A guide for newly diagnosed - feedback please

[blazyb]

Being diagnosed with PD is a huge shock to the system and there is no way around it. Although the information out there is confusing and sometimes inconsistent there are lots of people and resources available but it is overwhelming. This was my experience anyway!

To try to ease the journey I have put together a guide – as I see it – of 7 things to focus on as you navigate the early days of PD. In the buildup to World Parkinson's Day I am providing this as my limited contribution to hopefully someone struggling to adjust.

I have called it ASSERTS2 because at the end of the day you need to be active and drive the process, but there is plenty of support It is not a clinical guide and I don't pretend it to be comprehensive and would appreciate feedback of course on it. I will adjust accordingly or delete it if I find something better. I hope in some small way it can help people think through how to get their gameplan together.

If you find it useful please share it and pass it on to those who could further share it

fightingparkinsonss.com/202...

Attitude

•A glass half full (as positive as possible) is the key – it is not easy, it requires stamina and there will be ups and downs but you are not alone and there are ways of coping with it

Specialist

•You need to find an approachable and experienced specialist – a movement disorder specialist/neurologist expert on PD who can put the right medication into place

Support

•Don’t fight this on your own! Find other people and share experiences

•Involve your caregivers actively

Exercise

•The key!!! Keep your body and brain active – whether that is walking, swimming or running, whether yoga, tai chi, dance or boxing. It is absolutely critical

•Keep your brain active – it is a critical muscle – work is important

Resources

•Find the resources available to you in your region (rehab, physio classes) – they exist but you may have to hunt for them

•Start planning to the extent possible for your financial future which will probably look a little different to how you saw it before

Treatment

•Start using the available treatments such as medication

•Take good advice but speak to the right people because everyone has a different idea and it can be confusing

•Keep it under close watch and be prepared to react to changes as the disease progresses – change is important but each change takes time

Stress and Sleep

•For me stress and a lack of sleep are the biggest magnifiers of PD – find ways to destress and sleep as much as you can

[Coletteflint]

Absolutely spot on.

[blazyb in reply to Coletteflint]

thank you!

[staceysack]

This is fantastic!

[blazyb in reply to staceysack]

Thank you

[pdpatient]

Nice

[PalmSprings]

This is nicely done!

[LAJ12345]

very good. I love the way it spells a word!

Sleep- I would say get enough sleep rather than as much as you can because I think too much sleep may not be so good either.

[blazyb in reply to LAJ12345]

Very good point thank you

[Gioc]

I will be friendly and polemical just to express my opinion on the level of difficulty that Parkinson's disease presents.

Parkinson's is an unstoppable neurodegenerative disease that, at each step downhill, shows symptoms of exponential severity.

Your list is quite comprehensive, but the "solutions" are of inadequate intensity, essentially a lower parody of what is necessary just to slow down the decline.

However, it is a good starting point and a good selection of things that are important from those that are not, which is not insignificant.

This is just my modest opinion as a person with Parkinson's, since you asked for feedback, but here we are on Cure Parkinson's HU, there is no middle ground.🤷

Greetings from Italy

Magnolia soulangeana

[blazyb in reply to Gioc]

Thank you for the feedback. It is much appreciated and I will take it on board.

[DachshundFan]

I recommend a section on how everyone with PD has their own unique set of problems. I read a string on Rytary, failing to work in the morning for some people, evening failures for some, and no failures for others. It could be diet or different reactions.

Not sleeping is a bad one. I have had that for about a year.

There are lots of changes coming. I'm just getting started, and I was diagnosed over a decade ago, and I'm looking hard at DBS.

Cheers!