Personal Health Goals

 

#IamAMuslim
Your goal needs to be realistic and worthy

As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals.  What do I mean? OK, people who are well want to stay well.  Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Continue reading “Personal Health Goals”

Interview: Danny on Urgent Care Radio

As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here’s a link to the episode. I’m best able to open the interview MP3 file with Music Player for Google Drive. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let me know what you think of the interview!

For those interested, here’s a link to my full 2016 Health Hats Report. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!

EHR Access for the Family Caregiver

We’re looking at technology that can help the primary caregiver support someone’s health journey. Access to the electronic health record (EHR) impacts seven of the fifteen needs described in a previous post:

    1. Common goals for the health journey developed with the person at the center, known by the entire health team
    2. Plans to attain those goals
    3. Current medications, schedule of taking, how they affect the taker
    4. History of medications, what worked and what didn’t
    5. Members of the health team, professional and lay people, how to reach them and the ability to reach them
    6. Schedule of events past and future – procedures, hospitalizations, diagnoses, appointments
    7. The same information in the hands of the entire team including the people at the center that they can understand

How can family caregivers access electronic health information of the person they support? Today, I’m with my 87-year old mother. I had her show me the portal she uses at the system where she gets most of her medical care. She wants me to have access to her medical record and wants me to be able to communicate with her doctors as she does. However, the site clearly says that unless the patient is a child under 11 years old that she can’t give me my own access to her account for technical and privacy reasons. So she gave me her login and password. This lack of direct access for primary caregivers is the norm. It’s NOT a privacy issue if the person give permission. It’s a technical issue that has long been solved by Children’s Hospitals trying to give access, some full access, some limited access, to parents and guardians of teens and children with blended and disputing parents. Rather it’s a matter of will and priorities. Some independent electronic health records, such as Practice Fusion, have mechanisms for primary caregivers to be granted access with permission. Also those health systems involved in the OpenNotes initiative – Beth Israel in Boston, Geisinger, Harborview in Seattle, are exploring giving primary caregivers access to physicians’ progress notes. Give us our data!!

Stoking the Fires

Woke up each morning last week wondering where I would find the energy to managing everything? Exercise, diet, music, family time, work, blog, other professional endeavors, medication, massage, acupuncture. Feel like my health depends on fine balance of all these things.  Made me wonder how people do it who don’t have the good fortune, the family, the health team, the opportunities, the cognition I do. How do the caregivers find the motivation, the strength, the stamina? What helps stoke or bank the fire needed to keep moving forward in the difficult moments, hours, days, of our health journey? Reflection, laughter, meditation, exercise, sharing, rest, relief, distraction, silence, recognition, and unexpected appreciation. My grief counselor said that so much in life can’t be controlled. You find the strength where and when you can. In the meantime, he focused me on the things I could control-many of the magic levers of best health-rest, diet, exercise, other stress reduction. Now we’re back to the beginning.