Hi I’m 55 and have been diagnosed with PD, in May this year. I thought I I was OK; but I now feel like my world has com crashing down. I was a full time working mum, who never sat down, and I guess I’m mourning for my past life as I’m now so reliant on others. I also suffer with depression. I’ve had my meds reviewed, with no change; I’m just so sick of feeling ill. Is anyone else going through this?
Hi JNoonan,
We wanted to take a moment and welcome you to our community forum. We’re sorry to hear things are so challenging at the moment. We can assure you, however, as you will soon hear from our lovely community, that you are not the first to feel this and you are most definitely not alone. Tending to your mental health is an important part of living with Parkinson’s, and you should feel welcome to reach out for any help you need. We would urge you to discuss how you’re feeling with your medical team. You can also speak to one of our helpline advisors on 0808 800 0303. They have their own resources and in particular can help you find support in your area. They’re also friendly and always willing to lend an ear.
We hope this helps, and with our warmest wishes,
Jason
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Hi
I’m 48 and was diagnosed in June. I’m a full time working mum and feel like my whole world has crashed down. I have a history of depression anxiety and ptsd and at the moment I’m just a wreck. Getting out of bed in a morning is a challenge. I’m struggling with my medication cos I’m so forgetful.
The are no support groups in my area I can access as they all happen when I’m at work.
I’m so scared I don’t know what to do or what is happening to me
But you are not alone xx
Me too. I know exactly what you mean so you are not alone. I was finally diagnosed in August and seeing Parkinson’s nurse in about 10 days to start meds. Like you I was always lively although I am 65 and had a great social life. I now feel as though its all gone and am suffering badly with depression. Feel I’ve been robbed of my retirement
I’ve been diagnosed for a 1.5years and I’m 48. It is definitely depressing and not what I signed up for. All you can do is keep doing things you enjoy, exercise and take your meds. Don’t stop becuase of PD. There’s help and advice on ParkinsonsUK and if depression is really problemmatic your GP can treat that, counselling is also an option. We are all grieving for what might have been but the grief can’t define our lives.
Have a look at alternative therapies, metabolic therapy such as intermittent fasting and low carb diet , sugars are detrimental for your neurons . Red light therapy aka photobiomodulation can Improve neurological symptoms . YouTube has some good videos on alternative therapies and will lift you up and motivate you I believe
I’m really sorry to hear what you’re going through; it’s completely understandable to feel overwhelmed after such a diagnosis. Connecting with support groups or counseling might help you navigate these feelings and find strength in shared experiences.
Hello to Jnoonan and also to coop and Rob28 and welcome to the forum. Since you’re all very recently diagnosed and it would seem saying much the same, I hope you will excuse a reply addressed to you all. I see you have already had some input from @jason.mod and also from Podd and Lar. both of whom have had their diagnosis a little longer than you and I hope you find what they have to say helpful.
The first thing I want to say to you, upfront and straightaway, is that you will be alright. I can’t tell you how long that may take since we are all different and it is something of a ‘how long is a piece of string’ sort of question, but you will find a way of living with Parkinson’s. I am very aware that from your current perspective that must sound like ‘pie in the sky’ talk so you will have to take it on trust for now, but it will happen.
Parkinson’s in most people progresses very slowly so there is time to adjust and adapt. It will be 15 years come December when I was in the position you are now - newly diagnosed; I lived on my own long before my diagnosis and live on my own now. I have two hours help a week, that I arranged and pay for myself. She has no fixed jobs and I take the lead in what we do. When she is on holiday I don’t need anyone to take her place. There are 168 hours in a week, Karen comes for two of those hours per week. I think that can safely be called minimal help don’t you?
The early days following diagnosis can be a very strange time. On the one hand you are given this momentous news that even if you know nothing about Parkinson’s, you know is life changing and on the other nothing much seems to happen It can take time to sort things out, find the best course of action. The best thing to do now is just take some time to get used to your diagnosis. I and many others on the forum would strongly encourage you not to go mad reading everything you come across; chances are you will get information overload and/or remember only the blackest of stories. You will then feel like you are facing a huge black hole and the only way is down. Look for information as you need it. Nor do you need to give up on your plans for the future.
For me, if there was a way to be rid of my Parkinson’s I would of course take it but since there isn’t I work hard to remain positive and see it as just a different turn in my life. I have a well established exercise routine and you will probably find this hard to believe but I am actually quite content with my lot - and that’s a pretty good place to be after nearly 15 years. Underpinning everything is I never give Parkinson’s star billing - I am and always will be, Tot first and I happen to have Parkinson’s.
I’m not going to offend your intelligence by saying it’s easy to live with Parkinson’s, it’s not. It can be challenging, frustrating and there will be times when you want to stop the world and get off - but nor is it the end of the world unless you choose to see it that way.
This is a very long post - congratulations if you have made it this far and I hope that at least some of what I have written will reassure you a bit. Living with Parkinson’s is a marathon, not a sprint and you are barely off the starting blocks - take it slowly one day at a time.
Best wishes to you all.
To
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I’ve had my 1st appointment with consultant and an mri. just waiting for mri results and to see consultant to see what his plan is. I’m lucky in the fact I’m having more good days than bad days at the moment but when i do have bad day LO puts a helmet on and hides