I want to serve the Alzheimer's & Dementia community on the federal level. Read below for details. Please consider signing this petition requesting me as the person (advocate) you want on this council. I will be your voice, by listening to you the caregiver and person with dementia, as I have been since I was diagnosed. I will keep you updated with summaries and relevant links to what is happening on both my Facebook page and website.
Most people think of Alzheimer's and dementia as "...that old person's disease, where they get senile and lose their memory." What most people don't understand is, that is just a couple symptoms of the disease in the mid stage, not to mention it is not exclusively an 'old person's disease.' An article from the Mayo Clinic's website lists (not exhaustive) the different stages along with the symptoms common to those stages. But with Alzheimer's you never have a clear linear path of symptoms. Sometimes you don't even have a correct or complete diagnosis because as the disease progresses, you can have symptom's develop that indicate you have another type of dementia on top of what has been diagnosed or that it changes the diagnosis. Example: Many people who have Lewey Bodies Dementia also have Alzheimer's or Parkinson's or all three!
In our first series of the Being Patient Podcast, we meet Brian Kursonis. When Brian was in his early fifties, he knew something was wrong. He would frequently blank out at his computer screen at his office job processing retirement plans, then a bad case of vertigo forced him to seek medical help. It took a year before Brian was diagnosed with early onset Alzheimer's disease. In this episode, Brian takes us on his journey of being diagnosed and gives us insight from navigating the healthcare system and explains why it was his fiancé Kimberly who forced the doctors to test for Alzheimer's.
Being Patient's founder Deborah Kan resigned from her job as Executive Producer at the Wall Street Journal to redesign reporting on health, after her mother was diagnosed with Alzheimer’s disease. In the Being Patient Podcast, we examine the latest research on the prevention, treatment and care of the disease from the patient’s point of view. We give patients and carers the tools to map the landscape of the disease and go straight to the expert community to get the answers they want to know. We aim to elevate the patient’s voice in important conversations and help researchers understand their patient communities.
Click the red play button below to listen to the podcast.
An older article from August 2013 in Scientific American describes how and why a promising drug trial is taking place at Wake Forest University and about 30 other locations around the country. You can follow the link to the article here. The drug trial is funded by NIH through NIA and currently is in phase three.