Newly diagnosed aged 47

Diagnosed yesterday… aged 47…. What next?

Hi and welcome to the forum, @Jonie1976. Our members are a friendly and supportive lot and they are sure to be along soon to say hello.

You’ve asked a very big question with so many different answers. Everyone’s experience of Parkinson’s is different and if you explore this forum and our website you’ll see exactly that. I’d really encourage you to do some exploring on the site and start with the Information and Support section and go from there.

Any questions you have along the way, pop them in here or ring our helpline to speak to our advisers on 0808 800 0303. They will be happy to speak to you.

Take care :blue_heart:
Forum Moderation Team

Hello Jonie1976 and welcome to the forum
As JaniceP has said you ask a big question with many answers and she gives you some sound advice to follow up when you feel you want to.
It’s a strange time when you are newly diagnosed. You’re given this life changing news, for some it comes at the end of a long road to get a diagnosis for others it comes more quickly but whatever your own particular story many feel that something equally big should happen - but the reality is quite different. Life is exactly the same as the day before your diagnosis, if anything is different it’s how you are feeling and that could be anything from total shock to devastation and anything in between. You shouldn’t be surprised if you run a whole range of emotions which may change day to day or even hour to hour. Whatever you feel will be legitimate, perfectly normal and unique to you.
Having said that you ask what next? The short answer is to take a deep breath and give yourself time and space to get used to your diagnosis. You don’t have to make any decisions immediately, or change anything. Parkinson’s is slow moving in most and you could have many years of relative good health and will find you have time to adapt and adjust to any changes if, as and when they occur.
It can take a while following the diagnosis to sort out what treatment is best for you, which basically means will you start medication straightaway or not. Usually this depends on the extent to which your symptoms are impacting on your life and it is a bit trial and error to find what suits you but with a bit of time things do settle down.
I’m not going to insult your intelligence by telling you it’s a bed of roses, it’s not. It can be challenging and frustrating in equal measure. There will be times when you want to shut the door on the world and hibernate. Equally however you will find you can have a good life with Parkinson’s sitting on your shoulder, it will be different to the life you saw for youself but can still be a life worth living if that’s what you want. I can’t tell you how or how long this will take because it will be what’s right for you but it does happen. All of us who have been on the forum a while will have been where you are now and come out the other side. Others are new to the forum just as you are and starting to find their own way to live with Parkinson’s.
I myself am rapidly approaching the 14th anniversary of my own diagnosis. I live alone by choice, have minimal help that I arranged, and manage for the most part very well. You will find this hard to believe but I am really quite content with my lot. My own way of living with Parkinson’s is to stay positive, that is the single most important thing to me and I work hard to maintain that and if you read many of my posts you will see that is a very common theme, I have always been open about my Parkinson’s, telling people as soon as I had my diagnosis and family and friends follow my lead - I have Parkindon’s fact. There is no cure fact. But I am still Tot first and I happen to have Parkinson’s. It’s part of me but doesn’t define who I am. It works for me but there as many ways to live with Parkinson’s as there are people with the condition and you will find the path that suits you.
You will no doubt have a lot of questions. If you concentrate on those that are of more immediate concern and just get used to having Parkinson’s and sort out your feelings.
you will be doing alright.
The forum is here 24/7 come back any time.
Best wishes

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Hello Jonie,

Your head will be all over the place right now. You probably have so many questions you want answers to straight away. This forum is a great place to start. There are so many members on here who can help you with any questions you may have,who better to answer them than the people living with PD.

Tot as usual has given you some fantastic positve advice to start you off. I love to read any post that Tot writes, she is so inspiring and lives a very positve life you can’t go wrong taking advice from Tot.

Please come back and chat whenever you feel the need.

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@Jonie1976 As previous members have said lots of information on Parkinson’s UK website, when I was diagnosed my consultant told me only to look at two websites PUK and Michael J Fox, I would also recommend join YOPD group (young onset).

Stay positive, it will take time, don’t hesitate PM if I can be of any help.

Hi, I was diagnosed 2 years ago age 46

Hi, not great news for you, I know, but there are ways to take back control. The Cure Parkinsons website has some good webinars if you want to understand more about PD and information about trials if you want to get involved. You can also feel very isolated, so I would recommend a couple of podcasts - ‘2 parkies in a pod’ and ‘movers and shakers’ - both share lots of useful info as well as laughs.
Look after yourself.

Hi, I was diagnosed in March this year aged 57, I have never met or spoke to anyone with Parkinson’s. I speak to the specialist nurse now and again. I still find it hard to accept. My main issues/symptoms are being stiff and tired all the time, my tremors seem to come after physical activities like mowing the lawn. is it normal to find it difficult to get so much joint/muscle stiffness even though I am on Co-car ledopa. Is balance and bumping into things part of the disease.

Hi and welcome to the forum, @waynesmith. You say you’ve not talked to others with Parkinson’s before and this is the perfect place to meet them. They’re a very friendly and supportive bunch. You may also want to post something in the Introductions section - just click on the three lines at the top right to get the drop-down for Categories.

Accepting this diagnosis is never easy. No one wants to have Parkinson’s, but the other members here will relate and hopefully be along to chat about their own stories. Your treatment will continue to be adjusted if you let your healthcare team know when there are concerns.

Stiffness and joint pain are common, especially in the earlier months. Medication, exercise and things like massage therapy can be useful:
Parkinson's symptoms | Parkinson's UK lists common symptoms and how to deal with them.

As for balance, this is also very common. It may even be because of your feet! When your gait changes, your brain can’t work out how to move your body safely. Again medication and some physio can help with that. You can read more about this at Feet problems and Parkinson's | Parkinson's UK.

There’s so much more about all of this on our website so I invite you to explore in your own time, using the Search feature.

Finally, do give our Helpline a call if you need advice or support. You can find them on 0808 800 0303. You’ll find our holiday hours here: Helpline and Parkinson's advisers | Parkinson's UK.

Hope to hear more from you soon
Forum Moderation Team

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Good afternoon waynesmith & welcome. Most of us here seem to be called Steve, so it’s good to have a “Wayne”. I had a positive Datscan nearly 6 months ago. But like most here I’ve had “issues” for some time. Good to know what it is. I’m told I have Atypical Parkinson’s, which does not respond well to Parkinson’s medication. I’ve been on Ropinirole & Madopar. I have just started Co-Careldopa [2 weeks ago] & am up to 3 pills a day. I haven’t noticed it help or hinder yet.

My main problem is mobility. I freeze & struggle to walk. I too am a lot worse after activity. I also struggle to sleep some nights & am fairly tired all the time. I am
69 years old. 70 is only a few weeks away. Getting up from a chair is a real challenge & should become a national sport.

We are all quite normal, most of us don’t bite. So do ask questions if you have any.

With Parkinson’s everything seems to happen really slowly. Yes, balance & bumping into things is the norm. You can add falling over.

Best wishes

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You are in the write place, you can reach out and ask questions safely here. Your symptoms are known symptoms for PWP (people with Parkinson’s).

Having a tremor after any physical activity isn’t uncommon, my tremor gets more prominent when exercising than slows down.

I am a boxing instructor and we have opened a boxing class for fellow Parkies it’s been running for over a year, fitness aside the social interaction is just important, talking to others is good for our wellbeing.

Happy to talk if you want to private message me🙏🏽

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Thank you all, yes i will certainly use this resource from now on.

Welcome to the forum Sorry to hear your news but you have a wonderful group of people rooting for you.

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