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Mar 28, 2018

Effects on young people ...

8 comments

Edited: Mar 28, 2018

At our monthly gathering on Sunday morning we met with established friends and welcomed new faces. We had a great time and conversation flowed. There was much common ground and shared experiences. All of this is wonderful, however what about the two teenagers who sat quietly and listened. How do we engage with a younger generation about such a 'tricky' subject and understand their feelings and needs? Our aim is to support the whole family and not ignore certain subjects or issues. If PwP's and partners find it so valuable to meet and discuss their needs then we need to find a platform where every family member can air their opinions and concerns.

 

Margaret
Mar 28, 2018

This is interesting. Being a mum of a teenager I think we've always tried to create an environment that is Parkinson's friendly in that any scary talk was and is discussed out of earshot so she's never been too worried. As long as mum is ok she's ok. Having said that every child/teenager is different so yes a platform would be great but would have to be very carefully delivered.

Philip
Mar 29, 2018

We deal with the impact of Parkinson’s as a team effort in our family My eldest supports my wife and drives my youngest to her activities of an evening and weekend. However tensions can escalate quickly as we don’t discuss the root cause. We did have a round the table ‘summit meeting’ recently which helped. I guess that the important take away is that face to face discussions are the best and leave Snapchat etc for selfies and pictures of pets.

Margaret
Mar 29, 2018Edited: Mar 29, 2018

We also have a 6 year old as well as an 18 year and yes I agree there are such differing needs in our family that sometimes tensions can arise particularly if I am having a difficult time. I think your summit meeting sounds like a really good idea! To be honest we probably don't talk enough about my PD we just get on with it. I don't like to make a fuss and my husband deals with it in practical way. We are very different personalities so managing life and PD i akin to keeping the plates spinning. Maybe we need to adopt a similar thing and have a group discussion. Difficult to figure out how best our children could engage. I find too that my husband tells me I should delegate more responsibilities to my daughter but she is away most of the time at university so when she is home don't want to put pressure on her and I also don't want to become used to help and then it's gone again. I'm sure if she had someone to talk to she would benefit from it.

Amanda
Mar 30, 2018

It is difficult. My children have grown up knowing that I have Parkinson's (my son was 6 and and my daughter was 4 when I was diagnosed, eight years ago), and are both very emotionally supportive towards me. Unsurprisingly, though, neither are keen to offer help with housework etc. unprompted and I am reluctant to put pressure on them. Both of them have social or emotional problems that are significant enough for their schools to have expressed concern, and I can't help but think that my condition is likely to be a factor, although my husband is less sure. Neither child finds it easy to talk such things.

Margaret
Mar 30, 2018

I completely understand Amanda I think we're going to run into more problems with my son in time. He is very sensitive and sadly has never known me pre PD. It's not lost on me that with him growing up so I will have no doubt progressed. Very hard for you at times I'm sure. Do you have plenty of support? No I don't think we'll ever be able to put a fun spin on housework sadly. Best wishes

Amanda
Mar 30, 2018

I have support but I'm rubbish at asking for help! I do tend to try to do everything myself and I still find it hard to acknowledge that I am less able than I was.

Margaret
Mar 30, 2018

I am exactly the same. I will struggle rather than admit I need help. I think I am still in denial with it all still a bit. I commit to things without thinkin and then panic about how I'll manage. Do you think it's because we're 'mum' and we soldier on? I'm a work in progress that's for sure.

Lor5
Mar 30, 2018

My dx was confirmed in 2003 in my 40th year and when our sons were 10 and 13, this following 6 years of tests which culminated in a DaT scan telling us what I’d known all along. The youngest was 5 when I started Sinemet so they were always used to me taking regular meds and knew Mums legs got tired but otherwise, mainly due to my thankfully slow progression, they werent really aware of Parkinsons as a big thing, until their later teens when my pd began to bite! We had agreed we wouldn’t hide it from them and we didn’t, but nor did we talk about it with them, until we really needed to. That was pretty much the same with most other people too really, I guess it was talked about on a needs must basis.....no big bombshell, more a steady dribble of information.

 

I wrote my Parkinson story in 2015 when our sons were aged 22 and 25 and we asked them to read it. This was the first time they’d actually been aware of the whole story and they both cried. My PD now affects me every day but I’m proud to say they are the most caring empathetic sons a mum could wish for. They both live away but check on me regularly every week and our relationships are good and open! Interestingly they deal with it differently; the eldest is more hands on when he’s here, not shying away fromhelping me apply my medication patch, but giving practical solutions to resolving the situation when tears get the better of me; crying is something I still try not to do in front of them, whereas the youngest jokes with me amd when tears fall, his hugs are the best!

 

 

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