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
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.
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 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.
Before you start reading this please be aware that it is long and I don’t provide any magic answers, or how to deal with this issue; rather it is more of an article as it got me thinking - some of it is things you perhaps need to be aware of that could make supporting a child/young adult difficult, the rest is really just thinking round the issue more widely and which may make some think a little differently. If you make it to the end I congratulate you and if it has helped anyone in any way at all well that’s a bonus.
These two articles are not about Parkinson’s but it may make you think about what you can actually do if your child is an adult.
Hello to all who may be interested in this thread. The above may help however you are all quite right when you say advice and support on helping teenagers and older children come to terms with a Parkinson’s diagnosis is a little thin on the ground. Their needs are different to those of younger children who are likely to ask simple questions, be content with simple answers and in effect get used to having Parkinson’s around as something they grow up with. I generalise of course and I am not suggesting it is easy, just different but their ability to understand will be on a different level to that of older children.
I don’t have any magic answers but I think it is worth pointing out that there are many issues around being given a diagnosis of Parkinson’s that may complicate what and how older children learn about Parkinson’s. These may include (in no particular order):
That Parkinson’s is not a generally well understood condition and many who are diagnosed know little if anything about the condition until it comes knocking on their door. It can be completely devastating, it can feel like the end of life as you knew it, hopes and dreams gone up in smoke and that your only future is one big black hole where the only way is down. It can take time, sometimes quite a long time to understand that is not the reality but it may make it difficult if not impossible to explain something to your children that you don’t understand yourself. Even the best guides and literature may lead to questions about the consequences for your particular family which with the best will in the world you may not be in a position to answer especially in the early days following diagnosis.
Many newly diagnosed keep their diagnosis secret, many can’t even say the word Parkinson’s to themselves let alone anyone else. People have to go at their own pace to take it on board and in some that can take a long time. This is clearly not the best circumstance in which to support a child/young adult
Parkinson’s a very complex condition which affects everyone differently so any books or guides can only speak in general terms which might differ to what the children/young adults are actually seeing.
It is my view and I stress this is my personal view, that much depends on the way a family dynamic works and their ability to communicate. If children have been involved and included with all that has gone on leading up to getting a formal diagnosis, then in a way you will be learning together which may help. A parent’s natural instinct however is to protect the child and so this may not happen even if it would normally.
In thinking about how to help children it must be remembered that there will be implications for the relationship between the parents and other family members as all will have their own struggles to understand what it all means.
This is just a general point as it has been mentioned a few times, but if you don’t see someone for a while in much the same way as it can shock to see how much a child has grown which is less noticeable when you see them everyday, so it can look like someone has deteriorated badly when that may in fact not be the case at all.
I have no wish to make a difficult subject even harder but these things, it seems to be can’t be seen in isolation and an awareness of the impact a Parkinson’s diagnosis may have more widely is an important element of helping children/young adults understand. I think growing up as a teenager in Britain today is much harder than when I was that age and equally I think being a young adult is much tougher than when I was starting out in my working life. There are many reasons for this but however hard it may be today, they will have to do as I and everyone else does during this period of transition, work out for themselves what life is about, or what life means or whatever you want to call finding where you fit.
Maybe looking for conventional support systems to help teenagers and young adults come to terms with a parent’s diagnosis of Parkinson’s is not what is needed most. Maybe instead parents need to take their cue from them and let the understanding develop at their pace, in ways that they want rather than thinking you, as parents, should be doing something more. Maybe it’s best to be honest and say you don’t have all the answers but ultimately it is how you deal with it as a family that in my opinion, will do most to help all cope with it.
I have often written on the forum to those that are newly diagnosed that they will have a rollercoaster ride of emotions and that anything they think and feel is legitimate, that their is no right or wrong way to living with parkinson’s only the way that is right for them. I think this could equally apply to older children/young adults. They have to find their own way to understand the implications of having a parent with Parkinson’s and that will take as long as it takes and it may be different for each child. All you as a parent can really do at the end of the day is be there for them, keep the lines of communication open and be honest and say you don’t have all the answers but it’s not all bad. Perhaps it would be useful if you come across a useful post you share it, perhaps encourage older children to post their own questions, hope and fears on the forum and get some answers from people living with Parkinson’s.
As I said I don’t have any magic answers but perhaps have given you a bit of food for thought. Please do bear in mind this is only my view borne out of replying to many posts on the forum where you learn to see common threads emerging and which seem to have some bearing on this particular thread.
I send my best wishes to you all and hope you all manage to safely negotiate this tricky path.
Hi Tot, thank you so much for sharing your thoughts about this and the useful resources. I agree there are so many more complexities for young people these days and what they want support wise is likely to be very different. We took the path of being open about what is happening which I am really please about as things have progressed quicker than we expected. Like you say the impact is wide reaching. One thing we have found helps is permission to have a giggle (with a level of sensitivity!) - seeing the funny side, it seems to help demystify things and helps us all feel PD is something we can all handle. I also will ask the children directly when I have them cornered in the car on their own how they are feeling about it all and whether they have questions- the car is the perfect place! Would be interesting to know what others do?
I totally agree Kipper. Parkinson’s at times is just a silly condition and funny things do happen so having a laugh about it is all you can do. I myself get a lot from a bit of black humour but you do have to be a bit careful with that for obvious reasons; however there is usually more than a bit of truth in it but some people can’t take a bit of truth even in humour and you have to br mindful of that, For what it’s worth, if I were in your shoes I would be doing exactly what you are doing because for me the only way is to be open and honest including sometimes being able to say you don’t want to talk about x at the moment. I wish you and your family well as you all find ways to live with Parkinson’s.