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Thursday, 6 March 2025

(58) PD support & self-care: a global snapshot

Worldwide support for PD

Parkinson's Disease (PD) has had a crippling effect on millions of people all over the world, as is evident by the range of organisational support available internationally. According to my recent Google search (Feb/Mar 2025), such support is offered by dozens of countries online and these are listed in random order below. (Indeed, we are not alone!)

🌍🌏🌎

OBSERVATION The PD-support sites listed above are what appeared in a Google search. It's a fair representation of countries that are actively engaged in assisting their citizens. However, some - such as Russia, Ukraine, China, Turkiye and South America - are not transparent online about their approach to supporting their citizens who have PD. Curiously, within each of these country searches, Google also showed published research results with significant numbers of PwP in these five areas! Also, I have not included dormant, PD-support websites that exist online but have been unpopulated for years.
     

Help for me, a PwP

As a Person with Parkinson's Disease (PwP) since 2012, I have been able to identify three main sources of support to whom I have always turned for help. Allow me to share these:

  • Myself ("What should I do?") as I generally trust my instinct;
  • The Internet ("Why/what is happening?") as a broad spectrum source of info and evidence; and
  • Other People (medical specialists, therapists, Parkinson's Support Groups, caregivers, etc.) for their expert advice and care.

According to Michael J. Fox, in the context of PD, "the people living with the conditions are the experts". As a Person with Parkinson's (PwP) and diagnosed in 2013, I agree with his statement. This does not mean that neurologists (I've been diagnosed by three) don't have a role to play in PD management. In my experience, their diagnoses are likely to be based on their experience of medical science, psychology and pharmaceutics, etc. and not necessarily based on listening to the experience of 'the people living with the conditions'. This leads to the focus area of this Blogpost: what is self-care of PD? 


Self-care of Parkinson's: a brief overview of research

The Swedish National Parkinson School

A research project involving PwP, undertaken by Hellqvist et. al., entitled "Self-Management Education for Persons with Parkinson's Disease and their Care Partners..." (2020), examined the types of guidance provided by "healthcare services in order to develop skills to adjust to life with a long-term condition."

It was discovered that "after seven weeks of standard care" offered by those health care professionals there were "improvements regarding health status, constructive attitudes and approaches, and skill and technique acquisition" among the PwP but not among the carers. So, with 'standard care' the Swedish National Parkinson School is able to improve the self-management and health status of PwP. 

They describe self-management as practicing "activities that individuals initiate and perform [to maintain] life, health and well-being." How does this compare to the other perspectives, dear reader?

Parkinson's UK

Since 2013, Parkinson’s UK has been facilitating a self-management programme called A path through Parkinson’s as reported in Parkinson's UK Self-Management Programme Evaluation Report (2017). Together with PwP the programme allowed participants to share experiences and then to unpack "practical and emotional impacts [of PD during] discussion, activity and self-reflection delivered over three or six consecutive weeks, building up to a final session of action planning..."

Many participants experienced the following as some of the general outcomes of this programme: 
  • "feelings of increased confidence, resolve, positivity and control"; 
  • "feeling more connected and less alone"; 
  • "feeling armed with information and knowledge";
  • "an understanding of the value of planning and taking action for the future"; and 
  • "feeling able to create a personal action plan for things such as exercise, dance [etc.]."

Parkinson's Disease and finding time to practice self-care

According to Sarah Vevers in What to know about Parkinson's Disease self-care (2023) there are at least ten, common-sense ways to practice self-care when one is a PwP. She believes that it is important for PwP to "prioritize self-care for their physical and mental health". Here is her list.
  • Exercise (aerobic, strength, balance and stretching)
  • Socialising (social ties = brain health)
  • Healthy Diet (variety + calcium/vitamin D)
  • Hobbies (more self-care & less stress)
  • Yoga and Meditation (= wellness, stress, emotional health and sleep)
  • Staying independent (occupational therapy)
  • Massage Therapy (= motor & non-motor symptoms)
  • Learn about the condition (PD)
  • Join a Support Group
  • Self-care for Carers

Mobile health intervention for self-management...in PwP (South Korea)

Park, et.al., in their research project Effect of mobile health intervention for self-management on self-efficacy...in people with Parkinson's Disease...(2022), used "mobile applications, smartwatches, smartphone-based short text messages and information, and telephone counselling..." with a small group of PwP who were outpatients at a university hospital clinic. 

"After 16 weeks, self-efficacy and non-motor symptom scores in the intervention group significantly improved compared to those in the control group. However, no significant differences were observed in the motor symptoms, self-management, and quality of life between the groups." It was concluded that the "mobile health intervention for self-management is effective for self-efficacy and non-motor symptoms in people with Parkinson's disease." 
So, watches and smartphones could have a positive effect on how PwP manage their medication intake, their exercise, their social life and gather information but has little or no effect on their motor symptoms.
Practical PD self-care handout
This easy-to-read and beautifully illustrated handout, You're diagnosed with Parkinson's Disease - Self Management is a handy resource for any PwP. The following sections contain useful advice:
  • Medicine;
  • Balance;
  • Walking; and
  • Standing.
This seven-page handout is worth printing.

6 Medication-Free Ways To Feel Better With Parkinson's Disease

The Parkinson's Disease and Movement Disorders Center at Johns Hopkins Hospital in the USA also have a useful resource called 6 Medication-Free Ways To Feel Better... Its focus is on the following integrative therapies:

  • ?Nutritional Supplements?; 
  • Tai Chi;
  • Yoga;
  • Massage Therapy;
  • Movement Therapies; and
  • Acupuncture.   

Concluding thought...

Self-care and my self-management should not taken for granted when one is a PwP. I rely on both my wife and my caregiver to help with the care and that generates elements of self-management on my part.


After living with PD since at least 2012, I have begun to regard Parkinson's as my accompanied or cabin baggage that is always with me, because:

It is a permanent reminder of my limitations as a PwP;
It is a burden that I will bear for life;
It is always packed and ready to go;
It is lightweight and waterproof;
There is no charge for it when I check in to travel; and 
It is accepted by all modes of transportation.

Till next time, dear reader...
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