Hi everyone, I am a Mum who has a son, aged 26, who has been diagnosed with yopd. This news genuinely shocked us as he has suffered with what Doctors believed was distonia in his right leg. He had a z lengthening procedure a few years ago and it didn’t work. Three weeks ago he had an appointment with a neurologist and parkinsons was discussed. He had his dat scan yesterday and the diagnosis confirmed. He doesn’t have any other issue that would make you think he has yopd so this has come as such a shock. He is very positive, however I feel this may not be the case in a few days once he has had time to digest this fully. Me, on the other hand, well I am a mess. I am 47 and terrified I am going to one day watch him die. I am terrified about watching him deteriorate. I am just plain terrified. I feel helpless and uninformed.
Hello @MumofYOPD, thank you for your post and welcome to the forum. We hope you find it a helpful place to ask questions, read people’s experiences, and speak to people who just get it.
We understand it must be a lot to take in for you and your son right now. You must be feeling a multitude of emotions. No matter how you are feeling, we’re here for you. We have a range of newly diagnosed resources to support you, your son, and others close to you: Newly diagnosed with Parkinson's | Parkinson's UK
We’ve also got information on young onset Parkinson’s, including places where your son can talk to other people in a similar situation: Young onset Parkinson's | Parkinson's UK
You don’t have to navigate this alone. We are here, and so is our wonderful community. If you or your son ever needs someone to speak to, we are at the end of the phone. Nothing is too big or small: 0808 800 0303. We are open Monday to Friday: 9 am to 6 pm and Saturday: 10 am to 1 pm.
Take care 
Thank you! After reading some peoples experiences already, this does seem like a very supportive place. My aim is to find some people in similar situations to me, as well as learn from everyone’s shared experiences.
Hi,
I’m a Mum with Parkinson’s and since being diagnosed February 2025 I have been a follower of this forum and finding it really helpful because we discuss all kinds of things and the one thing that I’ve learned above all is that you don’t die from having Parkinson’s, and we all have different symptoms and learn ways to cope with them for however many years we all have left.
The meds help some people and not others and can/cannot always be tolerated. But I personally find that they help me at the moment.
Finally Having a diagnosis for me was a relief because I had undiagnosed problems for a few years beforehand and now I was able to get help with managing my symptoms.
There’s lots of young people who post here and share their experiences, also asking for help from others when they need to.
I would say reach out here and hopefully you will gradually feel a little reassured.
Good luck
Hello and welcome to the forum.
I am 41 and diagnosed in Feb this year. I have been researching a lot into the disease and how I can counteract it for as long as possible.
Exercise and keeping active is highly recommended so I have been trying to allocate time out of my schedule to do that.
Diet and supplements is what I am experimenting with at the moment, I have cut out sugary snacks and fizzy drinks as that was affecting my sleep and general wellbeing. I am leaning towards a Keto / Mediterranean diet as I generally feel better and have more energy on days that I eat cleaner with no junk food or wheat foods.
PD effects everyone differently, there are various medications available too so it may be a bit of trial and error until your son gets a system that works best for him to keep the symptoms at bay and slow the progression of the disease.
I recently attended the YOPD zoom meeting hosted on this forum and found that to be very helpful discussing my journey and hearing others with theirs. Support is out there for you and your son so please do reach out and ask for help.
What is your sons symptoms, how does it affect him? Has he been given any medication?
Thanks, Rich
Thanks for taking the time to get in touch. It’s reassuring to hear advice and others people’s perspectives. I think I should say, my initial post was a very knee jerk reaction, my head was swimming. So far his only symptom is pain and tightness in his leg. This is something he has struggled with for many years and no intervention has helped. He went to a neurologist and he went through the bradykinesia tests and there was an issue with his left hand, which then led to the datscan. He is due to see a physiotherapist and occupational therapist shortly and he’s been told they will then decide what dosage of levodopra he should be on. It’s such early days, I’m trying to get as informed as possible. We are super close, but he’s a grown man, I can’t be there for appointments, this is his journey, and that’s what I’m struggling with. I don’t want to appear selfish and make this about me but naturally I worry.
Thank you for sharing your story with me. It really means a lot.
Thank you for this! It’s very kind of you to take the time to reply. My initial reaction just went straight to the worst thoughts in my head. He’s so young, it’s hard to wrap my head around. It’s really helpful to hear others insights as I have nothing else to rely on just now x
Hi again,
We have regular YOPD meetings in our area and it might be worth looking into seeing if you have any where you live or something similar.
I attended a 2 day PD First Steps course which was very informative and reassuring too. In fact I was very surprised by how much is available for people with PD and I have joined a singing group for people with PD which is really good fun.
