Forum newbie checking in

Hi all, I’m Rach. My husband was diagnosed with Young Onset Parkinson’s in 2016. His symptoms are fairly well managed with medication which allows him to work and live pretty independently. However, as anyone who may be familiar with the condition will know, the meds can come with some unwelcome side effects including dyskenesia and impulsive control disorders, and he needs extra support when his meds are on their “off” periods. He has been referred for Deep Brain Stimulation surgery which we hope will ease some of his symptoms and allow us to reduce his meds - although I am fully aware from my research on this topic it is by no means an easy process or “magic cure”.

This forum is the first time I’ve really reached out to anyone for support for myself. Up to now my priority has always been for my husband, since he is the one who actually has the condition. Back in 2016, when I was a sponge for information about YOPD and the support we could access for my husband, I was resentful of suddenly being cast into the role of “carer” in all the information and guidance we would come across. My brain’s response would be, “I’m not his bl**dy carer, I’m his wife!”. In recent years this has morphed into reluctance (“Others are more deserving of this label and the support that comes with it; I’ve got it easy in comparison”). But recent events have made me decide to get over myself and reach out to others who may be in similar situations or have shared experiences.

The turning point came last week when my husband admitted to having hid an Impulsive Control Disorder for more than a year. He had suffered with this previously when they tried to introduce a new medication to his routine. Luckily he recognised what was happening and informed me and his PD nurse about it and he was taken off them. To compensate, his usual meds were upped a little bit last summer. What I didn’t learn until last week is that his ICD had come back, albeit in a slightly different form, and developed to the point that it put him in a situation where he thought he was in danger of being blackmailed. Panicking, he decided to “confess his sins” to me, so to speak.

Despite the initial sting, I knew that this was not uncommon and at the core of it, this was a medical issue. I reassured him that it wasn’t his fault, that it was a good thing he told me and got it out in the open, and we agreed on a set of actions which included contacting his PD nurse and setting some restrictions on his devices. The most upsetting thing for me was seeing him so broken emotionally; he said he felt like his personality was trapped in a coffin. It was devastating to see him so upset and to to learn he’d been living with such heavy burdens of shame, guilt and fear.

Having to set up parental controls on his apps and devices was like a bucket of ice cold reality to the face. While I know it’s for his benefit, at his request (and may only be temporary while we get through this latest bout of ICD), it made me realise I can’t run from the label “carer” anymore.

So that’s my story of what brought me to this forum today. Sorry it’s a long post and thank you for reading if you’ve made it this far.

If there is anyone on here who is willing to share their experience caring for someone with YOPD, please reach out as I’d love to connect with someone who is perhaps further along in the journey, particularly in relation to DBS surgery.

Thank you.

Hi @R8h (nice abbreviation btw!) Rach,
Welcome to the forum.

I read everything you’ve just shared. I hear you and I’m glad you can connect with us. What an emotional rollercoaster and big shake-ups in terms of your identity and marriage relationship.

My journey is different - I helped my Mum look after my Dad, and now look after my Mum and neither had YOPD, but it’s similar in that I had to do a big mindset shift in my identity too, and in my relationship with my parents. I moved back to the UK from Brussels (after many relocations for my job), resigned from work in 2017 and when Mum was diagnosed with cancer I took care of my parents 24/7 from 2019 onwards. You’ve obviously been doing a lot of reflection which is not easy, as we all know. I hear your pragmatism and strength in what you’ve written, but also the emotional strain. We’re here for you, we get it.

I think we each have our own story, and I hope others can offer their insights and experience with YOPD, DBS surgery, and medications.

If I can offer support feel free to message me.
For a little light distraction check out our rollcall thread.
sending empathy, hugs and more strength


Hi rh8
Welcome to the forum
I don’t have experience of young onset Parkinson’s. However my lovely late husband suffered strokes vascular dementia and other health issues. His personality changed somewhat, as in extremely verbally aggressive at times and when he had delirium the accusations to me came thick and fast. Shocked me to the core.
I understand this isn’t much help to you but I understand the hurt and upset you feel even though deep down it’s not their fault.
Do you have any friends or family support? Anytime just for yourself.
I’m certain others will be along with some advice etc.
Just wanted to say I’m listening



Welcome to the Forum. I have no experience of young onset Parkinson’s but I can relate how very hard it is to move from ‘wife and partner’ to ‘carer’ and how hard it is to keep your own identity. I often refer to myself as ‘Little Drudge’ because that is what I feel like most of the time.

