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

Movers and Shakers: Bas Bloem

515 implied HN points • 02 Nov 24
🏥 Health & Wellness Neurology Parkinson's Research Healthcare Optimism
  1. Bas Bloem wants to eliminate Parkinson's disease so he can make himself unemployed. He believes that it's possible to make significant advances in treating and understanding the condition.
  2. Environmental factors, especially pesticides, may play a major role in causing Parkinson's. Bas argues that banning harmful substances could help reduce the disease's prevalence.
  3. The healthcare system in the Netherlands is more efficient for Parkinson's treatment, with less waiting time for patients. They focus on teamwork among specialists to provide comprehensive care.

Movers and Shakers: Help!

892 implied HN points • 27 Oct 24
🏥 Health & Wellness Chronic Illness Caregiving Health Policies Mental health
  1. Parkinson's disease can progress in ways that become very hard for patients and caregivers. It's important to prepare for these changes to ensure proper care and support.
  2. There are resources and help available for those caring for someone with Parkinson's, like occupational therapy and local support groups. Connecting with others can provide useful information and comfort.
  3. If you live outside of areas with great services, reach out to your local Parkinson's group and keep the Parkinson’s UK helpline number handy for expert advice.

Privacy Paranoia and the NHS app

1150 implied HN points • 21 Oct 24
🏥 Health Politics Data Privacy Patient rights Digital Health Government Policy
  1. Data protection concerns are slowing down important updates in the NHS. It's essential to modernize the system to serve patients better.
  2. Public fear over data sharing often outweighs the potential benefits for healthcare, like early cancer detection.
  3. Other countries, like Sweden, show that we can provide better digital health tools without excessive fear of data issues. It's time to move forward and improve our health services.

NHS Reform - big gains from small moves

575 implied HN points • 24 Oct 24
🏥 Health Politics Healthcare Reform Patient Care Healthcare system Public Health Policy Solutions
  1. Small changes can lead to big improvements in the NHS, like having administrators handle tasks normally done by doctors, which can cut waiting times significantly.
  2. Many missed hospital appointments could be avoided by improving text reminders and allowing patients to choose their own appointment times, which leads to better attendance rates.
  3. Using simple tech solutions or AI to remind patients about appointments can really help reduce the number of people who don't show up, making the system work better for everyone.

Sophie from Romania - Publication Day!

1230 implied HN points • 10 Oct 24
📚 Literature Books Authors Publishing Memoir Pets
  1. Publication day is a big deal for authors, filled with emotions and hard work. It's exciting to finally share your story after so much time spent writing and editing.
  2. The journey of adopting a rescue dog can be challenging, but it often comes with rewarding moments. The author learned a lot about their dog, Sophie, and shared her growth from being scared to becoming more confident.
  3. Community support is crucial for both authors and pet owners. People love to share their own rescue stories, and this connection makes the experience even more special.
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Exenatide - the drug that failed

595 implied HN points • 18 Oct 24
🏥 Health Politics Clinical Trials Drug Development Patient Care Medical Research
  1. Exenatide, a drug initially hopeful for slowing Parkinson's, failed in its final trial. This has left many in the Parkinson's community feeling uncertain and disappointed.
  2. Researchers are still figuring out why the drug worked in earlier tests but failed later. They need more data to understand if it was because the drug didn't reach the brain or if it just wasn't effective.
  3. The failure of Exenatide could make it harder for other similar drugs to get funding for trials. Meanwhile, experts emphasize that exercise remains a reliable way to manage Parkinson's symptoms.

Movers and Shakers: Assisted Dying

376 implied HN points • 19 Oct 24
🏥 Health Politics Legal issues Ethics Patient rights
  1. There's a big debate about whether terminally ill people should get legal help to end their lives. Some believe the laws should change to support this decision, while others think it's best to keep the state out of it.
  2. Many people, especially in the Parkinson's community, might not qualify for assisted dying under current proposals. They may not get a 'terminal' diagnosis in time, even if their suffering is severe.
  3. Countries like Spain have different rules about assisted dying, allowing people with chronic conditions to seek help. This brings up questions about who decides what's considered unbearable suffering.

Movers and Shakers: The NHS Health Check

515 implied HN points • 12 Oct 24
🏥 Health Politics Healthcare Policy Patient Care Neurology
  1. The waiting times for Parkinson's care in places like Oxford can be shocking, reaching up to 56 weeks for a new appointment.
  2. Many patients feel let down by the NHS and sometimes choose to pay for private care due to long delays in service.
  3. Fixing the NHS needs both immediate funding for extra appointments and long-term improvements to the system to make it work better.

Movers and Shakers: Can you sue over Parkinson's?

674 implied HN points • 05 Oct 24
🏥 Health Politics Public Health Environmental health Legal issues Epidemiology Chronic Illness
  1. It's unclear if people with Parkinson's can sue for their condition. A recent case showed the link between Parkinson's and chemicals like TCE isn't proven enough yet.
  2. The case of Holmes v Poeton involved a worker who claimed his Parkinson's was caused by chemical exposure at work. Courts found the evidence too weak to support this claim.
  3. Studies suggest some chemicals might increase the risk of Parkinson's, but proving direct causation is hard because many factors can influence health conditions.

The Biography Bots are Back

615 implied HN points • 04 Oct 24
📚 Literature Biographies AI writing Publishing Criticism
  1. Authors often check their names online to manage their reputation and prevent other products from hijacking their name. It's important for them to stay aware, especially around book release dates.
  2. AI-created biographies often contain inaccuracies and may read like generic content. Many times, they lack the personal touch and detail that a real biography should have.
  3. Despite the rise of AI, there's still a significant difference in quality between AI and human-written works. Original and creative writers can still stand out and have value that AI can't replicate.

Five Years With Parkinson's

2896 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

1249 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.

Signing up to "Our Future Health"

615 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

535 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

476 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.

My Parkinson's data - at last!

1368 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.

Movers and Shakers: Losing Your Voice

793 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.

Sonia Gandhi's mission to change Parkinson's trials

734 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.

Searching for Stephen

972 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.

Parky People

853 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

Biking to Barcelona

853 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.