The “What would I do” post? Part 3

# # # # Given the broad range of topics covered on the SoPD, I am very regularly asked “what would you do if you were diagnosed with Parkinson’s tomorrow?” As a research scientist I am not comfortable answering this question, but I can see how it is a fair one to ask. I have previously attempted to address it (Click here and here to read those posts), and I point folks who do ask in the direction of those posts. And as new research and more tools become available, I can see some value in revisiting this question. So in today’s post, we will do the 2023 version of “what would I do if I were diagnosed with Parkinson’s tomorrow?”.  # # # #

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Source: BBC

Before starting, I would just like to thank readers for their kind words of support regarding my personal situation (see this previous post to understand what I am talking about).

My ward is now in full time care. But the guardianship order is still not in place which makes things rather problematic.

Source: EducationLawyers

The UK deputyship system seems to have become glacial in its process. I was advised that it would take 4-6 months, but we are now almost 12 months into the wait… and the care home bills are piling up very quickly. The resources to pay the bills are available, but without the deputyship being in place I am powerless to do anything about it.

Very frustrating. And certainly preventable.

And this is probably a good place to start this particular post.

What do you mean?

The first thing I would do if I was diagnosed with Parkinson’s tomorrow, would be to get my affairs in order/updated.

Even before considering all the other actions I have previously discussed (Click here and here to read those posts).

These affairs would include:

1. Planning for my estate and finances (this could include will, durable power of attorney, a living trust).
2. Planning for my future health care (again, durable power of attorney and a living trust).
3. Putting my important papers and copies of legal documents in one place.
4. Providing a record of various accounts and passwords
5. Talking to loved ones and a doctor about advance care planning.
6. Giving permission in advance for a doctor or lawyer to talk with my family as needed.

And I would review these plans regularly (the list above was sourced from this NIH website).

It might seem like a strange place to start, but recent experience has taught me that there are so many small overlooked details that need to be considered. Take for example pets.  Making people aware of the name and address of your veterinarian somewhere in your instructions would be helpful, and communicating with someone about what should happen with the pet if something were to happen is wise. Allowing others to prepare for a potential eventuality would be a kindness.

Another action for couples is to consider is having all bill payments/direct debits under a single shared bank account to prevent the cancellation of any services (power, phone, etc) for loved ones when your bank account gets frozen (my ward unfortunately experienced this).

# EDITOR’S NOTE: One unforeseen example of not having instructions in place – after my ward went into a care home, a swarm of bees decided to move in – just under the side boarding of the house (the image below is with the side boarding removed): Pretty epic, huh? This remarkable swarm was estimated at 20,000+ drones! Even more remarkable was the cost of removal. The local bee association were fantastic, and safely took the bees to a new home (wonderful people, deeply passionate about bees – I learnt a lot!)  But without any instructions regarding the maintenance of my ward’s property, it was a costly business (…for guess who). And on top of this, I am not entitled to any future ownership of the property (by English law) so I feel like I am walking on thin ice any time I need to do anything to the property. #

I appreciate that this is a depressing topic to start off with, one that most people really don’t want to think about, but a little bit of preparation will solve a lot of problems for loved one going forward. It is also something that one can be proactive and do something about, which may be empowering when dealing with a bigger situation where one feels like they have no control.

And this leads us nicely into the next thing I would do if I was diagnosed with Parkinson’s tomorrow: I would design my life around my new situation.

And I can give you a very real world example of this: A few year back I became a patient myself. I was diagnosed with a heart condition. One of the ‘don’t bother with a retirement plan‘ types of heart conditions (and I appreciate that this is continuing a rather depressing theme, but trust me I am actually going somewhere positive with this).

Understand that I’m not by any means comparing my situation to PD.

But the diagnosis did give me a lot of clarity in my life. I now only focus on things I can do something about, rather than wasting my time on things I can’t. And I really don’t stress the other stuff.

I have begun to design my life around what I want.

But what do you mean by “design my life”?

The cardiologist said I should exercise more, but not to excess. Rather, I should just elevate your heart rate to a point where you can still maintain a conversation.

I wasn’t a big fan of exercise, but I figured I’d had better follow the good doctor’s advice. I began by taking 40 minute walks up and down some of the gentle hills surrounding our home. I’d walk 4 or 5 hills each morning.

Sounds like a hoot, right? Well, I would plug a podcast or audiobook (all the classics are freely available from Librivox) into my ear and off I would go – every morning. If nothing else it was a nice (invigorating) way to start the day.

Gradually, over time, I came to love it. It very quickly became my ‘me time’.

The problem in the UK, however, is that the weather is not always accommodating of outdoor activities, and so we adapt: I bought a recumbent exercise bike for £20 off a second hand website and started cycling for 40 minutes every morning instead.

