Spotlight YOPD

We’ve launched a brand new website on this World Parkinsons Awareness Day! Check out our wall of fame and why not upload your pic if you’ve got YOPD? #parkinsonsawarenessday spotlightyopd.org/wall-of-fame/

Young Onset Parkinson’s, joy, kindness and gratitude. It’s not easy at the moment. So here’s my thoughts on choosing joy and gratitude when facing a currently incurable disease and how we should treat all people. This isn’t a pity party post. Nor is it one asking for advice. It’s a genuinely to highlight the syndrome. A progressive and degenerative one that is in many ways, a brutal journey. It’s also to share what I’ve learned about how to deal with the tough times. For me, the outward facing symptoms aren’t the worst. The weird walk, effect on voice, tremors, slow movement, etc aren’t pleasant, but for me they aren’t the worst things. It’s the hidden ones. The symptoms no one sees that you wrestle with daily or periodically. From bladder and bowel issues, struggles with swallowing, fatigue, insomnia, severe apathy and anxiety. All of these unseen by people but are very, very real. After an intense period of travel and quite high demand, combined with grief and a virus, I feel basically done in. My natural optimism is replaced by a deep apathy that can be so severe it’s as if you don’t exist. Totally numbing. I also get something that was previously alien to me. Anxiety - a clinical symptom of PD due to the disruption to pathways in our brains. You know it will pass, and you know this isn’t you but the disease. However no matter how much you tell yourself this, it’s tough. Brutally tough. I’ve learned that you can’t think or pray your way out of it. You have to make conscious choices. Read on. The ongoing depletion of dopamine neurons has a catastrophic effect on people with PD. In my case the very rare young onset variety, typically comes with more dystonia (persistent cramp) depression and dyskinesia (involuntary movements). When I get like this it’s hard to smile. Not just due to the face masking (rigid face muscles that make you look angry or moody) but due to the fact that nothing really feels good. In fact, due to the lack of dopamine, you get very little reward hits due to the lack of the hormone that gives you them. So even good things feel neutral. So what do I do? I have to make conscious choices to be joyful and to choose gratitude. When you do this by disciplined choice gradually things change. See 1 thess 5:16-18. I also have to rest. This condition doesn’t make life easy for family, work colleagues and friends either. I’m grateful for those that understand and give me extra grace in these times. I’ll never throw the towel in, that’s not my style. Sometimes though in order to replenish, I need to go dark. If I go quiet, or am slow to reply, now you know why. I’m not being rude or slack, I’m simply dealing with the fight of my life. Usually it only takes a day or so to pull out of the nose dive. Finally, here’s my advice to us all, including me when dealing with people. Be kind. Give the benefit of the doubt. Believe the best. You don’t know what someone is going through. Hasta la vista!

Thanks @FranceParkinson for having me to talk #personalised #nutrition for PD

@SpotlightYOPD …. Yay!

A message from our CEO @plantsbloke to the Prime Minister and @UKLabour as they start to govern. “The health of a society can be measured by the way it treats the most vulnerable…” #parkinsons #yopd #election #disability

Please spread the word. As one of the signatories on behalf of @SpotlightYOPD and as someone with #parkinsons it’s something I’m quite passionate about.

So good to meet up with Emma from @fight_pd this afternoon in Melbourne. Although I’m pretty tired from 2 weeks of delivering talks every day and travelling loads it’s left me buzzing with ideas. They’re doing some great stuff!! Much to learn as I lead @SpotlightYOPD

I was also told, because I could hold a walking stick that I had a good grip!? Ignoring the fact I sometimes need a stick and sometimes (as I explained) I have a very poor grip and sore/stiff hands. #pip #dwp #parkinsons youtu.be/NbwQ1yk8TUs?si…

“The more we talk about those hidden symptoms, the better it will be for people.” -@plantsbloke Some people find it useful to talk to others who understand how they feel as they've been in a similar situation. Learn more 👉 bit.ly/3UV0SbK #MentalHealthAwarenessWeek

New on our website. A letter our CEO was a co signatory of on behalf of Spotlight YOPD to the Prime Minister and his response. spotlightyopd.org/letter-from-th… #advocacy #parkinsons

Our CEO has just had another meeting in Westminster. This time with the DWP to discuss pip and other matters relating to YOPD.

New on the podcast. Why Spotlight YOPD? Please share around. It’s available on most podcast platforms. You can also subscribe so you don’t miss an episode. Please also leave us a review (especially if you like it!!) #podcast #parkinsons buzzsprout.com/1883237/149328…

Some great content for those newly diagnosed with Parkinson’s on our new website spotlightyopd.org/coping-with-a-…

A great day!

Have you checked out our new website? Join our wall of fame. Check out content for those newly diagnosed and so much more. Sign up for updates! spotlightyopd.org

The latest edition of our podcast all about young onset Parkinson’s is out in which we chat with @kernowpdnurse our resident PD nurse voice of reason! buzzsprout.com/1883237/148641…

What a great day!

On World Parkinson’s Day we support the @moversand6 Parky Charter with the petition supported by @ParkinsonsUK @CureParkinsonsT @SpotlightYOPD More money on research & better support for pwp

Our latest podcast episode is out! buzzsprout.com/1883237

Lost count @RoseDon79544976 !Day 1 done, though - it you fancy a laugh, full video on Instagram #parkinsons #yopd #parkinsonsawarenessmonth I sound and look ridiculous! But had #DBS brain surgery in January and don't care - am glad to be alive! Please share xx