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Ghostly visitors: Parkinson’s and hallucinations


not this kind of ghost…

not this kind of ghost…

One symptom relatively common in people who suffer from Parkinson’s is hallucinations. My dad has had varying levels of visual/auditory hallucinations for the past couple of years. At some point, he was taking some medication to try and reduce them but I think the side effects were worse. At least for the past year, he has simply managed by evaluating and deciding which things are likely not real and ignoring, not letting things get to the realm of delusion, but now being with him daily I am hearing about them much more frequently and some are definitely freaky.

When he lived near Tulsa and I traveled down to visit and/or care for him, he would sometimes mention the hallucinations, but typically in a way that was clearly designated as “This happened, but no big deal.” The weirdest one included a little girl who came into his room late at night and sat down on the floor to watch TV. He didn’t know who she was or where the thought came from, but didn’t seem bothered at all. While I just imagined horror movie scenes.

Now we’ve had:

  • A mysterious figure banging on the window waking him up at 5AM in the morning. Notably, the window was also part of the hallucination, projected onto the wall where a framed painting was hanging.

  • Our cat Molly came into his bed and cuddled with him at night, when in reality she can’t push his closed door open. Also, I apparently entered the room and pet Molly for a bit, then left the room.

  • For about 45 minutes one night, he had a conversation about accounting with some imagined person in the room. When I later asked him about it, he wasn’t sure what I was referring to but was not at all surprised. (Earlier in his career, he was a CPA and handled books for people/companies).

Now I just kind of use my own signals to decide what reality he is witnessing. It hasn’t been a problem at all, but does kind of keep me on my toes.

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A personal update

Ok, so it’s only been over 4 years since I last posted here, so I figured it would be a good time to provide an update.

In August, I quit my job and started planning for a big life change. We made the decision to move my father, who has been dealing with Parkinson’s disease, into our home so I can care for him. We live in New Hampshire and he was living in Oklahoma. He doesn’t like the cold. Regardless, he’s now adjusting to life in New England (right before winter) and we’re adjusting to life with me being his primary caretaker.

While it is a major change, it was the right time to make it happen. We moved to New Hampshire for my wife’s career and I’ve gone through a few jobs trying to stay active professionally while still supporting her career as primary and keeping the kids happy with their new schools, etc. Overall, the last few years in Hanover have been great.

My father has been in decline for a few years now and he has been living with his sister. She’s been great at adjusting with his health but the past couple years have been more challenging and she has her own life. So we’ve been covering home health care for quite a while as needed, but as the monitoring requirements grew it just didn’t make sense to keep up this system. We looked into alternatives, but the cost is so ridiculous and we weren’t willing to delegate care to organizations. (more on that in a future post)

So after a few months of planning, I drove to Tulsa on Sept 17 (in two days, stopping at my good friends’ home in Dayton halfway) and drove him back up here with all his stuff in a trailer by Sept 23. Lots of driving, but good to get it done.

He’s now been here for almost a month, and I feel the need to post. I have all these random notes and thoughts about this change and I feel like it’s better to get it out. Also, since I’m essentially retired from my online professional life, I feel like I need a creative outlet so I will also be pursuing some side projects here and there. I figure this site will become the home of both my random Parkinson’s care notes as well as some other pursuits. If you decide to read consistently, please let me know why and what part of this is interesting to you!

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Cover letter advice: Don’t be an asshole

We had a person write in inquiring about a position, and I feel the need to share a couple of the statements as good lessons in what not to do.

…from what little I know it would be a fairly smooth transition into your company.

So basically you are telling me you have no ability to research us on your own – we teach web development and yet you are helpless to source data about our company online. Not impressed. Then even worse, with no data you have decided that it would be easy for you to jump right in and add value here. You sound awesome. 

…and I need reassurance your company is stable.

So let me get this straight. You reached out asking if a position is still open, then proceed to doubt us as a worthwhile place of employment? You aren’t sure you want to move in with me, so let’s not even have a first date? 

For those of you presenting yourselves to a company in hopes of an interview: don’t be an asshole. Or better yet, if things like this aren’t common sense to you, go ahead and include so we don’t waste our time.

 

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Don’t fret the Things

Recently I was reminded again that stuff simply doesn’t matter. And by stuff I mean physical items that are just Things. Sure we go about our lives spending money obtaining goods to enjoy our lives, but in the end these are just things that don’t add any points to my imaginary life scorecard.

broken window
Window of our home broken to steal some electronics and make a mess

On Nov 25th, we came home to find a burglary had taken place. My daughter and I entered the garage hesitating, wondering why some boxes were off the shelves and on the floor. At first, I thought our cat somehow got in the garage and moved things around. But something was just… odd. 

