So, this past Sunday, I had coffee with my doctor to discuss how I could help with her research and my upcoming fundraiser. If you are shaking your head with disbelief, yes, I had coffee with my doctor on Sunday!
We discussed her research project, an upcoming fundraiser (see more below) and a possible opportunity for me to speak on December 13 at the JCC.
An interesting part of our discussion was when Jori told me that young neurologists do not want to become movement disorder specialists and/or work with Parkinson's patients! She explained that a young interns first experience with Parkinson's patients generally occurs in a room full of late stage patients over the age of 70. For a split second I was judgmental and then I remembered my first experience in the waiting room of the NYU Parkinson's Center. I saw those same elderly, late stage patients and prayed that would never be me.
If you are a doctor who is considering becoming a movement disorder specialist and working with Parkinson's patients, remember that while the elderly, late stage patients are the face of PD, so am I. People like me and our families need you. So, if your first experience with Parkinson's patients is similar to the one described above, take a deep breath and imagine how we feel. Again, we need you!
Sometimes in my bed at night, I curse the dark and I pray for light. And sometimes, the light's no consolation...
Huey Lewis and the News
The above is a shout out to my brothers and sisters with PD. Anxiety and stress cause insomnia, which in turn, exacerbates your fatigue. While all of the above are symptoms of PD, I find that it helps to tell myself that the anxiety is a symptom and not real. This is not an excuse for avoiding with real issues in your life, but it does give you permission to put them in perspective.
Community Advisory Board
Patients, caregivers and relatives:
Are you are interested in getting involved in a community advisory board that will shape research and practice which will help people with PD? An advisory board is forming for the project below and we need your input. Without the advice of patients and family members, doctors will never know exactly what the needs of those with PD are. To join the board please contact me jandrejack@gmail.com.
Parkinson's Disease (PD) is a debilitating and costly neurodegenerative condition that affects 1-2 million people annually in the US. As PD progresses, symptoms increase in number and severity, and many people become homebound, losing their access to care despite having the greatest need. In 2014, the Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders at NYU Langone Medical Center launched the Edmond J. Safra Interdisciplinary Home Visit Program to deliver patient-centered care to homebound individuals with advanced PD and related disorders. We bring a team of a Parkinson's-specialized neurologist, nurse, and social worker directly to our patients and caregivers on a quarterly basis, pushing past the clinic walls to meet our patients when and where they need us most.
We have conducted over 280 visits to nearly 100 people across New York City. Despite being one of the oldest and most disabled PD populations ever described, and despite the expected progression of PD over one year, participation in the Home Visit Program leads to stabilization and improvement of quality of life in this vulnerable population. We are actively engaged in improving the scope and reach of the Home Visit Program to create a model that could be replicated at other centers nationwide. Our hope for this program is to provide a safety net for hundreds of thousands of people struggling with PD.
Fundraiser Now A Reality!
The above fundraising campaign will soon have a live link for those of you who wish to give! Remember 100% of the proceeds will go to the Edmond J. Safra Interdisciplinary Home Visit Program. Sponsors for this event include: The Committee for Disabled Students, The Student Union, Veterans Affairs, Chartwells, Magical Nights Inc. and Ace Tent & Party Rentals.
Are you are interested in getting involved in a community advisory board that will shape research and practice which will help people with PD? An advisory board is forming for the project below and we need your input. Without the advice of patients and family members, doctors will never know exactly what the needs of those with PD are. To join the board please contact me jandrejack@gmail.com.
Parkinson's Disease (PD) is a debilitating and costly neurodegenerative condition that affects 1-2 million people annually in the US. As PD progresses, symptoms increase in number and severity, and many people become homebound, losing their access to care despite having the greatest need. In 2014, the Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders at NYU Langone Medical Center launched the Edmond J. Safra Interdisciplinary Home Visit Program to deliver patient-centered care to homebound individuals with advanced PD and related disorders. We bring a team of a Parkinson's-specialized neurologist, nurse, and social worker directly to our patients and caregivers on a quarterly basis, pushing past the clinic walls to meet our patients when and where they need us most.
We have conducted over 280 visits to nearly 100 people across New York City. Despite being one of the oldest and most disabled PD populations ever described, and despite the expected progression of PD over one year, participation in the Home Visit Program leads to stabilization and improvement of quality of life in this vulnerable population. We are actively engaged in improving the scope and reach of the Home Visit Program to create a model that could be replicated at other centers nationwide. Our hope for this program is to provide a safety net for hundreds of thousands of people struggling with PD.
Fundraiser Now A Reality!
