Rory’s Always On Newsletter

Rory’s Always On Newsletter focuses on the author's experiences with Parkinson's disease, exploring the emotional and physical challenges, healthcare communication and innovation, and the power of community and technology in managing the condition. It includes personal stories, insights into healthcare improvements, and the role of exercise and diet.

Parkinson's Disease Management Healthcare System Communication and Innovation Personal Health Stories Exercise and Wellness Technology in Healthcare Community and Support for Chronic Conditions

The hottest Substack posts of Rory’s Always On Newsletter

And their main takeaways

Five Years With Parkinson's

2869 implied HN points • 05 Jan 24
🏥 Health & Wellness Personal Story Parkinson's
  1. The journey with Parkinson's can vary greatly between individuals.
  2. Remaining positive and proactive is important in managing Parkinson's.
  3. Support and understanding from healthcare professionals and employers can greatly impact the experience of those with Parkinson's.

A Plan To End Parkinson's

1238 implied HN points • 18 Jan 24
🏥 Health Politics Research Funding Advocacy Government
  1. The US National Plan to End Parkinson's focused on increasing funding for research.
  2. Comparing costs of Parkinson's care and research can reveal significant disparities.
  3. Involving a committee of experts can help streamline research efforts and advance treatment strategies.
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After The Fall - Two

2908 implied HN points • 24 Oct 23
🏥 Health & Wellness Healthcare Recovery
  1. Improving communication is crucial within the healthcare system.
  2. Patients often face challenges in obtaining information about their treatment.
  3. The NHS can benefit from fundamental changes in its communication processes.

Signing up to "Our Future Health"

609 implied HN points • 31 Jan 24
🏥 Health & Wellness Medical Research Data Sharing
  1. Signing up for 'Our Future Health' involves sharing medical data and participating in research.
  2. The process includes completing a detailed health questionnaire and undergoing tests at a clinic.
  3. Volunteers have the option to participate in various aspects of the program and a strong emphasis is placed on the voluntary nature of involvement.

LabGenius - the long slow road to faster drug discovery

530 implied HN points • 07 Feb 24
🔬 Science Biotech AI Drug Discovery Machine Learning Clinical Trials
  1. AI and machine learning are revolutionizing drug discovery by speeding up the identification of potential treatments, leading to big rewards for those in the industry.
  2. Building a successful biotech company requires patience, determination, and significant funding, often with a focus on research and development before revenue generation.
  3. Investors in biotech companies must be prepared for a long journey of constant failures and successes, akin to the process of drug discovery, with potential acquisitions being key outcomes.

Movers & Shakers: A Parky Charter

471 implied HN points • 10 Feb 24
🏥 Health & Wellness Parkinson's Podcast Advocacy Healthcare
  1. The podcast Movers & Shakers discusses creating a charter for better treatment for people with Parkinson’s.
  2. The charter focuses on timely access to neurologists, better information on diagnosis, and increased government investment in Parkinson’s research.
  3. The charter also aims for access to specialized teams for Parkinson's patients and the introduction of a Parkinson's Passport for easier access to benefits and services.

Movers and Shakers: Partners

1257 implied HN points • 28 Oct 23
🏥 Health & Wellness Parkinson's Caregiving
  1. The podcast episode highlights the role of partners in supporting individuals with Parkinson's
  2. Partners share emotional and practical challenges faced in caring for someone with Parkinson's
  3. Different partners have varying ways of providing support and coping with the impact of Parkinson's

Movers and Shakers: Losing Your Voice

786 implied HN points • 15 Oct 23
🏥 Health & Wellness Parkinson's Treatment Therapy
  1. The podcast episode discusses the lesser-known symptom of speech impairment in Parkinson's disease.
  2. People with Parkinson's, like Mark Mardell and Gillian Lacey-Solymar, can experience significant voice changes.
  3. DBS treatment for Parkinson's can have side effects on speech, but specialized training like LSVT can help improve voice quality.

My Parkinson's data - at last!

1356 implied HN points • 12 Jul 23
🏥 Health & Wellness Parkinson's Data Analysis Treatment Monitoring Health tech
  1. The author has been seeking hard data about his Parkinson's symptoms to understand their severity and response to medication.
  2. Monitoring technology like PD Monitor can provide detailed insights into symptom presence and medication effectiveness over time.
  3. The data revealed that the effectiveness of the author's medication peaks before 11am, making it clear that eating a big breakfast close to pill time can impact absorption.

Sonia Gandhi's mission to change Parkinson's trials

727 implied HN points • 05 Sep 23
🏥 Health & Wellness Clinical Trials Neuroscience
  1. Professor Sonia Gandhi leads a mission to improve Parkinson's trials by implementing ACT PD initiative for more efficient drug testing.
  2. The UK aims to become a hub for clinical trials like the multi-arm system to find disease-modifying therapies for Parkinson's faster.
  3. Funding is crucial for scientists like Professor Gandhi to advance technology and trial designs for breakthroughs in Parkinson's research.

Parky People

845 implied HN points • 06 Jul 23
🏥 Health & Wellness Parkinson's
  1. World Parkinson's Congress offers a wide range of informative sessions
  2. People living with Parkinson's disease show resilience and strength through exercise and positivity
  3. Women with Parkinson's are advocating for visibility and awareness in the community

Searching for Stephen

963 implied HN points • 12 Jun 23
🎨 Art & Illustration Memoir Theatre Family History Letters
  1. The author searched online for information about their brother's career and found a theatre program that shed light on his past.
  2. Their brother, Stephen, had a career in acting and was part of productions in the Old Vic theatre during the 1950s.
  3. Letters from their mother provided additional insight into their brother's life and the dynamics of their family during that time.

Biking to Barcelona

845 implied HN points • 28 Jun 23
🏥 Health & Wellness Exercise Wearable Technology
  1. Some people are using unique methods to raise awareness and funds for Parkinson's research, like running marathons or biking across countries.
  2. Exercise is important for managing Parkinson's symptoms and there is a focus on collecting data about how it impacts individuals.
  3. Technology, like wearables and apps, is being used to collect data on Parkinson's symptoms and to assess the effectiveness of different management strategies.