Hi, Steve. Thank you so much for sharing your journey with us. It’s great that you’re already finding ways to manage things and stay positive, especially with playing music - it’s awesome to hear that it’s still a part of your life!
It’s totally normal to feel a little daunted at the beginning, but you’re definitely not alone. And it’s great that you’ve got a supportive Parkinson’s nurse. If you ever feel like you need further support or advice, you can call our free, confidential helpline for support and advice: 0808 800 0303 (available 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays)
You’ve found a great place here to meet people and share experiences. Don’t hesitate to reach out anytime you need to chat, vent, or share a laugh. We’re all in this together
I am 57 years old, and was officially diagnosed in January 2025, albeit my “symptoms” probably started in Mid 2022.
I used to play a bit of Guitar, myself, but have had to stop because my Left pinky finger developed a growth that meant my playing time was limited to 5-10 minutes. Hardly worth it.
I have been learning Japanese for almost 2.5 years now, which is difficult, but entertaining at the same time.
The easiest way to get going until you are more familiar with it is to click on reply. So if you click on reply to this message you should get a text box and you can type whatever you want to know and you can take it from there. Take heart, there are quite a few of us who don’t find the forum particularly easy to navigate but there are some help videos and becoming more familiar with it, you will find you can do what you want or need to do. Give it a try - click on return and you should be able to ask your query.
Tot
Wow, this is the most confusing forum I’ve ever used! I’ve just joined as I was diagnosed with Parkinson’s in October 2025, aged 62. My dad had it for years so I was always sensitive to any trembling/spasms I had, although at the start of this year I had a repeating muscular spasm that started in my right leg and then had a similar one in my right arm. These spasms/tremors became more frequently repetitive, so I saw my GP a few times this year, who referred me to a neurologist. I had to go private because there was over a year’s waiting list on the NHS. The neurologist diagnosed me within about fifteen minutes and put me on Ropinerole which has dampened down the symptoms.
I think I’m still a bit in denial mode about the condition. I’m caught between wanting to know more about it and not wanting to know one more damn thing about it. I’m trying to stay positive and take one day at a time and not worry too much about the future. I’m interested in discussing the subject in a positive and realistic way, but a bit scared of reading doom and gloom posts which I just wouldn’t find helpful or supportive.
Anyway, before this turns into War and Peace I’ll post this and see what responses I get (if I can find them ;-))
Hi @Jim8888 , welcome to the forum, and thank you for sharing what you’re going through. We hope that as you navigate the forum it will become easier to find things - especially replies to threads you commented on. You should get notifications to the top right of your screen every time someone replies to you, or uses your username in a message.
You mentioned you were recently diagnosed. This can bring a mix of emotions, and it’s normal to feel torn between wanting more information, and feeling like you’ve had enough. Taking things one day at a time is a sensible approach.
It’s good to hear that your treatment is helping your symptoms. You can join in the conversations here at whatever pace feels comfortable to you.
I too felt exactly the same way when reading quite sad worrying posts from people. I was diagnosed in February 2025 and really wanted to reach out to find out how others were coping and what I discovered was that everyone’s experience with PD is different. I personally feel supported by having this forum where you can share anything and people offer encouragement and advice. I follow the music thread and enjoy reading the new topics posted daily. Once you get used to navigating it I think you will appreciate having people ready to hear your own experience of PD and maybe you can help others too, so keep at it and see how you get on.
Thanks Dawn, I think if I can easily access the “new topics posted daily” then that would be a good start. Is there an easy way to find that page so that I can bookmark it?
Hello Jim and welcome to our club. I am 71 years old and was diagnosed in June 2023. I am sure I’ve had it for years, but put the symptoms down to other things. I am on Co-careldopa 2 pills x 3 times a day, which I have altered to suit my needs. I am also on Rasagiline 1 pill once a day. My symptoms were quite bad in the early days but have settled down now. I have learned what I can and can’t do and that helps. Easy to say but I wouldn’t worry if I were you. There are worse things to have than Parkinson’s.
Hi Steve2, thanks for that. I’m a bit paranoid about running out of meds and would order a year’s supply if I could. I take 4 pills (time released) in the morning, so my latest order of 112 pills lasts 28 days. I’m going to ask doctor to double the prescription to 56 days. The drugs haven’t stopped my shaking completely but definitely help. Stressful situations seem to make my symptoms worse, so I’m working to avoid them. Good to know your symptoms have settled and I do agree that there are worse things than Parkinson’s…..Cheers.
I see you have already had some replies which is great but I wouldn’t be surprised if you still don’t really know what to think and that, to be frank is about as clear as it gets when you are living with Parkinson’s. I concluded long ago that there as many different ways to manage Parkinson’s as there are people who have it - we may all have the same or similar diagnoses but our responses are often very individual based on all sorts of things like the sort of personality you are, your circumstances, your knowledge of the condition and so on. Having said that there is some common ground.
All the emotions and thoughts you mentioned in your post will have been shared by many here on the forum. The early days after diagnosis is something of a period of ever changing emotions - and as you were only diagnosed in October, that is very early in Parkinson’s terms.
Things do settle down and you will find a way to live with it. What I can’t tell you is how long or what form this may take because it will be the way that’s right for you. Many of us on the forum have been in the position you are now and have lived to tell the tale.
In most, Parkinson’s moves slowly giving you time to adapt and adjust.
It is tempting to read everything you can get your hands on, but the advice generally given is to stick with what you really need or want to know at this stage. To do more than that runs the risk of information overload and chances are you will only remember the worst case scenarios and make you feel like you are looking at a big black hole where the only way is down.
The forum is here for everyone and sometimes people do write posts that make it sounds like everything is awful and there is no hope. That may well be how they think, equally it may be just at the time they wrote the post, which hot it off their chests and tomorrow they had their mojo back.
In five days time, 9th December, I will be celebrating 16 years post diagnosis and I believe that is something worth celebrating. My medical team have long referred to me as being in the complex stage of Parkinson’s. That may be so in medical terms but is definitely not how I see myself. I remain living happily on my own with only 2 hours help a week that I arranged myself and primarily because it was a cost effective way of getting to appointments or getting around generally when I gave up driving but other than that it’s just me for the rest of the week. Of course there has been some changes over that time and Parkinson’s may have won the odd battle but he has yet to win the war. I am well known on the forum for being positive and for me that is key. I don’t define myself by my Parkinson’s - I am Tot first and I happen to have Parkinson’s. For me, keeping a positive mindset is the single most important thing I can do to live with Parkinson’s. That’s my way. Some choose to battle, some to pretend it’s not happening etc.
You will find your way through the jungle that is Parkinson’s but it will be your way, in your time, until that happens just hang on in there as best you can.
Thanks Tot, lots of good advice there. I think that trying to get the most out of each day and not worry about the future is key. Saying that, I also think it’s important to try and be realistic and, to an extent, have an awareness of what you could be up against. The trouble seems to be that nobody can tell you what that might be! It’s great to hear that you’ve kept on top of it for so long and still have that positive approach.
Thanks Lar, anything to stay positive I’m interested in! Being Scottish and living in Yorkshire my natural inclination is to be “dour”, so I’m trying hard to resist the temptation to see the glass half empty.
