to people with PD and also people who are looking after Friends or Family members who have it.

I know that everybody deals with things differently, and you will tell your Friends and Family when you feel ready, but them knowing will give you that additional support and you cannot beat a big hug when you are feeling down and you cannot get that from a computer.

 

Take Care and all the very best too you xx

 


#9

hi I am just new to this site, I was diagnosed just yesterday and feeling very confused today

trying to get my sesible head on without much luck

 telling family was very hard as it came as such a shock " as it never happens to you "

my mum is 87yrs old and have 'nt had the heart to tell her as she is so fit for her age,

please someone out there let me know how there first day went .

granny2


#10

Hi Granny2,

Sorry to hear about your recent diagnosis. I can remember coming home from the hospital and telling my husband. He just stood there in shock and disbelief. I didn't cry until a few days later, when I'd convinced myself that life as I knew it, was over. You will not be able to put your sensible head on, for some little time. It took me about a year to come to terms with it all. (diagnosed 4yrs. ago).  Like you, I hadn't the heart to tell my 89yr. old father and he went to his grave this April, aged 93, not knowing.

Please talk to people on this forum and share your feelings and emotions. No-one will judge you or be unkind. We're all here for one another to try and help. You've made a good, positive start by writing your first post the day after your diagnosis.......something I couldn't have done!

All the best.

Twinks.


#11

Aye aye gran

it's a fair dunt to the system eh!! A lot to take in and a bit of fear too PD won't kill you like some things can so keep that in mind you will live a long long time so we're better of than you think , but I felt it better to get out there and hide nothing as it's going to show anyway just make sure when you decide to tell anyone the family are the first to know , at least that's what I did then my boss and after that I just told others and felt better when I did . But hey gran we're all different. You do what's right for you .am no good at giving advise that's just what I did you do what feels right for you its your parky welcome to the forum 

( mad highlander . Northeast Scotland )

ian xx


#12

Hi Granny2 ....and welcome. Well the day i was told  by the Neurologist  was a relief, i had an answer to why i had felt so poorly for so long. I was finally diagnosed in 2013 but had the symptoms  for at least 4 years prior to that. I had a pretty good idea after searching the net! but i didn't mention that to my Husband.  He got very upset when i told him and was in shock, but that  afternoon we were going to our dance class and i told him that was the best thing to do but we would keep it to ourselves for the time being, though i have since realised that one or two had a good idea that i had "Parky" we danced and still do, though we will never make "Strictly" it does help with my balance and mobilty also the music  is very uplifting.  My Mum is 87 and had a serious  stroke at 66 which has affected her short term memory considerably. I decided also not to mention it but she had already guessed apparently and asked me!! ....

My Husband had a Brian tumor removed 2 years ago and another op for Hydrocephallus plus cancer and it has changed his attitude to life...as the Parky has for me. We refuse to think about the future, and make the most of every day. Life is for living and if  this has taught us anything ...it is that.

You will find  lots of support here Granny2, we are a friendly bunch who all understand how you are feeling, so if you want a chat anytime you will always find a listening ear.

Keep smiling and best wishes to you

Dolly x


#13

afternnon Twinks

 

thank you for these kind words, you  are so right I dont think my sensible head even excists at this time

there are so much to try and undestand its mind blowing 

my husband is trying to protect me and doesnt understand I need some independance very hard for everyone

early days   take care

granny2


#14

hi Ian  thank you for your kind words

early days, but finding joining the forum very helpfull knowing I am not on my own.

I was aat st andrews about 3 weeks ago and know scotland really well. looking to go agin in a few weeks place where I can switch off  love it.

take care

granny2


#15

Aye aye granny 

that's best a.wee holiday will do the world of good 

all the best Ian xx