The legal side of PD

I like to live in the now, avoiding fretting about the future and idealizing the past.  But I do need to make plans.

What medical care do I want (or not want) if I'm terminal, seriously ill, or in a coma?  (Here's where you want a Living Will/Advanced Directive - I found Five Wishes to be particularly good for helping me think through what I would like, and it's legal throughout the US.)

What if I become unable to direct my medical care?  My mom, who had PD, developed dementia.  That's just one of many scenarios.  (Here's where you need to name a Health Care Representative.  In some states, that's part of the Living Will.)

What if I can't direct my financial affairs?  (Here's where you need a Power of Attorney, to give somebody that you've chosen the authority to manage your financial affairs.)

How can I make handing over my assets easier on my family?  Having  a will means that I can control where my money goes.  Avoiding probate is primarily for avoiding all the time it takes.  Wouldn't it be great that my family could put the house on the market immediately, for example, and not have to wait a year?   (Here's where you need a Will, and maybe a Living Trust)

What about brain or other organ donation?   (You can arrange for brain donation - for research - in advance, and can often include other organ donations on your driver's license)

What kind of memorial service/funeral do you want?  If you want your ashes scattered, where?  (Five Wishes addresses this, and you can also arrange for and pay for everything in advance.)

What are your userids and passwords so that 1) someone can take over your financial affairs when necessary, and 2) so somebody can close your social media accounts if you can't be on them any more? (This means maintaining a list, and letting key people know where it is.)

Recently, my husband and I sat down with a competent estate-planning/elder law attorney to talk about what we needed.  It cost us a chunk of change, but 1) now my affairs are set up the way I want them to be, and 2) it is a huge relief.  Our wishes have been made clear.  Our kids have a knowledgeable firm to go to for help if they need it.  In addition, our assets are available to us now, but can easily pass to our kids when we are both gone.

This is not trivial.  My condition means that I can fall and hit my head, develop dementia, have delusions,  or become unable to communicate my wishes.  I want my wishes to be respected, so I need to 1) decide what they are, and 2) identify who can respect them, and 3) give them the authority to act.

I recommend this book, Estate Planning for People with a Chronic Condition or Disability.  But this isn't enough:  surfing the web for "free" tools, especially when the law varies from state to state, is not the ideal approach. Finding the right attorney is much better, in my opinion; start asking around.

Images from Pixaby, Five Wishes, Amazon.

Donating your brain for research

Since there's a narrow window after you die to donate your brain, this is something you (or your family) will ideally do in advance.  Um.  Why would you want to?

Well, to assist research into PD and related conditions.  And so your family (and your doctor) will know what your actual diagnosis is (nobody knows for sure until they look at your brain microscopically, and that can't be done while you're alive).  I won't be able to benefit from this, but others with PD will, and my family is likely to benefit as well.

Here is a great Ted Talk that explains more:

The Brain Donor Project was set up to encourage brain donation in association with the US National Institute of Health's https://neurobiobank.nih.gov/.  If you asked the NeuroBiobank about brain donation, they will refer you to the Brain Donor Project (which is run by volunteers, so please be patient).

So here's how you do it.  https://braindonorproject.org/   I filled out the contact form and they referred me to the Brain Bank at Harvard, which is just a few hours away from where I live.  This is important because the brain needs to be donated and preserved within less than 24 hours of death; each individual bank has their own requirements and some have a much smaller window of time when they will accept donation.

I went on the Brain Bank's website, found their form, indicated my diagnosis on the form, along with my intent to donate my brain.  Looking at their website, they commit to determining correct diagnosis (which I want for my family), and preserve the brain so that it can be used by hundreds of researchers.  This form just indicates my intent (and gave me their 24 hour phone number.)  Each brain bank will be a bit different. When my disease gets more advanced, I (or my Health Care Representative) will contact them to make more specific arrangements.

This gets a bit grizzly, now, so skip this paragraph if you're squeamish.  Ideally, when you are close to death, your family/hospice workers/etc. notifies the brain bank.  When you actually die, the brain bank needs to be notified immediately (that's why the 24 hour phone) so they can swing into action:  notify the neuropathologist who will collect the brain at the hospital or funeral home, notify the hospital/funeral home of need to remove brain, have the neuropathologist collect the brain and send it pronto to the brain bank, where the brain bank preserves the brain and begins work on diagnosis.  Clearly, there are legal forms needed, which is why doing this ahead of time - if possible - is so important.

Here are some Frequently Asked Questions:  https://braindonorproject.org/faq/  For instance, yes, you can still have an open casket if you'd like one.  No, your driver's license organ donor form is not enough (that's for a different kind of organ donation.)  No, this does not substitute for a funeral/memorial service/cremation/burial for a loved one.

This is part of my preparing-for-the-future.  Long-term, I hope to be part of the solution.