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Sunday, November 4, 2018

A Week in the Life of the Michael J. Fox Foundation: Clearing up the Final Details before the Sun Sets

In a week where the Michael J. Fox Foundation was giving $4.4 million to Vanderbilt for research into creating medicines that will help promote effective Parkinson's symptom relief, as well as partnering with Philadelphia's Blackfynn data analysis group for help in crunching their Parkinson's big data numbers, they were also unfortunately in the news for having to settle a lawsuit from a woman whose brother gave his entire life savings to the Michael J. Fox Foundation upon his death in 2017.

In the article, which featured Michael's face in the clickbait picture, the organization, which has raised over $800 million to end the collective nastiness that brings us all together, was forced into a position where said family member wasn't happy with her brother's decision. The woman, Jenny Malkin, felt that her brother wasn't of sound body and mind when he made the decision towards the end of his life, when he was suffering from a 10-year bout with Parkinson's, to adjust the will accordingly. Here, she felt that he wouldn't have left her with nothing if he would have been thinking more clearly.

It's hard to think about what she endured watching her brother suffer, and it's equally hard to comprehend what brought her to the lawyers, but alas, the Michael J. Fox Foundation was forced to confront the no-win situation in a settlement. As the terms were confidential, it's impossible to say and not right to speculate on, but it does bring us to a short mention of taking care of business before things with our day to day lives go too far.

Put simply, a living will is a good thing. It doesn't matter if we don't like thinking about the great beyond or what could happen. The reality is that everyone in the worlds needs a voice for his or her care should said person not be able to speak out for his or her own cause.

What all of us also definitely need is a healthcare power of attorney. At some point, anyone, anywhere, could be faced with a situation where someone needs to step in and make decisions. We need to know who they are, and we need to know that they know what we want.

What we also need is a last will and testament. Our property goes on after we don't. I'm sure almost all of us can think about someone's family problems when it came to emptying out someone's house or divvying up the property. If you don't know one, think George Michael's finale. In situations of domestic partnership, things could get tricky. In a short search, I found some information, though much of it was more than a couple years old. Thus, you definitely want to "have the talk" if things could be affected (the home, the kids, the bank accounts, etc.) when the worst comes.

Many of us are still part of the working Parkinson's community. Our contributions toward family finances are important. Thus, it's important to make sure that all members of the family understand what's there when it hits the fan. Be it insurance policies or assistance and help, the time to cross the bridge is sooner (i.e. now) than later.

Planning for things like disability are essential, too. I've started to talk with Social Security about this. I'm not at a point where I can prove why I can't work at all (thus, i'm ineligible), but it's important to have everything ready when I get worse. Granted, it wasn't fun to talk to the wife about this, but when the rough times come, we do have a few things that the other will need access to if the situations arise.

Additionally, if you're planning to leave everything to an organization, it's probably worth letting people know.

This isn't meant to say that disputes may not arise when these things are stated, but if things are done early in the game, then the resolution will most likely be less contentious when the end comes.

Some people give their art to museums or cash to their college, religion, or cause. For those of us who are suffering through the poop storm of Parkinson's, making sure other people don't have to feel these pains is probably coursing through many of our brains.

If you've never seen Clint Eastwood's Grand Torino, that movie kind of sums up how some final wills can end up. Family or friends may feel entitled to things, but the person who this will is for might feel otherwise.

As I said before, I have no idea what precipitated the lawsuit with the Fox Foundation, but it was. For us who can learn from it, it's a cautious lesson. Plan ahead for what your wishes and needs are, whatever they may be.

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