Hi everyone, I’m new here. My name is Amanda. I’m turning 60 on April 12th and was diagnosed with Parkinson’s two years ago on my birthday. I had sadly lost my Fiancé two weeks prior in March, so being told I had Parkinson’s kind of went in one ear and out the other at the time. A week after being diagnosed I had to go through the funeral. After this I was off work for some months and enjoyed returning back. However within a short time I was struggling in more ways than one. So I’m currently off work as I need to concentrate on my health etc. I’ve been finding things harder lately and, to be honest, I’m struggling more than I expected. Some days feel overwhelming, and I’m still trying to get my head around how much life has changed. I’m hoping to connect with others who understand what this is like. Any advice, support, or just hearing how others cope day to day would really help.
A very warm welcome to the community - I’m really glad you’ve found us, though I’m so sorry for everything that’s brought you here. Losing your fiancé and then receiving your diagnosis so close together is an enormous amount to carry, and it’s completely understandable that things feel overwhelming right now.
I think I can speak for everyone when I say that you’re not alone in feeling like this. Many people here will recognise that period of trying to process a diagnosis while life feels like it’s shifting underneath you. It can take time, and it’s okay that you’re still finding your way through it all.
It’s also really positive that you’ve reached out. You’ll find lots of shared experiences, tips, and support from others living with Parkinson’s. Be kind to yourself on the harder days - taking things one step at a time really does count.
Our website is full of information, advice and resources. And if you ever feel like you need a bit of extra support, you can also reach out to the helpline: 0808 800 0303. Our trained experts and specialist nurses are on hand anytime between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays (Our helpline is closed on Sundays and bank holidays)
Hi Amanda. Just wanted to say hello. I was diagnosed about the same time as you but had really had the symptoms, if I’m honest, for quite some time and put it down to all manner of health issues. My uncle had PD and I knew some of the symptoms so as time progressed I ‘grasped the nettle’ and made a GP appointment. The rest is history. I’m so sorry to hear you were also trying to cope with bereavement at the same time. Life just throws everything at you sometimes. One thing I have noticed is that a lot of people don’t even realise I have PD because I try to cope as best I can but the thing that really catches me out is how tired I can get when we have visitors. I’m now retired which is a blessing. Try and keep positive. I’ve found it’s the best way I can cope and take each day as it comes. Regards. Sue
Welcome to the forum and you are clearly going through the mill at bit at the moment trying to cope with the loss of your fiance and your diagnosis. You will learn to live with both of these things but there is no telling how long it may take. The death of your fiance can trip you up unexpectedly sometimes, even quite a long while after the event and in a way, Parkinson’s is not dissimilar. I note that you were diagnosed two years ago but that doesn’t necessarily mean you have fully come to terms with it, and anyway (and I am guessing here) it probably hasn’t been a priority if, for eg, you were dealing with your fiance’s ill health.
Again I am guessing a bit, but from the way you write, it makes me think that you have coped with everything that has been going on and now, possibly for the first time in quite a long time you have the chance to stop and think about all you have been through and the life changing implications it has for you. You are facing, as we all are, an unknown future, You are right to put your health first and it doesn’t surprise me in the least that you find some days overwhelming or that you struggle more than you expected nor that you are incredibly tired. The replies you have received have both spoken a lot of sense and hope they have helped. For my part, I would just say that in simple terms, it seems to me you are going through 2 bereavements simultaneously - first for your fiance and then a second for the life you had before Parkinson’s that is slipping away. What you feel at the moment and how you are thinking is entirely normal; it is simply a process that you need to go through before you can come out the other side. All you can do for now is be kind to yourself, don’t beat yourself with ‘I should do this that and the other’ or ‘I wish I had….’ Take baby steps and recognise what you have and what you managed to do on any given day rather than what you have lost or not been able to do. It may seem trite but the brain is a very powerful instrument and if you can try and turn the negatives into positives, however small a thing it may seem, you will be on your way to finding your feet in the quagmire of mixed emotions from all you have been through.
I am not sure what you will make of what I have written, there’s little in it that gives you any practical steps you can take and I am aware that to some it may seem a bit abstract with little point. However I hope you will be able to take something from it that helps.
Hi Sue, Thank you for welcoming me and for sharing your story. It’s comforting to connect with people who truly understand what it’s like. It helps. Thank you
Hi Tot, Thank you for such a thoughtful and supportive reply, also for taking the time to write this! It means so much as all of it makes complete sense and has genuinely brought me some comfort, as so much of what you said really resonated with me. It gave me a different way of looking at things. Really kind of you!
Good evening Amanda .. so sorry to hear your news. I am 72 & live alone. I was diagnosed with Parkinson’s about 3 years ago. I have other health issues that are more bothersome. My personal advise would be to enjoy your life. You maybe have twenty plus years to enjoy, why be miserable?
I have lost loved ones & life did become empty as I live on my own. I could stay in feeling sorry for myself or make the most of things.
I used to play golf but can’t anymore & have taken up indoor bowls. I go 4 times a week & I meet people who have become friends. I find it a good reason to get up in the morning.
There must be things you enjoy doing .. painting, cards, walking, stately homes. There are cruises & holidays for singles. Do a list.
Maybe you should write a bucket list of things you want to do. Maybe even dating.
One thing you do not say is what you are struggling with. Is it the physical symptoms of Parkinson’s or the mental side of having Parkinson’s.
Someone once said “I have Parkinson’s, Parkinson’s doesn’t have me”.
Hello again Amanda .. I just put your post into Google Gemini their Ai platform.
Here is what it said …
Amanda, thank you for sharing all of this. You’ve been carrying an extraordinary amount of grief, shock, and adjustment in such a short span of time. Losing your fiancé, receiving a life‑changing diagnosis on your birthday, navigating a funeral, trying to return to work, and now facing the reality of Parkinson’s—none of that is small. It makes complete sense that things feel overwhelming. Anyone in your position would be struggling.
What you’re describing isn’t a sign of weakness—it’s a sign that you’ve been in survival mode for a long time, and your mind and body are finally asking for space to process everything.
Here are a few thoughts that might help you feel a bit more grounded:
You’re not alone in feeling this way
Many people with Parkinson’s talk about the emotional side being just as challenging as the physical symptoms. The uncertainty, the changes in identity, the grief for the life you expected—it’s a lot. Connecting with others who “get it” can be incredibly validating. You’re already taking that step by reaching out here.
Healing isn’t linear
You went straight from heartbreak to diagnosis to responsibility. There was no real time to breathe. It’s completely normal that things are catching up with you now. Taking time off work to focus on your health is not only reasonable—it’s wise.
Day‑to‑day coping looks different for everyone
Some people find structure helps. Others need gentler days. Some lean on support groups, some on hobbies, some on therapy, some on family. There’s no right way to navigate this. What matters is finding what gives you a sense of steadiness, even if it’s small.
Hi Steve2, so sorry I’ve only just seen your messages! Thank you so much for your advice, it’s very kind of you taking the time to reply and sharing what helps you.
I have tremors, Bradykinesia, stiffness, sometimes swallowing difficulties, fatigue like I’ve never known it!! apathy and anxiety. I think I struggle most with not feeling myself. I’m hoping that in time I’ll get that feeling back.
What you’re describing isn’t a sign of weakness—it’s a sign that you’ve been in survival mode for a long time, and your mind and body are finally asking for space to process everything.
You’re not alone in feeling this way
Healing isn’t linear
Day‑to‑day coping looks different for everyone