We went inside to find a smashed living room window, a ransacked master bedroom, and other randomness. Our shelter had been violated by a stranger, even our underwear drawers investigated for potential piles of money. 

After the police report and forensics process, a friend came over to help board up the window. We had lost some gadgets and video games, but then we discovered that my wife’s engagement ring was also missing. She wears her wedding band but not the engagement ring. It wasn’t really that valuable in terms of money, purchased when in graduate school.

So while the ring had sentimental value, it was still just a thing. More than the material goods, it’s the feeling of violation of privacy that hurts most. The feeling that as a father I wasn’t able to stop a random person from messing with our family’s safe place. 

I previously learned the lesson of not caring about stuff back in Dallas in the 90s. My mom was moving down to Dallas where my dad was living for work, and had everything from our old family home packed into a big U-haul truck. The rain was bad the day our friend drove the truck down, so we parked it in front of the house to wait. The next morning it was gone. Everything on it. A few priceless kimonos she had brought from Japan. My collection of comic books from high school (I used to be an avid collector and had over 1000 issues of various series). Furniture. Jewelry. Artwork (my mother did oil paintings as a hobby). 

I stopped collecting stuff after that. In fact, I moved to Japan for two years which helped me avoid hauling stuff around. It’s much more important to just live. So many unmet necessities in the world, why box up and transport stuff that isn’t being used? Shows like Storage Wars horrify me, seeing that people have so much crap they store it for long periods of time and then lose it due to missed payments. 

Unfortunately, once you have kids, stuff seems to find a way to creep back into life. I do what I can, but it’s tough to be really strict about it. I can remember some of the times when my parents reluctantly allowed me a purchase that didn’t really make sense and I eventually learned how to make better decisions. I’ll keep providing my guidance to them as they learn to deal with peer pressure and marketing.

Really I’m just rambling at this point – no plan or clean conclusion. No complaints or expectations of sympathy. Just felt the need to write. Let’s just end with this: I’m happy my family is safe, and that things are easily fixed and replaced. Stuff doesn’t own me.

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On not burning bridges

I’ve been away for too long, so I decided to return to this blog. I still find it tough to make blogging a habit, so I think I can be considered a yo-yo blogger. Months of activity then nothing, then another burst of posts, then nothing. Hopefully I can stick with it this time around.

As we get closer to the job discussions with our current engineering class at The Iron Yard, I was thinking about one thing I personally like to encourage to everyone: Don’t burn bridges.

I know there are certain situations in which a clean separation is extremely difficult, but I’m referring more to the elective job change. There really is no reason to go out with a bang just for entertainment’s sake. It’s much better to be honest and allow for a proper transition as much as possible. Creating bad blood can come back and haunt you or potentially create a whisper campaign against you that unfairly shuts the door to future opportunities. Why give anyone any doubts about your future potential?

In my case, I think I have a somewhat unusual career history. I have the experience of leaving a company and then returning to it later three separate times in my career. Each time there were different circumstances, but by leaving in a professional manner, the door was open to my return because my relationships were still valued and nobody doubted my word. I always followed through on what I communicated regarding the transition, documenting everything I knew would be needed for the next person in my role.

So that leads me to my latest moment of honesty. Recently my wife resigned from her position at Furman University. After starting her third year here, she has a much better idea of what type of academic environment suits her best and she is applying to a few openings for fall 2015. Since the university hiring process is essentially a yearly cycle, she will fulfill her third year here but by announcing her decision early Furman can move ahead in finding a new professor for next year while she does her own search.

What does this mean for me? Well, number one is that we will be leaving Greenville next summer no matter what. I could hold this close until next year, but that’s not fair – I have already told the owners of The Iron Yard and they are supportive of our move, and hopefully as the company continues to grow I will find a way to contribute in a different role. It also means there is plenty of time to figure out a transition plan, rather than put them in the stressful position of needing to find someone quickly. Because we have 4-month cycles of incoming and graduating students, a sudden personnel change can really throw things off.

So for now, really nothing is changing for me and there is a lot of time before I have any idea what will happen. But like I said above, doing what you can to make sure nobody feels burned is a good strategy both in life and in your career.