I have been very busy these last few months making connections with other patients, researchers, and writers. It’s not been easy given the COVID pandemic. Zoom meetings and emails have replaced the in person and personal. We are all required to adapt and become comfortable with the uncomfortable reality of life during COVID. On the one hand, healthcare has become more complicated but also more rationale as we are all […]
I am a patient activist with a chronic health condition. There are many types of patients out there but this is the label that seems to fit me most comfortably. I listen to everything my medical team says. I also ask questions. Questions that sometimes make people uncomfortable. I do my own research and after critical analysis, I make up my own mind. For healthcare professionals, it’s a job or […]
The article is published at last. My specialist at the AMDC deserves much of the credit. He is experienced with publication and I am not. He expertly navigated the choppy waters of the publication process to bring the article safely to shore. It was published in the Mitochondrion Journal, an international peer reviewed journal of the Mitochondrial Medicine Society. I realize it is a tremendous honor to have the work […]
I am travelling to Denver Colorado from March 12-15th to present at the Low Carb Denver 2020 Conference. What could be sweeter than finding community? I have been working in the scientific community for much of the past two years as we prepared the poster and the article for publication. This has been a great learning experience for me and I am grateful for the education. My heart is with […]
The end of the year is a time of reflection for me. Moving forward into 2020, I am struck by how far I have traveled in my health recovery. According to my personal trainer, I am now an athlete at 56, and can dead lift and back squat my body weight. I have never felt better in my life. This year has been remarkable on so many levels. I am […]
I just returned from the MitNET 2019 Conference in Toronto. What an amazing event! My research on an improved communication model is picking up speed! It feels like the last three years of hard work are finally starting to pay off. I met a lot of Canadian researchers and patients working to advance the research in mitochondrial disease. There were also some researchers that came in from the UK and […]
The lift off and launch of this website has been a remarkable adventure for me. Four months ago, I knew nothing about web development. Although there was a vague awareness that people did this for a living and that coding was somehow involved, I really knew nothing. Research I could do, and how to email and use a word processor, but that was about it. At 56, I was resigned […]
Stunning news. I am travelling next month to the MitoNet 2019 Conference in Toronto, ON, Canada. They contacted me to tell me the UMDF Poster presented in Washington DC In June has been accepted. It’s unusual to present a poster twice but I am bringing a very different research focus to the poster this time around. I plan to focus on the process and not the content of the research […]
If you want your healthcare experience to matter, you need to understand that healthcare speaks the language of science. It’s called evidence based medicine but researchers decide what is evidence based, not patients. Where science and religion meet is that both use dogma to support their authority. A single case report is unlikely to change clinical practice in medicine. Many single cases showing the same result are still not enough […]
The days are getting shorter now, and the nights come sooner. I often see the end of summer as as an opportunity for deeper reflection. The crisp leaves of autumn are a welcome change from the sweltering heat of a summer past its prime. The change of season reminds me once again of how everything in life ebbs and flows, the seasons change, children grow and we grow older too. […]