My husband is 23 years older than me and apparently does not have dementia having done very well at the Memory Clinic back in May - I have to say I do not agree. He had a brain heamatoma back in 2013 and even then a scan prior to this showed considerable brain atrophy. I can totally get the frustration you feel towards your husband at times and tbh it is completely normal and you should not ever feel guilty about this.

You do need to find support for yourself. I agree with Victoria that the Roll Call is fun and a safe place to share your feelings with regard to caring.


Welcome to the forums. Tell us about your hobbies.

Hi @R8h A very warm welcome to the Forum!

You had a very rough time of it. You say you shied away form the title ‘Carer’ and that’s exactly what so many of us do/did for ages. We carry one caring without a capital ‘C’ because of our love for our Carees. There is absolutely no shame in being a Carer even though mostly we are undervalued. I have been told ‘oh you’re just a carer’. My response these days is “YES - how many hours a week do YOU work; how much PAID holiday do you get?” Pointing out many of us ‘work’ 168 hours a week and get NO holiday causes disbelief. One of our very good friends said to me not long ago ‘you need to get time away’ and when I said ‘WHEN? HOW?’ he replied ‘well you can get someone in…’ Gee thanks mate!

My situation is much less difficult to yours. My Dad moved in with us for a short time until he developed dementia =- although none of the rest of the family would accept the diagnosis. His behaviour drove a wedge between us and he sadly left to live with my ex-sister in law (who turned out to be rather a money grabbing xyz…).

My husband, Graham, suffered a stroke at New Year 2022 and was making a reasonable recovery but suddenly encountered a myriad of other health issues. We worked together and I had to close the business with little warning to take on the role of “JUST” a Carer. Since then he’s been up and down with heart issues, prostate cancer, respiratory issues, retinal haemorrhage and postural hypertension - I tell him I think he is going for a ‘Full House’. We’ve been through dreadful continence issues and after all that we are still going strong. I have no idea how! Been together 26 years and civil partnership a bit over 10 years ago (just to make it more awkward for me to escape).

On the Forum you can share, let rip, sound-off, seek advice or information or just be you as it is anonymous and those of us on here know what it is like to be fed up and want to “stop the world so I can get off”.

Others have mentioned the Roll Call thread - come and join us for some fun and a general moan whenever you want.

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Welcome to the forum. My life changed forever when my son was brain damaged at birth 44 years ago. He lives in a flat 15 miles away, but I am doing things for him every day. I’ve also cared for other family members. Is your husband claiming Personal Independence payment, PIP? Whilst everyone else will be focussed on your husband, we are concerned for you. It’s OK here to say you are finding life hard, we all do, some times it seems totally overwhelming. On my bad days sometimes I just go to bed early. Your own health is very important too. When did you both take a holiday?

Hi, R8h. I care for my wife (spinal cord injury) and we have two sons - one lives with us: he has mental health issues and an injury to his neck that causes sporadic spasms, the other lives in a supported living environment - he has severe autism, with some speech. I also used to work in a carers centre, where I worked with a wide range of carers. Quite a few of us have railed against the word “carer”, when we’re spouses, parents, etc.

I like to describe it as “this is my husband/Dad bit, but this extra bit here - that’s the carer bit.” It’s the bit that’s over and above the norm, the fighting for services/support - even for a little understanding of the stress and sheer hard graft of being in this situation. If this was a commercial, I’d describe myself as a “Husband and Dad, now with added Carer!”

Anyway, hope to see you on the “Roll Call”!

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@Charlesh47 That’s interesting Charles as Graham always introduces me to medics as ‘This is Chris, my Husband and Carer’. You are right - it DOES show the Value Added… (but please don’t tax that next…)

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Hi R8h,

I thought I post a welcome here but maybe I’m thinking of the one on Roll Call. Will respond properly later on.

