Dear newly diagnosed me…

(things I wish someone had said to me)

This came to me from a fellow blogger, Karl Robb, who goes by “A soft voice in a noisy world”. Well worth a visit. He shared a request as below with those of us that follow him and I thought I would share and give others the opportunity to respond. Everything you need to know about this is available by checking out the link below.

“I’m sharing an important opportunity from my YOPD friend, fellow advocate, and Davis Phinney Ambassador, Michelle Lane. Michelle and Shannon Coates are asking people diagnosed with Parkinson’s to “support and inspire” others in the Parkinson’s disease community by writing a “Dear newly diagnosed me” letter and submitting the letter to Shannon at scoates@patientstudyconnect.com by 10 August 2026. There is more information on their site. Pop in and have a look.

Below is my effort…

Dear newly diagnosed me,

Things I wish someone had told me!

• This is huge! It will take time to process. Ask questions about the diagnosis, how can they tell? Sometimes the ‘experts’ gloss over things and send you on your way. I bet you sat there or out in your car and couldn’t remember a fraction of what was said, just the feelings that came with it.
• Push for the information you need. Are there websites or organisations you can turn to for support?
• I hope you had someone with you. With the stress and emotion of the appointment and a confirmed diagnosis, you may remember little of use to you. You will likely just feel and not process! Try to take someone with you to appointments like this if you can!
• Start a journal to write down your thoughts and feelings. Don’t try to bury them, they won’t stay suppressed for long and then you just might explode.
• Look into podcasts and blogs from people with Parkinson’s and those that support them. Check out Michael J Fox Foundation. There are lots of stories of people still living amazing lives. This one’s a good one…www.parkiesandme.com
• Tell people sooner rather than later. This is hard enough to deal with, especially in the beginning. Adding the extra stress of trying to hide your symptoms and your condition is something you definitely don’t need.
• Join a support group early so you can start building a relationship and trust so you know who you can talk to down the track if you need to. You will need support. Go find it. I don’t mean ‘specialists’ but find your tribe. That might be made up of good friends who will do their best to understand and support you, or could be a ‘Support Group’ of others with the condition.
• Look at your priorities in life. Is it important to you to accumulate ‘things’ or would you rather travel? If you’ve always thought ‘One day I want to…”. Do it now! Spend time with family, make more time for children or grandchildren. Children often won’t remember a single thing you bought them, but will remember how you made them feel special and the fun and memories you gave them. Go out and make memories.
• Don’t ask ‘How much time do I have?’ None of us know that, Parkinson’s or no Parkinson’s. There is no value in that question. Some people might only have a short amount of time left, but they may have been undiagnosed for 10+ years. There are so many variables. It could be that something other than Parkinson’s gets you in the end.
• If you are getting near to retirement and can afford it, retire now! Travel, have fun, do social stuff, make new friends, try new hobbies, build your social network. If you’re not near retirement age, but would just like not to work – especially if you don’t enjoy your work – if you can afford it, quit!
• Try not to focus on the things you can’t do, but celebrate the things you can and do more of them!
• Try and get rid of as much stress as you can. Stress is not good for a person with Parkinson’s. Heck, it’s not that good for anyone!
• Get out there and do things that bring you joy!
• Remember, you are still you!