Need to chat with any one who's partner has young pd


#1

My husband has young onset pd and I have two teenagers. I live away from my family and often feel very alone. My Hubble doesn't want to join any support groups  so I never get to meet anyone who might feel like me. 


#2

Hi Busymum,

Welcome to the forum - this is a great place to share experiences with people in similar situations.

Please do remember that there is a range of support available for family members of people with Parkinson's. This link gives some more information: https://www.parkinsons.org.uk/content/support-you

Best wishes,

Joanne 


#3

Hi Busy Mum,  I know what you mean, though we don't have kids we are also not near any other family so quite isolated. Tried a PD support group few years ago, lovely people but all at least 20 years older and also more progressed with PD so a bit scary for us both tbh. Had nothing in common really so we stopped going. I'm not on here very often but hope it helps to know you aren't the only one who feels very alone at times and I hope you can find some support out there. We have a local carers group so you might too in your area. Ive only been once as I work and its in the daytime but if you cant find a PD support group maybe try a general carers one? Best of luck.


#4

Thank you for taking the time to reply x

 


#5

I was 44 when I got my first clear PD symptoms. We also went to some support groups and can relate to what you're both facing.

Talk to your PD nurse about what topics are coming up and ask if there are any other young onset and/or youngish long termers you could meet. You don't have to get on just because of PD so don't feel obliged to become friends.

I can definitely say that you do need some tips on what to watch out for and your true friends will be instrumental in keeping you on a positive track.

Have a read of the posts on this forum and consider personal messages to those you want to hear more from without it being posted on the very public forum.  You can then keep in contact however you want to.  

 

 


#6

Hi - my husband was diagnosed at 49, 18 months ago, so I am possibly older than you (not sure if that info is anywhere) but I feel very isolated too.  I have 2 young boys - nearly 8 and nearly 10, and I work full time, as does he.  Be happy to get in touch by personal email and chat x


#7

 

hi there are some  younger/working age groups set up around the country, i looked myself  but  it was very difficult too find searching through social media, my PD nurse wrote too me to tell me one was being set up in my area, if not there would of been none it seems, other than the established groups. which i haven't been along to yet.


#8

Hi,

There's a link here where you can browse Younger people's groups: https://www.parkinsons.org.uk/tags-forum-and-website/younger-peoples-groups-0. Everyone affected by Parkinson's is welcome to join the groups, including partners, relatives and friends.

Best wishes,

Joanne 


#9

Thank you for the link but there always seems a black hole in Cheshire 


#10

Thank you I would like to chat to you personally but not sure how we arrange that . 

I think I must be the same age but with teenagers. Xx


#11
Busymom I tried to private message you. You have to tick the box to allow private messages if you want to in my account then settings.

#12

Thank you I will try and amend it x


#13

My husband was diagnosed 12 years ago aged 31. We have had 2 girls since. Sending all of you big hugs, it can be really hard if your other half isn't ready to reach out. Fear of the future can be a big worry.  I've heard great things about the Peer Support Service and for me volunteering for Parkinson's UK was a great way to connect with others. If you are on Twitter there is also a youngpdnetwork #1in20parkinsons carers have written blogs to a share their experiences. When we finally linked up with other people with Parkinson's we wished we had done it sooner and have made some brill friends, most are older than us but we feel richer for these friendships. I'm a great fan of the self-management programme too (I'm baised as I'm a facilitator and now work on the team)


#14
Hi funniemummie Nice to hear from you and your supportive words. You hit the nail on the head that worry about the future is a big part of our lives now. And I struggle with days when I'm just thoroughly annoyed that this happened to my husband and want answers why which I know will never happen and would therefore change things. Mostly we get on with life though, as you do. Take care

#15

Hi Kendo

Looks like you are in /near Portsmouth? Me too, Southsea.
I was diagnosed over 12 months ago, with just tremor.....still the same now,no other symptoms to report.
 

Mick


#16

I was diagnosed at 47. From the outset I was determined not to let Parkinson's take over my life and control what I could or could not do. I joined a support group a year after diagnosis. Yes the members were older than me but I didn't feel left out. They are a wonderful lively  bunch of people and have become very dear friends. The group is very proactive too and there is plenty going on. I became a volunteer and am now a facilitator of the Self Management Programme which is wonderful  and so empowering. I have had amazing opportunities to talk to groups about living with Parkinson's. As I often say "Parkinson's has to live with me because I'm not living with it!"


#17

Dates and locations now published for Self- Management Programmes this spring http://www.parkinsons.org.uk/content/self-management-programme-path-through-parkinsons for all ages and all stages.

 

 


#18

Hello Busy Mum

My husband was diagnosed aged 43 and our children were teenagers then. We have dipped in and out of a branch support group near us. My husband wasnt keen at first and we avoided it for three years.  It has helped and we have met some lovely people. A lot are older but there are some of a similar age. I would be happy to share details.  I dont feel there is enough support for partners of someone with PD.  I did get a bit of support from a local carers group and attended a communication workshop which was helpful. The carers uk website is quite good for information.  Our local information support worker with Parkinson's UK has been a marvellous source of information.

Hope that helps a little. Thinking of you. Someone via the forum once sent me the most lovely posting of words and it gave me a real boost. I still refer to it know. There are a lot of people who understand how you are feeling.  Be kind to yourself and look after yourself.  

Maggie

wink


#19

Hi there Busymum,  I have only frequented this forum quite recently and wasn't sure what to expect, whether or not i would be frightened by messages or experiences posted on here that i hadn't experienced myself yet. One basic thought comes into my head is 'positivity' the posts i have viewed show unity and strength and yet everyone being so individual I was 46 when i was diagnosed with PD,. I have two grown up children and an extremely active lifestyle, i work too. i maybe not the person you wish to chat to but i can always lend an ear and help in that way if you wished. half the time just getting your thoughts out to people who will listen is enough.. Isolation when you have worries or concerns is not good, it makes a situation twice as hard to deal with. Talking is good!


Barnowl1