Newly diagnosed feeling scared a

a1911

Hi

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.

Thanks
Annabella :wave:

Hi @Annabella1911 :wave:

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. :grinning:

1 Like

Hi Annabella

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