Podcast Summary
Parkinson's diagnosis: A former publishing executive, Susie Sainsbury, kept her Parkinson's diagnosis hidden for three years due to her husband's busy schedule. Now, she's dedicated to making a difference for those affected by the condition through her involvement in a holistic care project.
Dame Susie Sainsbury, a former publishing executive and wife of philanthropist Lord David Sainsbury, has been living with Parkinson's for nearly 20 years. Before her diagnosis, she was active in the arts community and raising her three children. She and her husband have invested in a project aimed at holistic care for people with Parkinson's, a priority in the Parkinson's charter. Susie was diagnosed after experiencing symptoms such as dragging her left foot for a year. She kept her diagnosis hidden from others for three years due to her husband's busy schedule in government. The Sainsburys have a long history of charitable giving, with David starting the charitable foundation in the 1970s when they came into significant wealth from a grocery company. Susie had minimal interest in Parkinson's before her diagnosis, but now she is actively involved in making a difference for those affected by the condition.
Parkinson's diagnosis disclosure: Individuals diagnosed with Parkinson's disease face a personal decision on when and how to share their diagnosis with loved ones, influenced by factors like symptom severity and personal circumstances. Disclosure may be delayed due to fear of worrying loved ones or due to noticeable symptoms.
Individuals diagnosed with Parkinson's disease often face the challenge of deciding when and how to share their diagnosis with loved ones. This decision can be influenced by various factors, including the severity of symptoms, personal circumstances, and the potential impact on family members. Some people, like the speaker in this conversation, choose to keep it a secret for a while to avoid worrying their loved ones. Others may feel pressured to disclose due to noticeable symptoms. The speaker in this conversation shared her experience of being diagnosed in 2005 and deciding to keep it a secret for several years. She eventually disclosed her condition when her daughter noticed her shaking hand. The speaker also discussed the importance of finding the right neurologist for treatment and care, sharing her experience of losing a previous doctor and finding a new one through a mutual interest in football. Overall, the conversation highlights the personal nature of dealing with a Parkinson's diagnosis and the importance of finding support and care while managing the condition.
Buzzblum's impact on speaker's PD management: A bright and committed neurologist from Netherlands, recommended by late husband's mentor, significantly improved speaker's PD management through frequent communication, exercise encouragement, and leading a research study on exercise's effects on PD risk
Buzzblum, a neurologist based in the Netherlands, has significantly impacted the speaker's life in managing her Parkinson's disease. Buzzblum, who is described as incredibly bright, totally committed, very funny, and impeccable in English, was recommended by her late husband's mentor, Andrew Lee. Despite being in the Netherlands, they were able to communicate frequently through Zoom, email, and occasional meetings. Buzzblum encouraged the speaker to maintain a strict exercise regime, believing that it could prevent Parkinson's disease. He is currently leading a research study on the effects of exercise on those at risk of developing Parkinson's. The speaker's husband was initially shocked when she started seeing Buzzblum, but he approved of the arrangement due to Buzzblum's reputation and the potential benefits for his wife's health.
Parkinson's disease causes and community support: Both genetic and environmental factors contribute to Parkinson's disease, and regular exercise can help manage symptoms. A new initiative called Prime offers community-based support for patients, improving access to care and advice.
While the causes of Parkinson's disease are still under debate, both genetic and environmental factors are believed to play a role. Some people believe that certain triggers can activate the genetic predisposition. Regular exercise is a recognized part of the treatment, and it can help manage symptoms for some individuals. However, the response to exercise and medication can vary greatly from person to person. A new initiative called Prime aims to provide community-based support for Parkinson's patients, allowing them to receive advice and care without waiting for appointments. This approach has the potential to make a significant impact on the lives of those suffering from the disease. The project, which is a collaboration between the Bases Institute in Holland and a team in Bristol and Bath, was initially disrupted by COVID-19 but is making progress.
Integrated care for Parkinson's disease patients: Successful implementation of integrated care models in UK and Netherlands provide patients with consistent access to community nurses and various therapies, aiming to improve overall care and eventually replicate nationwide
Integrated care for Parkinson's disease patients, which includes access to a named community nurse and various therapies, is being successfully implemented in projects in both Bristol, UK, and the Netherlands. This care model aims to provide patients with a known point of contact for different levels of NHS care, including speech therapy, physiotherapy, and nutrition advice. The projects are measuring their impact with the help of experts, and the goal is to eventually replicate this model across the country. Research and new drugs are also contributing to the progress in managing Parkinson's disease. Collaboration between the two projects in different countries is providing valuable insights and learning opportunities. The optimism for the future lies in the advancements in research and the potential for new treatments, such as epimorphine pumps, which offer faster and more direct drug delivery to the brain.
Parkinson's care and assisted dying: People with Parkinson's disease face challenges but find positives, yet concerns about speech and mobility loss may lead to discussions about assisted dying. The Parky Charter advocates for better resources and support for improved care.
Living with Parkinson's disease presents unique challenges, but many people find ways to cope and even consider themselves lucky in some ways due to the experiences and opportunities it has brought them. However, there are concerns about potential loss of speech and mobility, which can impact daily life and lead to discussions about assisted dying. The quality of care for Parkinson's patients in the country is a topic of concern, and the Parky Charter aims to address these issues by advocating for better resources and support for those affected by the disease.
Parkinson's integration: The complexity of Parkinson's disease necessitates continued efforts to raise awareness, understand each person's unique experience, and develop more integrated and effective treatments.
Need for better integration and understanding of the various aspects of Parkinson's disease. Susie Sainsbury, a prominent figure in the Parkinson's community, emphasized the importance of education and awareness, noting that the group has made significant strides in making the disease a topic of interest. She also highlighted the challenge of dealing with the disease's complexity and the fact that each person's experience with Parkinson's is unique. Another key point made during the conversation was the issue of unintegrated treatments and the need for a more holistic approach. Overall, the discussion underscored the importance of continued efforts to raise awareness and understanding of Parkinson's disease and the need for more integrated and effective treatments.