Young onset support

I’ve been diagnosed for about 18months. I’m in my 30´s and have 3 young children. I’ve really been struggling to come to terms with this diagnosis and I have told very few people. Does anyone else feel ‘embarrassed’? Young women tend not to get this and my dystonia, giving me a lump, causes unwanted attention and questions from so many people. I’m sick of lying about it but I don’t want to tell people.
Are there any support groups for younger pd sufferers? Does anyone else feel like this?

Thank you


Hi Busymum,
We just wanted to say that what you are feeling is perfectly natural, and you are not alone in your feelings as someone with young onset Parkinson’s. We recommend that you give our helpline a call at 0808 800 0303, as they can find local groups and resources for you. And of course you can find a wealth of accumulated knowledge on our website. This page on YOP has lots of great info to start. You’re sure to hear from others in your position soon, members of our lovely and supportive community, but we wanted to be sure you were aware of these options as well.
All the best,
Moderation Team

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@Busymum3 please do not be embarrassed about your condition. My husband was diagnosed last year at the age of 43. He found the thought of telling people scary but once the news was out he felt so much better. No trying to hide his tremor any more. So many people, family and freinds have been so supportive and you will gain strength from that. Hold your head high and smile at the world and all it throws at you. You can and will start to deal with it all so much better when you’re not alone and trying to keep it a secret. Be brave and take care xx

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@Busymum3 I’ve told most people who I see regularly and I have received nothing but sympathy and offers of support.
Matt @Sungover runs a very informal Zoom for YOPD people such as myself. Do drop him a line and join in, only about 6 of us at the moment, very friendly group. Take care.

As mentioned we have a YOPD Zoom Meetup meeting tonight at 7.30 if you fancy it. Send me a message and I’ll send you the details.