My name’s Annabella I was diagnosed with Parkinson’s plus by Addenbrooks hospital two weeks ago I am 36 the scan also shows I have cortisol basal syndrome. I am waiting more appointments this week just feel scared and not sure what’s happening.
.They have put me on three meds just wait gp to prescribe. Also have to see neuropsychometry and movement disorder expert. They wanted to do mri but can’t because of I have a pacemaker.
Welcome to the Forum and thank you for your message. I am sorry to hear about what you have been going through, it sounds like you have been given a lot of new information which can often feel overwhelming. Being diagnosed with Parkinson’s affects everyone differently, but please remember we and the Parkinson’s community are always here to support you.
I am sure the other members will be able to share their own experiences with you, but in the meantime have a look at the information on our website regarding diagnosis - https://www.parkinsons.org.uk/professionals/resources/parkinsons-diagnosis-experiences .
You may also like to contact our helpline on 0808 800 0303 or email: [email protected] where our experienced advisers will be able to help you. The helpline is a free service and is open 9am-7pm Monday to Friday so please get in touch if you need us.
Best wishes and take care,
Emily- Moderation team
Hi Annabella sorry to hear you have been diagnosed with PD at such a young age. There are a few of you here on the forum. I was diagnosed at 49 last year. I have mild symptoms at the moment and I hope the same is true for you. My consultant seems to already have a long term treatment plan worked out for me when I need it, hopefully many years away. In the meantime I am keeping fit and healthy with cycling, running and badminton. Suggest maybe contacting your local Parkinson’s UK group who may have other younger people you can (virtually) meet. Cheers.
Welcome to the world of Parkinsons. We have all been there. I’m 9 years since dx. At first I read everything and thought I was going to get it all. It was terrifying. I stopped looking I was so scared. I now know Everyone is different and moves at different rates. Plus not everyone has all the symptoms. I have learnt that you don’t die from Parkinson’s But you have to live with it. Michael J Fox explains that he makes time for Parkinsons but doesn’t allow it to take over. He was dx 30 years ago at 29. I was lucky enough to get on the Management For Parkinsons courses run by Parkinsons Uk. It allowed me to meet people who have been dx over 17 years and still live a full and happy life. It puts it all in context. Good luck with your future, try not to worry to much as the future is not formed yet. It’s up to you to drive it forward to meet your need s
Take a strip back and allow yourself sometime to get your head round your diagnosis before trying to blow your brains on the inevitable overload of information available to you
Hi my names David and I was diagnosed with Parkinsons a month ago and to be honest I’m a bit scared. I’m 65 and my only physical symptom at the moment is a slight tremor. Since been diagnosed ihave had an MRI and at the moment am on one tablet but to be honest I feel very alone since been diagnosed my consultation with my specialist is not till August and I’m worried that I’m not been officially diagnosed till then.
Is this normal or am I just paranoid.
You are most definitely not alone in your feelings, as you will soon learn from our amazing Forum community here. Please take advantage of the resources on our website at Parkinsons.org.uk and feel welcome to use our helpline at 0808 800 0303.
We hope you will find comfort and knowledge here, and enjoy your time among this wonderful group of PWP, carers, and family. And be sure to reach out to us if we can be of any assistance.
All our best,
First thing to say, we may not physically be with you but here on the forum no-one is on their own, including you. Nothing wrong with feeling scared or any other of the range of emotions that may overwhelm you so soon after diagnosis. The advice everyone gives to newly diagnosed, and I would say exactly the same is give yourself time to get used to the diagnosis, nothing immediately changes. It is such big news to most and indeed shocking to many, but then its almost an anticlimax when nothing seems to happen very quickly. It does take time to get things sorted out and since Parkinson’s is most definitely is not a one size fits all, it can take time to find what suits you. Jason has given you some useful starting points because you do need information but please don’t go mad and read everything you can get hold of; you run the risk of information overload and end up tying yourself in knots. Take time to decide what your most pressing questions are now and concentrate on those.
In the time until your appointment I would suggest you note down any questions you may wish to ask, memory can desert you at the crucial time, and also anything different you may notice including changes in mood etc not just physically - these may help your medical team build a more accurate picture.
The early days can be difficult but you will get come through that, things will become more settled and though I can’t deny it’s not challenging at times it is possible to have a good quality of life with Parkinson’s in tow. Take care and let us know how you’re getting on.