Anyway welcome :hugs:

I have started a spin off thread here:

Thank you everyone for your responses and the welcome. I appreciate everyone who took the time to read and respond.

I’m glad I found this forum. I had dipped into the carers/family members forum on the Parkinson’s UK website but this community feels much more active and a “safe space” to share, vent and connect. So thanks again.

Just to reply to a few questions:

My mum is a community nurse so she is the person in our lives who understands the most about what Parkinson’s is, how it can affect people, and how caring responsibilities can impact on relationships. But we don’t really talk that much about the emotional stuff, more about the practical things (we’re both a bit emotionally stunted in that respect lol). That said, when I was upset the other day, it was she who encouraged me to reach out for support for myself. “You can’t look after anyone else if you don’t first look after yourself”. The rest of our friends and family are all very supportive but it’s not really easy for me to talk to them about it. That’s more to do with my own discomfort with talking to people closest to us about private matters/emotionally heavy stuff than any kind of slight on them though.

Football has always been my way to escape as well as connect with others. I’m a Spurs supporter and season ticket holder. I’m only getting around to replying to messages in this thread because I was round my friend’s house yesterday afternoon watching the Premier League games on Sky. Had a little too much to drink so feeling it a bit today! :sweat_smile:

We’ve got one coming up next month which we’re looking forward to. We’re staying with some friends in Cyprus for a week so it should be a fun and relaxing break and a chance to soak up some much-needed Vit D! We’re very fortunate that we have that as an option, especially when so many others don’t have that luxury.


Sorry, I missed this question off in my last reply. No, he doesn’t claim PIP. We are fortunate in that he was diagnosed early and so progression is relatively slow. So he wouldn’t qualify for PIP right now. There will come a time where he won’t be able to work (he is a driving instructor) and will need that extra financial support but he is reluctant to talk about this which I completely understand. We hear a lot about how maintaining a positive attitude is so important for combating PD so I don’t want to push him until he is ready. He is pinning a lot of hopes on DBS surgery giving him a few extra years of semi-normality and independence. Right now all I can really do is prepare as best as possible, plant my feet and get ready to roll with the inevitable punches (metaphorically speaking!).


Hi, R8h

Just a quickie. PIP isn’t just an out of work benefit: some people are entitled to it even though they are at work. Like most benefits, it’s a bit complicated but this booklet helps: Personal Independence Payment 2023-24 (

It’s well worth a look to just check to see what, if anything, your husband might qualify for - it could help to keep him at work a little longer.


Thanks @Charlesh47 that is a useful guide. Sorry I wasn’t clear but currently (fortunately!) he scores too low to meet the criteria for the time being. Appreciate you following up though


Any update OP? I hope things are okay.

Hi @thara_2207, thanks for following up and apologies for the tardy response.

I had a good chat with his PD nurse the day after my initial post. The changes we put in place since then does seem to have helped with his impulse control disorders, although he has noticed his dystonia at night is giving him more discomfort and affecting his sleep.

We have our bi-annual appointment with the neurology team next week so hopefully we can talk it through with them in more detail and find a good balance.

He has his first DBS assessment scheduled in early November and his consultants are confident the surgery will help with some of his symptoms and allow them to reduce his meds further (which in turn will help with the dyskenesia and ICD).

For my part, I’m just trying to get the balance right of equipping myself with the knowledge to best prepare us for what’s to come without straying too far into trying to strategise for all potential outcomes and hiccups, such that I run the risk of being overwhelmed and disheartened. Overall though, I remain optimistic.

Hope all’s well with you.


Hi R8h - glad to hear things are improving a bit. You’re right to avoid overstrategising, if that’s even a word (!), but it can be helpful to prepare for the stuff you know to expect or that is a distinct possibility. For example, although it doesn’t happen often, Gill occasionally has severe diarrhoea without warning. The bed is protected as best we can without pads or unnecessary precautions for a more or less once a year thing, but all the gear is easily to hand to deal with the first explosion - bearing in mind that it’s usually a three or four day event - and everything else we will need for the rest of the time is ready to go immediately afterwards. But we don’t have the commode in the bedroom unless it’s actually needed. There isn’t enough room for it for a long term arrangement.


Please give us a update OP. I hope things are better for you now.