“Death and Dying and Parkinson’s” – Webinar Notes

“Death and Dying and Parkinson’s” – Webinar Notes

“Death and Dying and Parkinson’s” is a webinar hosted in mid-February by the Davis Phinney Foundation (DPF). The speakers were DPF YOPD (Young Onset Parkinson’s Disease) Council members. They addressed the importance of talking about death early so you can live your fullest life. Though the speakers are all coping with Young Onset PD, we are sharing our notes with a broader audience as the webinar is relevant for us all. 

The speakers also mentioned different mental health professionals to see. They introduced the benefits of taking parts in death cafes, which are meetings in intimate settings to discuss and process death. 

For more information on the YOPD Council webinar series please see this DPF webpage.

The webinar can be found on the DPF website.

Please see below for notes on the webinar.


– Joëlle Kuehn

“Death and Dying and Parkinson’s” – Webinar Notes

Speakers: YOPD Council (see list below) 

Webinar Host:  Davis Phinney Foundation YOPD Council 

Webinar Date: February 18, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

The speakers (all members of the YOPD Council) are: 

  • Kat Hill: Davis Phinney Foundation Ambassador
  • Gaynor Edwards:  founder of Spotlight YOPD
  • Heather Kennedy:  member of the YOPD Women’s Council
  • Erin Michaels: Davis Phinney Foundation Ambassador
  • Kevin Kwok is on the board of directors of the Davis Phinney Foundation 

Mel Dizon was the host and is the Director of Education & Research at the Davis Phinney Foundation.

More and more people are dying in hospitals and nursing homes versus at home: 

  • Having the conversation now instead of at the end stage helps make the end stage less gloomy because you are more prepared 
  • It is a very difficult discussion to have but is important topic to have early
  • There will be a greater sense of peace to those passing because they feel like their wishes will be honored. 
  • If people have ideas of what they want or don’t want done at the end of their life it is imperative that they write it down and get it documented
    • Power of attorney for medical decision
    • There are legal documents that can be shown to providers to advocate for the people you love 
  • When you are first diagnosed we are conditioned to think we aren’t going to live as long or have as good of a quality of life but if you look at it in a different perspective, but the good thing is we have to think about it early and have more ownership of our destiny
  • Most people do not have the conversations because its hard and they don’t need to, but now they do need to 
  • The trigger for a lot of people with Young Onset Parkinson’s is the death of a loved one for them to start thinking about their own wishes, because when you are young you don’t want to think about
  • Having a conversation about the end of life isn’t a defeat in life. If anything you want to live life more fully and having this conversation allows you freedom to liberate yourself to say “I will fight to the very end but when it’s time I want to go with dignity”
  • Timing is important: Having the conversation right when someone is first diagnosed is too early because they are processing the diagnosis, but after a while it is important to discuss it
  • You want to give them the most dignified exit in life, live it fully till the end
  • “Don’t fear death, fear not living well”
  • “You live longer only when you stop trying to live longer”
  • If you have specifics such as whether you do want a DNR (do not resuscitate) or not, having conversations can help figure out if that is what you want or not.  Different countries have different regulations and paperwork, it is good to be aware of what documents are needed.
  • If you address death, you are free to get on with life – deal with it and get on with it every day
  • There are documents to help you process it, not all are legally binding and can be changed verbally
    • Think of who would be the people responsible for you and will make the decisions and have open conversations with them with the documents to ensure you get what you want
    • Especially important if you aren’t sure the people who will do it may not align with how you on what you want 
  • Knowing the dying person has even just a little bit of control can be very reassuring. 

Specifically PD and death:

  • Difficult because you can feel your body changing from day-to-day and can feel the disease through aches and pain and things are more challenging than they used to be
  • You can feel it affecting your body so it is on your mind 
  • “I have a new tick/pain, does that mean I’m progressing? Should I be scared? Is it medication” etc
  • Your mind can be your worst enemy when you notice you disease starting to progress
    • “Am I advancing faster than I anticipated? Etc”
    • Have to learn to stop the mental mind game
    • You can focus on what’s wrong or what is not working or you can pick yourself up and realize that it might or might not be the disease
  • A lot of it comes down to choice, where you put your mind
  • A life is happening while you are busy worrying about something else
  • We have an opportunity to reflect grief and loss with having a progressive disease because of things you cannot do anymore that is incremental as the body’s don’t work the way they used to
    • But being stuck in grief can mean losing out on living
    • You have a choice after reflecting to move on from there and come to the living part of life
  • Discussing what your desires are may get easier if you choose to live in the moment 
  • Having a diagnosis gives you the gift of being intentional about realizing how precious life is and your loved ones are and making the most of it

Death cafes: (deathcafe.com)

  • Guided not for profit meeting that you organize in a community in a personal and private space
  • Talk about and process a finite life 
  • A place where death can be spoken of and wouldn’t be told “get over it”
  • A place to bring up uncomfortable topics like grief and death
  • Community of trusted souls and talk about experience with death because then you have a greater purpose to live longer 
  • Can be a great tool to get comfortable with the language and talking about it but also to learn about purpose and how you want your own end of life to look life
  • Hearing others’ experience

Can be good to see a palliative care neurologist:

  • Not about end of life anymore
  • More about quality of life
  • Things we might want to think about as we are living 
  • Can help us navigate and define how we want to live and life fully
  • Team approach of a continuation of care
  • Not the same as hospice

Mental health specialists can be useful to begin thinking about these things and process emotions. It is best to see them sooner rather than later. 

Hearing is one of the last things to go, and it is important to tell them “it’s ok, you don’t have to keep fighting, we’ll take care of everything, go when you need to go.” Try to say what you would want someone to say to you.