Choices are limited but yet endless and bewildering

It is strange that I now notice the more I write, the more I think about the huge array of issues those involved in the world of Parkinson’s have to deal with. One of them is perhaps one of the most interesting and challenging ironies – at least I think so – the array of choice!

A disease with no cure and no known cause still presents us with literally hundreds of decisions and choices. We are usually completely overwhelmed, underprepared, and unqualified for these decisions, yet they come to us in very, very rapid succession, in parallel, and often with conflicting impacts. How do we get on top of this?

When diagnosed, we generally know incredibly little about this very complex disease. Being a little inappropriately sarcastic, even the top authorities in the PD space don’t understand either its cause or its cure.

It is made worse by a few things:

Insane language – The words are intimidating, and I still don’t really know them. Imagine being asked if you have Dystonia? Dyskinesia? First, you receive a diagnosis of a brain disease, and then the language used is of a scientific nature.

No single version of the truth – There seem to be so many different ideas, pathways, and options, and no common view of how to tackle the disease. Some go the medicinal route, and within that, the route of Levodopa, and others the route of Agonists (again, the terms really don’t help). Some go the route of supplements and natural remedies. Some go slow, and some go fast. I have learned that there are good reasons for this – PD is an umbrella, and we all have different unique versions, and that is a huge challenge. My route, for example, is very accelerated in some areas (balance, choking, sleep, freezing, shuffling, no smell, bladder issues) and in some areas very slow (cognitive, tremor, etc.).

Time – The clock is ticking, and each form of treatment takes time to prove itself and to deal with side effects. Additionally, the time for actual diagnosis and then the time between meetings with your professional carers is long, and it can take years to get in motion.

Agendas – I hate to say this, but sadly there are some ‘sharks’ out there with ‘magical solutions’ – some are totally genuine and well-meaning, others less so. I came across a number of magic solutions – potion A, xxx stem cell B, vitamin C, treatment D, method E. It is possible I have said no to the thing that will cure me, but I don’t think so. The array is so so wide and all of us lack information and time.

Access to information – There is so much information it seems that some of my neighbors (and I have quoted this time and again) seem to hold advanced PhDs in the topic. I am so grateful for the people who send me information (and this is NOT a request to stop). On the other hand, the democratization of information means it is so incredibly dispersed – it isn’t in one place. A bit like this blog – it is completely hit and miss for most people.

It is, in short, simply overwhelming…..so what to do about it?

A year or so ago, I actually wrote a guide from my perspective on how to first approach PD – I called it ASSERTS2, and I reviewed it tonight, and I basically stand by it (see link).

If you don’t have the energy to read this guide – I don’t know how I had the energy to write it – then I suggest personally the following initial ideas:

A: Try to build yourself – physically and virtually – a circle of trust – a specialist, a fellow patient, a coach or therapist, and share the dilemmas with them and build a plan/strategy/approach to the journey.

B: Start with the basics, don’t agonize over the choice of the basics, pick and focus on getting them routined – some basic fundamentals that are critical in the fight/journey and, to be honest, are worth doing whether or not you even suspect PD.

• Get into shape – stretches, a form of movement-type exercise, and some form of more cardio-type exercise – walking, running, swimming. This is where my comment on ‘don’t agonize’ comes in. Again – choices – do I do running, walking, or swimming? Yoga, Tai Chi, Pilates, or Dance? My personal view – just pick the one you feel most comfortable or least uncomfortable with (and trust me, you may not be okay with any) and just do it and get it into a regular (and I mean regular) routine. This is the key – routine exercise. If you hate swimming like me and know deep down you will never turn up at the pool – don’t go for it despite the many who say otherwise.
• Get into good habits on diet (generally people seem to say Mediterranean-based), although here there are hundreds of views, and I have seen many dieticians who have recommended others.

C: Prioritize – if you listen to everyone and do what everyone says, there will be no money left and no time left for anything else. So you have to learn to prioritize, and for this, your gut, intuition, your lifetime of experiences, and your circle of trust above will help.

D: Live life in uncertainty – this, for many people, is impossible – they have to research everything they do, and for them, it is so, so hard. As there is no cure and no true knowledge of the cause, it is by definition a world of imperfect data, and you have to start being comfortable operating in that world and learning the muscles of making decisions that are partly scientific and partly intuition/art.

For me personally, it was yoga (which was such a joke to me at first) and walking (every day), getting into a sensible diet, getting into a medical protocol (a good neurologist and starting to get advice on drugs), and some basic therapy activities (physio), and I also selected acupuncture.

However, when the pump (Produadopa/Vyalev) was offered to me in seriousness, I rolled the dice and took the decision to jump on it. In fact, I more than jumped on it. So I am not advocating an average/me-too approach – I am simply suggesting that you pick a plan, team, approach, do the basics well, and then jump on the opportunities that come at you once you have vetted them as being sensible.

E: That is my last point – be prepared to be agile, dynamic, and push for change if and when it comes. I called the model ‘ASSERTS2’ for a reason – you have to lead your treatment and marshall help – you can’t sadly rely on a nameless administrator to do it for you. That is why we need to help each other and discuss/share ideas as patients – knowledge is power (or at least a little control) and we have to set the tone. Is it easy – no and sadly it is not – that is the nature of the beast we are fighting.

The main reason I am writing these blogs, as I keep saying, is a form of personal therapy, a form of addiction, and to use the huge time I have because of no sleep. Proof of this is I have just realized it is 00:03 on 1/1/2025, and I missed the turn of the year, and I am awake having slept 3 hours and been too absorbed to notice the event.

I certainly am not an expert and it does make me wonder why anyone would even think of listening to me….that is a different matter maybe for another day.

Happy New Year – I truly hope and pray that we each find our way and that this doesn’t add more confusion to the mix.

Feel free to reach out – please know you are not alone!… and I am going to try to go to sleep.