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Ageing. Parkinson’s. Sense of belonging. Society. …at home…

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Useful insight

This post has been formed on the grounds of a loved one suffering from moderate Parkinson’s Disease (diagnosed 8 years ago with Parkinsonism), who spends most of his day without the presence of a carer and has (had to) become mostly independent through self-observation and self-management. Some of the biggest challenges faced is the management of panic attacks (without an official depression level diagnosis), tremor (from a psychophysical viewpoint) and stuttering (leading to decreased confidence and self-anger, further inducing self-isolation tendencies) in a decreasing order of importance.

He says: “The initial occurrences of panic attacks and tremor when I was on my own were a traumatic experience, leading to a sense of despair and ultimately even self-destructive thoughts. It would have been much different if someone from my support network was there at that time. I was lucky to be strong enough at the moment, but someone else, might had not been”. When we reflected on how his situation has changed with time, he responded: “Everyone has a good word to say, but no one knows what you are going through, at the end it is only you who can help yourself. Even other patients see things differently”. His style of expression seemed to me expressive, yet acceptive of social disintegration. “What helped me improve and allowed me to cope better with time was a combination of having a sense of connection and support with my family and neurologist, a less stressful life (post-retirement) and the prescribed dopamine inducing drugs. “Yet, I still face many PD-associated lows that I know I have to deal with”.

Looking at the issue from an integrative, human-whole approach, it seems like while his drug dosage has been helpful in symptom alleviation and may continue to do so, a big part of the symptomatology problem tackling could (?) be found in a combination of:

Initiating a meaningful connection with people that fall under the “closed network” definition and that display some of the following behavioral traits: i. inspire trustworthy attitude, ii. will not engage in judgmental or dictating behavior, iii. Remain genuine in their attitude, iv. Act as good listeners.

Detecting early physiology/ pathology/ phenomenology leading to escalated physio pathological symptoms like tremor and panic attacks. "Closed network" social interacton may often  reduce the intensity of such symptoms.

Mood tracking and automated induction of counteracting or boosting activities.

A Proposal?

Could the solution be bound to creating a (virtual?) environment and integrative framework that monitors the patient’s neuropsychological activity and that can automatically induce counter-acting “natural” activities. For example, an automated call to a loved one, a (sense of) exposure to nature, music of appropriate vibration, or a device-implanted injection of dopamine, once certain low moods or symptoms (or associated daily activity: e.g. prolonged sitting in the couch with no significant movement) start emerging could really engage in the patients suggested ways of improving their quality of life. An important scientific consideration for further research could be to identify from a cerebral and neurological viewpoint the phasic instances in the brain that are associated to such symptomatology and the ultimate possibility of detecting and counteracting them with a safe time gap before symptomatic appearance. While different patients may demonstrate different characteristics, it might be interesting to explore the outlet of Artificial Intelligence as an attempt to detect patterns and ideally correlate them between so far non-associated issues (e.g. music time exposure with dopamine dosage or deficiencies) using Machine Learning (?) methods. Could such approach aim to focus on the patients in an integrative manner and his or her quality of life improvement.

Finally, within the context of sense of social isolation experienced by older patients, ageing populations and the stigma associated amongst neuropsychological disorders, I find interesting the overall societal characteristics that induce the sense of isolation in PD patients and how these relate to certain behavioral traits of communities and patient themselves. A historical assessment of the cultural traits and events that have formed those in society, as a whole, becomes interesting and meaningful.

This is purely my experiential, intuitional and readings-based approach. I would like to listen to different opinions and insights, as well as people who would be interested in such topic. A part of this text is in line with Chiara Scarampi’s earlier post.

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Georgie Cade Jan 4, 2021

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Miroslava Katsur Jan 10, 2021

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Miroslava Katsur Jan 10, 2021

Hi Adam! Thank you for providing an insight into the life of the person with Parkinson's disease and suggesting ideas of what can be done to help such people to cope with life better. Your idea is complex and innovative, and may help to some subset of people with Parkinson's disease potentially. Of course, such idea first needs to be discussed with the actual patients to find out if it is something what can benefit them. It helps for some when another person can read their mood and help them to feel better before things get worse. However, some people may feel, perhaps, observed and experimented on. Therefore, if such idea is trialled, we need to ensure that the patients' anonymity is preserved.

The idea of counteracting some bad emotional states can benefit not just people with Parkinson's, but people with other conditions which affect mood. I personally have a set of ways of how to de-stress: talk to loved ones, listen to music, watch some videos, etc. So, if I am stressed and technology recognises that before I do and provides me with the solution, that could make my life easier (at least, at home). Yet, sometimes I have no time to relax or this ways of destressing won't help me. So, I think it would be best if "Alexa" could ask me: "do you want to do this " before actually initiating a call/turning on music/etc.

I wonder how technology would be tracking the neuropsychological activity. I guess one way to do that is to detect stress hormone levels in blood and heart rate - that's a very simple one to trial, until more complicated technologies are available.

You also suggested dopamine shots. It seems to me that this can be trickier to achieve. The regimen of dopamine intake should be established by medical personnel and only they can evaluate whether the dosage can be increased or not. Dopamine in some quantities can be toxic. There is a hypothesis that dopamine administration can cause neurotoxicity even in early Parkinson’s disease. Of course, machine learning can help in the future, but it will take ye ars to fine-tune it.

There is already a technology known as deep brain stimulation which is used by people with advanced Parkinson's. It detects and reduces harmful nerve cell activity in the patients, which results in reducing tremor or "freezing in place". This device helps to reduce the amount of medication needed which eliminate side-effects they inadvertently bring. Here you can see a very impressive demonstration of this technology by Andrew Johnson:

Adam, what do you think about what I mentioned here?

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