Young persons with Parkinsons


#1

Hi

I am 55 yrs old,dx with Pd in 2011,fortunately retired[worked for the same firm for 37 yrs] and living the life of Reilly but have never met anyone my age or younger with Pd  I have been to other PD groups and they are all very well organised and meet the needs of the more elderly folk but cannot relate to a different generation as my own without meaning to seem disrespectful Ihave recently contacted  a PD representative and we are meeting soon to discuss a way  forward to try and draw out those people who,like myself feel adrift from the Parkinson community Icant be the only PWP in this area and would love to start anything that could bring some benefit to the younger, less affected sufferers of this weird disease

Heres hoping   spider


#2

Sorry the area this post covers is Fife and Tayside


#3

Yes, Spider, you are relatively young but my oh was diagnosed aged 47, coming up to 17 years ago.

Yes young,  but not as young as some  who are diagnosed in their 30's or 40's. Members of our local branch are youngish, 40+++ to  70++++.


#4

Hi Spider

You can feel quite isolated when you don't know any other young PWP. They are certainly out there because roughly 5% of PWP are under 40 at diagnosis. You may know this already but there are support groups tailored for younger people and there is a list of them on this site

http://www.parkinsons.org.uk/tags-forum-and-website/younger-peoples-groups?page=2

There is one in Dundee and another in Edinburgh. More details on the Edinburgh group at http://www.edinburghparkinsons.org/ . I also know that the Edinburgh branch has a very active research interest group. Getting involved in Parkinson's research is an excellent way of making contact with a very active bunch many of whom are young PWP.

If you want to start something else focussed on young PWP its worth making contact with your nearest Branch and Volunteer support officer who should know of others in your situation. Nearest one to you is Gina Allen and her details are on the Edinburgh group page.

I hope that helps

EF


#5

Thanks for the info. Ihave already been in touch with a PD representative in the Dundee area who i am meeting next week to discuss starting a group The Dundee branch do not have aYPWP group, or used to but it fell by the wayside so will hopefully try to regenerate interest   Spider


#6

Hi Spider

Just to add to Elegant Fowl's suggestion about starting a YPWP group, here in South-East London, with the help of our Parkinson's Nurse Specialist, about a dozen of us are doing just that.  It's informal we lunch/meet once a month and have also started a weekly yoga class. As yet we haven't linked to the local Branch, but it could happen soon. Speaking for myself I find it very useful as we can all relate to each others situation and chatting about it helps.

Anyway, good luck with getting your group off the ground.

Mathsman


#7

The support groups are so important I am a member of Lincoln Branch and apart from support I have now gained some special friends. I am 49 was dx at 47 officially classed as early onset stage 2.5 and known as a fighter the ex chair lady nick named me FEISTY and it is so true. The PD will not win I will!!!!!!!!!!!!!!!!!!!!!!!!!!! 

In fact I have name it the B****

 

Best wishes to you all stay well & safe xx BB


#8

Hi Spider! I found this thread when I was Googling for a YPWP group in my area  - Dundee

I am 47 and was diagnosed around 2 years ago. Would be delighted to help get a group going, or even just meet other YPWP in the area.

How did your discussion with the PD rep go?


#9

Hi Hypermnesia Sorry for the delay in replying, been away  Discussions with the PD rep went very well and we had our first YPWP group meeting in Dundee last week on Monday evening,the 23rd It was a meal out and there were 14 of us in attendance, it was very informal and good fun. We have decided to meet again on the 13 th of May at the Queens Hotel Marketgait Dundee to which you would be more than welcome. I am co ordinator of the group with the assistance from  the area support officer Chloe Macmillan and we intend to meet regularly and see where it takes us Hope to see you or here from you soon


#10

Hi all,

I'm a slightly intermittent visitor to the forums, but I'm a "young" PWP - 44, dx at 39. I felt rather like you do, Spider, but possibly more isolated as I have small children and felt unable to venture out of an evening, despite discovering a YO group in nearby Newbury. It was on on the same evening as Cubs, which didn't help!.

So I resorted to the Internet. I found relatively little there, and most of it was American, which was all very well but I found the sociological and cultural differences were significant - and, of course, they can't spell :-P

So, having failed to find what I wanted - an anecdotal, personal approach - I created it.

Thus was born Blogging With Parkinson's
https://bloggingwithparkinsons.wordpress.com/

I get no revenue from this, just a warm fuzzy feeling when someone tells me that it helped them.

My son's at Scouts now and I do get to Newbury to the YO group occasionally. I haven't met anyone younger than me there yet, but I believe that I'm not quite the youngest member.


#11

Mathsman I'd love to know how and what you did to get a group organised? I voiced the need for one in Manchester on here a couple of months back and got shouted down for trying to arrange something outside of the parky forum. 


#12

Girlred

With respect I did not shout you down. 

I pointed out some general concerns about meeting unknown people met through the internet as a pwp.

I asked the PUK to advise.

Im sorry if @i come over as pedantic or overbearing or old or whatever, I dont mean to be.

Safety of vulnerable people is paramount as I know from first hand experience what I was and wasnt capable of under the influence of dopamine agonists and their ICD and risk taking behaviour side effects. 

You dont have to be "official" to set up any meeting formal or otherwise but if you advertise it through this forum then the PUK should make the decision whether that is acceptable.

Try PLOG on facebook they are an informal group but do have members who are involved with the PUK.

Just remember that this is the internet and things are not always as they seem.

I wish you every success.

L

 


#13

Hi Girlred,

My colleague Naudette also responded to you giving some tips and offering help - do take her up on her offer if you haven't already!

Best wishes,
Alethea


#14

Dundee and Angus young persons with Parkinsons group has recently reformed(re my post of the 5th of Feb in this section of the forum}. I had found to my dismay that this group had recently disbanded and sought with the assistance of an area PUK representative to try and revive the group and am pleased to say that this group is now up and running and recently had its second monthly meeting on Mon 1st June. So if there is someone ,out there who would like to meet with fellow YPWP PLEASE LET ME KNOWand i will give you contact details.We are a small band of people at the moment but hopefully numbers will pick up. Meetings are very informal and good fun


#15

Is there no one out there


#16

Hi Spider,

we done similar in Lincoln to no avail I think it is fear that keeps them away of seeing our common condition in the advance stages.

But at least we tried.

 

Regards BB