Hey Everybody,
Im relatively new here and also newly diagnosed, August 2024 i was 37…
Im still trying to work out how it fully impacts my life and taking each day, 1 day at a time…
My main symptoms are more muscle related… stiffness, weakness, fatigue and was struggling to brush my teeth or even shave myself!! Im currently taking what i think is alot of pills but they seem to be working really well so im happy!!
My main question is, was anyone else diagnosed “young” and how long ago was that and how have you progressed? Has it stayed the same for years or have things got worse… how much have your meds increased??.. for now i dont have a notable tremor… did anyone develop one years later??
Sorry i no thats a lot but as im sure you can understand i have a lot of questions and things going through my head…
Any help / advise or even just your progession experience would be a great help for me.
Thanks Everybody
GPT
Hello Geoff, I diagnosed in 2018 when I was 39y.o. but noticed simptoms at least 2 years ago. Started with rasagilin, and today Im also take PK Merz, Requip 14 mg and Alprazolam. First 2-3 years I feel great, only sometimes tremor in my right hand. Today I’m not so great, but not bad. Tremor got worse, I have trouble with walking, it’s like I’m losing my balance a little. Not every day, but when Im nervous or tired it is visible… My main problem is hiding simptoms from everyone, when someone looking to me its make me nervous and I start shaking. So I start to avoid people, which is not good, of course… Only if I had a different character, I wouldn’t have so many problems, but I can’t help it. Take care, Martina
Thanks martina.
I no exactly what you mean about when someone is watching you!! Sometimes i do have a tremor and when i think people notice it then it does get worse to!
Im currently on
1 x 1mg rasagiline
1 x 8mg requip xl
5 x 25mg/100mg sinemet (every 3ish hours)
Iv noticed when my pills kick in when i take them i cant stand still haha my other half says im dancing. I also work in retail so always talking to people… not good when trying to hide when my hands dont work!
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hi. im 34. i have been under neurology since January now. originally they diagnosed essential tremor. but those meds didnt work. my grandfather was diagnosed with parkinsons at 48. so my family know what it is.
however like you both i hid my tremor for over a year at work and when going out.
But that got me down and when i started primidone I had a physcotic episode due to the meds.
when i was getting the help from mental health services they told me to never hide it again and go out and stand proud. And also sorted out a lifestyle plan with me to find more time during the day it worked. now full of confidence and couldn’t give a monkeys of what other people thought. but now this week im having difficulties with movement and fatigue. so have asked to start levodopa that my neurologist had told me to try in may. just been smashing through the days with different ways of living and making lifestyle changes.
but now i feel i need some help to get me through the day.
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Hi Shaker_34, thank you for sharing your experience with us. We understand how difficult living with Parkinson’s can be, and we wanted to let you know that you’re not alone.
It sounds like you’re doing all of the right things by speaking to your neurologist and seeking support for your mental health. We hope that starting levodopa helps you.
If you ever need any extra support, we’re here for you. Our free, confidential helpline is available to anyone affected by Parkinson’s. Our trained advisers can offer support and advice, and you can ask to speak to one of our Parkinson’s nurses: 0808 800 0303.
Take care,
The Parkinson’s UK Moderation Team
Shaking and stand pride at the same time, for me - mision impossible. As. a woman, maybe I feel even worse. For egzample, I notice when I want to buy something nice always thinking: no sense to buy that nice dress with shaking hands and walking like Im drunk 
I’m glad that you both are brave and optimistic, I also trying, but it’s really not easy
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well we are just getting used to it. im sure i know its going to get harder as I get older.
my grandfather had parkinsons so i know whats like at the middle and end but I wasn’t even born when he got diagnosed. and my mum cant remember either. he was diagnosed at 48. and died at 81 in 2010.
Thank you for sharing, Shaker_34.
It must be difficult, knowing what your grandfather went through and facing similar challenges yourself. It’s understandable that you’re preparing for what may come, but it’s also important to remember that everyone’s journey with Parkinson’s is unique. While it’s natural to worry about the future, it’s also valuable to focus on each day, take things one step at a time, and reach out for support when you need it.
You’re not alone in this, and the Parkinson’s community is here for you! If you ever need advice or just someone to talk to, remember that our helpline is available at 0808 800 0303. Sending you strength on your journey 
Parkinson’s UK Moderation Team
thanks. cervical spinal scan came back normal. so its not dopamine responsive dystonia. full mri came back normal too.
just waiting on a date for the datscan now.