Hi, we are a few days into a new diagnosis of PD for my mum. It’s really comforting reading some of your stories. Everything just seems a bit scary at the minute. Fear of the unknown. Will she have a PD nurse who will come to speak to her and explain things? Not really sure what happens next?
Thank you
Hi @KY and welcome to our friendly forum. A new diagnosis is difficult to hear, which is why we are here to support you and your mum. I’m so pleased you’re already finding reading about the members’ experiences helpful. I’m sure that before too long you’ll hear from others who will have faced this challenge themselves.
In the meantime, our website is full of information about many aspects of Parkinson’s and we invite you to explore at your own pace. You’ll find this ‘newly diagnosed’ section very helpful for answering your questions at this early stage. As well, it’s important that you get support for yourself as a carer and you’ll find that section here.
Our helpline and Parkinson’s local advisers are available to answer any questions you may have, so do ring us on 0808 800 0303 or email us at [email protected].
Best wishes,
Janice
Forum Moderation Team
Hello ky and welcome to the forum. First thing to say is being scared is ok, the diagnosis brings with it the one of the few certainties in Parkinson’s and that is facing an uncertain future and who wouldn’t be daunted by that. Second thing to say right now and up front, just so you know, it’s not all doom and gloom. It does take a bit of getting used to, it can be challenging and frustrating but it is possible to have a good quality of life for many years. Come Christmas, or to be accurate just before, will be my 12th anniversary of diagnosis. I live alone with minimal help ie 2 hours a week which was of my choosing and I manage pretty well. I’m not unusual, it is slow moving in most so you and your mum have time to get used to the diagnosis and your feelings about it all. I often think that the strange thing about getting the diagnosis, after what has been for many a marathon to get to that point, can be something of an anti climax. You will discover that treatment of Parkinson’s is symptom control and you will also discover everyone’s experience is individual; this means there is a large element of trial and error, what suits one doesn’t necessarily suit another and all things need time to try them properly.
I see you have been doing a bit of reading and am glad you found some comfort in this. You write your Mum has only had her diagnosis a few days and I’m guessing you are still in shock so I think it best to keep things simple for now and see how you go. I and others on the forum generally say the following to newbies such as yourself;
We caution against reading anything and everything you can get hold of. Most end up with information overload and end up in a worse state than before. Instead take time with your mum to identify what would be helpful for you now and concentrate on those. Write down your questions so you don’t forget anything.
Services and systems are variable. The helpdesk is a valuable resource and will be able to point you in the right direction on many things. Never be afraid to seek clarity from your mum’s consultant, GPor whoever. It is important to understand what plans etc are. The forum is an excellent resource you can trust the information because it comes from people like me who live with it or carers, family, friends etc who have a connection with it. It is also a safe place to let rip if needed, someone will invariably come by to virtually hold your hand or give you a hug so never be afraid to use it just as you have bravely done here.
All of us with Parkinson’s have experienced and survived the early difficult and confusing days. Your mum will too and so will you. You will both find a way to cope which works for you. My way is to stay positive, yes I have my moments but a positive mindset is what works for me it helps to keep Parkinson’s in it’s proper place. I will always be Tot first who happens to live with Parkinson’s. I don’t feel sorry for myself (most of the time!) and don’t want anyone feeling sorry for me. My personal mantra is I have Parkinson’s it doesn’t have me. With a bit of time and patience your mum will find what suits her too. I wouldn’t wish Parkinson’s on anyone but equally it is not the end of the world unless you choose to see it that way. It will be a different life but is still your mum’s life it has just taken a different path.
Do let us know how you are getting on. I hope I have helped reassure you and your mum a little. Take care.
Tot
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Hi KY I have had Parkinson’s since July 2016 and still changing medication to try and control symptoms. It is daunting and at first I tried to obtain as much information about Parkinson’s as I possibly could from “DR GOOGLE”, which was the worst thing I could have done and I remember posting on this forum in my early days of diagnosis and a couple of lovely members, Tot being one of them, really put my mind at rest and I have now discovered that yes Parkinson’s does change your life but I now have the outlook that it could be a lot worse and Parkinson’s is manageable x
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Good for you Poppyseed123, remember you have Parkinson’s it doesn’t have you - you come first always ie Poppyseed123 who happens to have PD it doesn’t and shouldn’t define you as a person. Hope you get the meds sorted they make such a difference when you’ve got them right. Good luck to you and take care. Good to hear my post amongst others helped last time,
Tot
When my husband was first diagnosed we received very little help. We had to ask to see the parkinsons nurse however that changed and he gets physio and help with his vision and he has been supplied with various aids. Phone your GP and ask to see the North parkinsons nurse.