Hello, I'm new to the forum

Hello everyone. I’m just back from the hospital after being diagnosed with PD although the doctor says it’s benign tremulous Parkinson’s. I’m 53 and I would say have been very gradually getting worse over the last 2-3 years and so I promised my wife at the start of 2018 I would go to the doctor. After referral and various scans, a recent DAT Scan finally confirmed that it wasn’t Essential Tremor. Not sure how I feel at the moment - obviously disappointed I have PD but on the other hand I feel better I have a diagnosis and so ending any uncertainty and my symptoms could be a lot worse although I appreciate it’s likely that will change over time.

I’m here to learn from the collective wisdom of the group and so I thank you in advance for welcoming me.


Hi Simon, welcome to the Forum.

Very sorry to hear about your recent diagnosis. We have lots of information and advice that you may find useful on our website, which you can find here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

We’d also recommend you try getting in touch with our Helpline team, who are ready to answer all sorts of questions you might have about your diagnosis, and where you go from here. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Moderation Team

Hello and welcome. As you are not asking anything specific i won’t rabbit on too much suffice to say you’ll find us a friendly and supportive forum so do feel free to use us as you need. You may want to take a look at posts and replies from other newbies, when you are ready, it may help you to clarify what to do now, it’s common for folk to be a bit bewildered and on reading the posts you’ll get a flavour of the often repeated advice on how to manage the early days.
Sending you my best wishes and we are here for you and your family if and as you need.

1 Like

Hi Simon,

It takes time to digest the diagnosis, so just be patient. Sounds trivial, but that is true.

To give you some comfort - I was diagnosed at the age of 44, so you had almost a decade of a PD-free life more than me, so it could have been worse. But life moves on…

Good luck and see you around!

Hi Simon, your feelings are quite natural and it will take awhile to sink in. As you say now you know what it is and feel better, again for me perfectly normal because you have taken the first small step in a long journey by still being you and parkinson’s is something you are now going to deal with. But as someone once said one small step…
You will over time get use to us folks, we will share experience, be good or bad and we will get advice and friendship along the way.
Use www.parkinsons.org.uk lots of good advice and info especially in the early days. The helpline does what it says which is a nice change from some helpline so again give them a call.
So welcome to our happy band of merry travellers :sunglasses:

Hi, I too am new to this forum. I was diagnosed in Jan’19 at the age of 49. I tried to remain off meds for as long as possible and managed my PD with exercise; so much so my fatigue took over!

Last week i started on Madopar 62.5 and i have noticed some benefit; I’m not as stiff and my head feels less foggy; however i have developed a twitchy left foot (my PD is on the left side but wasn’t so pronounced in my foot). My question to the forum is “has anyone else experienced this when starting meds”.

thank you.

Hi Andrea, welcome to the community.

We’ve got lots on information about motor symptoms in Parkinson’s - including tremor, muscle cramps and dystonia - on our website, which you can find here: https://www.parkinsons.org.uk/information-and-support/motor-symptoms-parkinsons

We also have information on the side effects associated with Madopar/Levodopa: https://www.parkinsons.org.uk/information-and-support/levodopa-co-beneldopa-and-co-careldopa

You can also contact our Helpline for further advice. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Moderation Team.

Hello Andrea1 and welcome to our community. I can’t comment on your particular symptom but generally you will find that meds are a complicated element of PD. I tend to think of it as something of an inexact science and more of a balancing act. A change to your meds may need a bit of tweaking eg slightly lower or higher dose to find the optimum level. I would suggest you go back to whoever prescribed your meds to discuss your ‘new’ symptom and your meds. PD is a very individual condition where similar symptoms and circumstances call for different treatment plans so it is important your regime is right for you. Ì hope this helps.

Thank you! I spoke to my PD nurse who suggested persevering for the moment to see if things settle down.