Seven things to focus on as you navigate the early days of Parkinson’s

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Being diagnozed with PD is a huge shock. To try to ease the journey I have put together a guide of 7 things to focus on as you navigate the early days of PD.

This post is taken from Ben Lazarus. Taking charge of our own diagnosis and taking positive steps from the outset is super important. Ben is a partner in one of the big four global consulting firms and has developed based on his extensive consulting experience and his own journey with YOPD this fantastic tool. See original post on Ben’s website here.

Pie chart of the PD journey
Pie chart of the PD journey

The ASSERTS2 model is one I have put together to consolidate the advice I have received which may help someone starting out on the PD journey.

Being diagnozed with PD is a huge shock to the system and there is no way around it.

But although the information out there is confusing and sometimes inconsistent there are lots of people and resources available but it is overwhelming.

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.

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 tool for diagnosis but for helping you react to it and maximize your response to it.

More detail will be added but below is a summary of the key messages.

Attitude

  • A glass half full (as positive as possible) but realistic attitude is the key – it is not easy, it requires transition and stamina and there will be ups and downs but you are not alone and there are ways of coping with it
  • Life will change – each in a different way – but finding the way to cope with change is critical – putting your head in the sand won’t help long term

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
  • Think carefully about who you want to tell, how and when. There is no perfect answer but consider it carefully for you and  them
  • Involve your caregivers actively
  • Not everyone will always be 100% supportive and you will experience challenges (whether a boss or friend) – steeling yourself for this is important

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 need to – make this a priority
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