These are just ideas and your Son may not be interested yet but by researching yourself is showing that you want to help him but not pushing him into doing anything that he’s not comfortable with, it’s his diagnosis and will need to come to terms with it in his own way. He’s very lucky to have you by his side supporting him so well done to you!
I believe a DAT scan can not definitely diagnose PD but is used to support clinical observation and judgement. I believe that diet and or fasting can help with pd symptoms.
Useful videos on YouTube for eg. keto diet for pd . I also have seen some doctors using a nicotine patch 7 mg say twice a week which is said to be neuro protective . Then there is red light therapy which is worth considering. Above all don’t dispare many avenues to explore.
Good morning .. I entered your post into the Google Gemini Artificial Intelligence. It is free to use. It came up with what you see below. I use Ai a lot & it helps me a lot.
Best wishes
Steve2
MumofYOPD 6d Hi everyone, I am a Mum who has a son, aged 26, who has been diagnosed with yopd. This news genuinely shocked us as he has suffered with what Doctors believed was distonia in his right leg. He had a z lengthening procedure a few years ago and it didn’t work. Three weeks ago he had an appointment with a neurologist and parkinsons was discussed. He had his dat scan yesterday and the diagnosis confirmed. He doesn’t have any other issue that would make you think he has yopd so this has come as such a shock. He is very positive, however I feel this may not be the case in a few days once he has had time to digest this fully. Me, on the other hand, well I am a mess. I am 47 and terrified I am going to one day watch him die. I am terrified about watching him deteriorate. I am just plain terrified. I feel helpless and uninformed.
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Ai response .. It makes complete sense that you feel terrified, overwhelmed, and unsteady right now. A parent’s instinct is to protect their child, and when something happens that you can’t fix with love, effort, or sheer will, it shakes the ground under your feet. Nothing about your reaction is irrational or excessive — it’s the reaction of a mother who loves her son deeply.
Here’s the most important thing to hold onto first:
Young‑onset Parkinson’s is not a fast‑moving, imminently life‑shortening condition.
People diagnosed in their 20s and 30s often live for decades with good quality of life, especially with modern treatments, physiotherapy, and lifestyle support. The image many people have of Parkinson’s — rapid decline, severe disability — is based on older individuals diagnosed much later in life. That is not the typical trajectory for YOPD.
You’re not watching your son die. You’re watching him begin a long journey that he can still fill with work, relationships, joy, independence, and purpose.
What you’re feeling — and why it’s normal
Your mind has jumped straight to the worst‑case future. That’s what fear does. But fear is not a prediction; it’s a reaction to uncertainty.
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Shock — because the diagnosis came out of nowhere
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Grief — for the life you imagined for him
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Helplessness — because you can’t “fix” this
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Fear — because you don’t yet understand what YOPD actually looks like
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Loneliness — because parents often feel they must be strong for everyone else
These emotions don’t mean you’re failing. They mean you’re human.
If you want, we can talk about coping as a parent, understanding YOPD, or how to support him without overwhelming him.
What YOPD usually looks like over time
Young‑onset Parkinson’s tends to progress slowly. Many people diagnosed in their 20s or 30s:
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Continue working for many years
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Stay physically active
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Respond very well to medication
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Maintain independence
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Build families, careers, and long-term plans
The neurologist will guide treatment, but nothing about this diagnosis means your son is suddenly fragile or facing a short life.
If you want, I can walk you through what progression typically looks like.
Your son’s reaction vs. yours
It’s common for the person diagnosed to feel oddly calm at first — they finally have an explanation. Parents, meanwhile, often feel the full emotional weight immediately.
Your fear that “he’ll fall apart in a few days” is understandable, but it’s also possible he won’t. Many people with YOPD adapt remarkably well once they understand the condition and their treatment plan.
If you’d like, we can talk about how to talk with him about the diagnosis.
What you can do right now
Here are a few grounded, practical steps that help parents regain a sense of control:
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Learn the basics — not by Googling worst‑case stories, but through reliable sources
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Ask his neurologist questions — write them down ahead of time
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Connect with other parents or carers — hearing real stories is grounding
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Take care of your own mental health — you don’t have to be “strong” every second
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Let him lead — follow his cues about how much he wants to talk
If you want, I can help you create a list of questions for his neurologist.
You are not helpless
You can’t change the diagnosis, but you can:
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Be his anchor
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Learn alongside him
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Help him navigate the system
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Celebrate his wins
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Hold hope when he can’t
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Let him hold hope when you can’t
You’re not watching your son disappear. You’re watching him face something difficult — and he’s not doing it alone.
If you’re up for it, tell me what part of this feels the heaviest right now. I can help you untangle it gently.