And my ‘me time’ became even better! On the bike I could do whatever I wanted – from listening to an audiobook to watching a documentary on Youtube. And by making it my time, I came to love my morning cycles and even exercising! In fact, I now have a very hard time starting the day without it (once a week I do give my body a rest day).

And the research indicating that exercise is good for Parkinson’s is certainly growing. For example, Prof Bas Bloem and colleagues in the Netherlands conducted a clinical study, which demonstrated that exercising for 30–45 min (30 min aerobic plus 15 min warming up and cooling down), three times per week for 6 months significantly slowed the progression of Parkinson’s symptoms:

Title: Effectiveness of home-based and remotely supervised aerobic exercise in Parkinson’s disease: a double-blind, randomised controlled trial
Authors: van der Kolk NM, de Vries NM, Kessels RPC, Joosten H, Zwinderman AH, Post B, Bloem BR
Journal: Lancet Neurology, September 11th
PMID: 31521532  (Click here to read a previous SoPD post about this research).

This might not sound very straightforward or very appealing for a person living with a movement disorder like Parkinson’s, but the same basic principle applies: Design your life around what you want/need.

I have a friend who has PD, who recently stepped back from the rat race and focused on better structuring their life around himself. Rather than a long train commute into the big city, he now cycles a short distance to a less stressful job in his town. He doesn’t worry about what he can’t do – just focuses his attention on what he can do.

Sometimes in life, we get stuck in a pattern (without even realizing it) and it takes something that really sucks to wake us up and to adjust.

And the adjustments can be very small changes, but they can have a big impact on making life happier.

A third thing I would do if I was diagnosed with Parkinson’s tomorrow: Get involved with the research.

I view this particular activity in two ways: selfish and selfless

It is selfish because I would be seeking access to the medical experts for me and my condition. Rather than seeing a neurologist once every 12-18 months for a 30 minute check up, by getting involved in different research projects I would have more regular access to the researchers and would be able to ask questions about more recent things I may have noticed about my condition. I can see a lot of value in being close to the action, simply from the stand point of having access to advice and instruction.

And it would be selfless because I can see the greater good in become a statistic in some of the large studies currently being conducted. I would definitely take part in large longitudinal studies like the Michael J Fox Foundation’s Parkinson’s Progression Markers Initiative (PPMI):

And their Fox Insight project:

There are lots of large cohort studies like this around the world – following people with Parkinson’s over time and providing researchers with valuable data for analysis. And most of them involve the volunteer’s data being anonymous.

I would also probably volunteer for a clinical trial of some sort (this is a very personal choice, but I could see myself doing it). I would be selective in which one I volunteer for, and I certainly would go into it expecting some kind of miracle ‘cure’. Rather I would try to view myself as one of the pioneers who will head off to colonize Mars one day. Doing something that could have beneficial outcomes for future generations.

Reminds me of an old Warren Buffett quote:

Source: Tbae

So what does it all mean?

As I said above, I’m not really comfortable with writing these “What would I do” posts. When folks ask “what would you do?”, they are naturally wanting to know which supplements or medications I would consider taking. But the truth is: I don’t know. The jury is still out on all of them. Plus there are currently very few ways of monitoring whether the effect is good or bad.

About 12 months ago, I started intermittent fasting (skipping breakfast and trying to consume everything I need within an 8 hour period).

Source: Womenshealth

It was a move born of curiosity for me rather than any attempt at longevity. Plus the idea worked well with my lifestyle – breakfast was always an activity that slowed down the start of the day for me. But while I have easily adapted to this new way of life, I have no way of determining if it is having any beneficial effects. Maybe it’s putting more pressure on my heart? I do not know. Have I lost weight? Not really. Have I saved money on food? Nope, definitely not. My body just found new ways of cramming more food in, in less time!

Given the inability to monitor outcomes, I restrict any thoughts in these “What would I do” posts to more practical activities. I appreciate that this may not be what some people are looking for, but I will sleep better at night knowing that I haven’t over stepped any ethical lines.

I’m not going to pretend that I can guess what a diagnosis of Parkinson’s would be like, or how I would personally react to it. But I do hope that this website can provide folks with some insights into interesting aspects of the condition, and help to stimulate engagement. And with this particular post, it would be great if readers would prepare for the inevitable (by getting their affairs in order), find the things that make them happy (by designing their lives), and (if they chose to do so) get engaged with Parkinson’s research.

And in the next post, we’ll get back to that research.

 

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Creative Commons Attribution 4.0 International License
You can do whatever you like with it!

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EDITOR’S NOTE: The information provided by the SoPD website is for information and educational purposes only. Under no circumstances should it ever be considered medical or actionable advice. It is provided by research scientists, not medical practitioners. Any actions taken – based on what has been read on the website – are the sole responsibility of the reader. Any actions being contemplated by readers should firstly be discussed with a qualified healthcare professional who is aware of your medical history. While some of the information discussed in this post may cause concern, please speak with your medical physician before attempting any change in an existing treatment regime.

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