Oh newly diagnosed support for teenage kids


My husband, in his early 50’s was diagnosed about 6 months ago although looking back he’s clearly been suffering from symptoms for a number of years. We have kids ranging ing from teenagers to early twenties. Oddly, it is our older kids who seem to be finding this hardest to deal with. They live away from home so don’t see dad for a couple of months or more at a time. It seems like every time they come home they see something that has got a little bit worse and it seems to hit them all over again.

Does anyone know of any support networks they could tap into? It seems that there is a real hole in the support available to young adults. I’d love someone to tell me there’s not

Hi Redc,

I’m sure there are members of the forum that have been in similar situations to you who will be able to offer their advice, but I also wanted to let you know that we have some information on support for family members, including teenagers here: https://www.parkinsons.org.uk/information-and-support/support-family-and-friends. This page also has information on how to contact the helpline, where you will be able to speak with our specialist advisors and get some advice.

There are also local groups that might be helpful for you and your family, you can search for any in your area following this link: https://www.parkinsons.org.uk/information-and-support/local-groups.

I hope this is helpful for you, and best wishes to you and your family.

Moderation team.

Hi Redc,

Sorry to hear about this for you and your family. My Dad was diagnosed around 6 months ago too when he had turned 60 and like your Husband, it looked like the symptoms had started well before then. It’s taken me and my sister a bit of time (and we’re still coming to terms with things). Something we’ve found helpful is being proactive in my Dad’s management of the Parkinson’s - there’s a lot of really positive research out there looking at the benefits of exercise in minimising a lot of symptoms - especially tremors and motor symptoms. I think when people are first diagnosed, in general the information we hear is so negative so seeing articles that show you a life after the diagnosis are really helpful. There’s a lot of youtube video’s to offer some hope about managing the condition too, especially through exercise so I wonder if it might help your kids to see these? It certainly helped me and my sister to know that Parkinson’s doesn’t have to be the end of a lot of things and that there can be really effective ways to manage, minimise or potentially reverse some of the symptoms.

I really hope things improve for you all soon :slight_smile: Laura x

Late to the party in replying here.
My dad was diagnosed with PD when I was a teenager and I’m early 20s now. There was never much support available for me and my siblings growing up and I’d agree that it does seem to be a bit of a hole in the kind of support that’s offered. Going to university and coming home after a few months and really noticing all the changes has always been the hardest part for me.
Just wanted to say that if your kids ever fancy talking to someone who understands what’s going on for them then please get in touch as I’d be happy to chat.