Tag

chronic illness

Finding a Style that Works

By | Advocate, ePatient, Podcasts | No Comments

You’re gonna love hearing from Morgan Gleason, already a veteran advocate after making a YouTube video when she was 15 that went viral about her frustrations as a patient in the hospital. Welcome to this fifth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Let’s jump right in!

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Setting Personal Health Goals

By | Caregiver, ePatient, Podcasts | No Comments

Episode Summary

We’re going somewhere with our best health journey. Destination: Personal health goals. If you’re well, stay well. If you’re acutely ill, get over it. If you’re chronically ill or dying, live the best life possible. There’s a difference between medical and personal health goals. Onward. Read More

MS: My Door to Peak Performance

By | ePatient | 6 Comments

It’s been a strange week post-infusion.  The infusion wore me down. My pathological optimism took a hit. Mood has its ups and downs in the best of circumstances. Although I mostly live up, the human condition is variable, jagged, up and down. I don’t dwell much on my Multiple Sclerosis. It’s seriously annoying, but I am not Multiple Sclerosis. This week I can’t shake having a progressive illness, especially during the witching hour from 1 am to 4 am. I saw my physical therapist. She told me I’m progressing very slowly. 2-3% a year over the past five years since she started recording the Boston University AM-PAC™ for me. Sheesh, that’s pretty specific. Slow, but still progressive. Walking’s my biggest challenge, as you know.  I’ve gone from walking slowly unassisted to walking better and safer with a cane.  Now it seems like I need two canes when I’m feeling less strong and on uneven surfaces. Plus I started using an electric wheelchair when I’ve exceeded my endurance limits. A month or so ago I graduated to a trike with 27 instead of eight gears when I noticed I was living at gear 2 on slight inclines. Ten years ago I set a minimum target of 3500 steps a day. I actually averaged 7500 steps a day five years ago but kept the minimum of 3500 because I so like to exceed expectations. Even my own. Now I average 4500 a day.  I’ve only missed a handful of days at 3500 steps in the past 10 years – once when I had pneumonia, and several immediately post infusion.

I don’t share my demons for your sympathy. We all have demons, in different flavors. I share my demons to highlight my goal of operating at peak performance. I used to think of peak performance as something athletes did. Serena Williams, one of my athlete heroes, lives at peak performance. Peak performance is a moving target for everyone as circumstances change. For Serena, the moving target has been age and pregnancy. For someone with a progressive condition, like MS or aging, peak performance is also a moving target.

Peak performance depends on equal shares of genes/biology, circumstances, effort, and luck. I’m a white man born with pathological optimism.  Those are genes. I did nothing to get them. They’re gifts. So is the MS. Circumstances are that I live in the US, I have access to many modes of transportation, our water is clean and clear, and electricity is plentiful. We can take advantage of circumstancesEffort is my routine of diet, exercise and stress management, loving my family, feeding my network, showing up. I choose to put in the work. Luck is that I met my wife and that both my sons settled in Boston. I’m thankful for luckEffort is that my wife and I pulled up stakes and moved from upstate NY to Boston when our sons settled here.  Circumstance is that Boston has many choices for healthcare delivery so I can pick and choose. Make sense?

It’s actually fun, curious, gratifying and hopeful to reveal and assemble the pieces of the peak performance puzzle.  I never appreciated how much work it is nor how rewarding. It takes a team to live at peak performance. I have a great team.  That’s circumstance, effort, and luck.

My mission expressed in my brand, Health Hats, has been to empower people as they travel toward best health.  Lately, I feel like I’ve lost touch with the essence of empower. It’s been feeling arrogant. I’m not giving anyone anything.  I’m not liberating anyone. I have no magic sauce, silver bullet, elixir, wand, pills or buds for empowerment. Maybe empower means that I’m participating in someone’s work to operate at peak performance. As a guest or a teammate, of course. OK, I can live with that.

Multiple Sclerosis opened my door to peak performance. Thanks for stepping through that door with me. Quite a ride.

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More: Journal for Best Health

By | ePatient | One Comment

Julie Holliday, a reader of last week’s post, wrote:

I found this post very difficult to read. It sounded so interesting and I wanted to consider sharing it but just got lost in the dense sea of words. Could you consider making more paragraphs?_______________________________________________________________________

Ok, Julie. Here goes:

I seek best health for myself and others. I define best health as operating at peak performance as often as possible over time.  It’s living the best life possible given my genetics and biology, social circumstances, and physical environment – all of which are either out of my control or I have limited control. I can’t change my genetics, but with great difficulty, I could move somewhere else (physical environment). With less difficulty, I could increase my mobility with a handicapped public transportation pass (social circumstances).

However, sometimes I can control my medical care and more often I can change my individual behavior. Still, these are not easy and require planning, experimentation, and effort. The problem with chronic illness is that the opportunity to be thoughtful and try stuff out can be rare and short. Read More

Journal for Best Health

By | ePatient | 5 Comments

For me, the work of maintaining best health with a chronic disease takes large parts of each day. I feel fortunate when the routine just flows without thinking. Like walking used to feel.  I didn’t have to focus on each step I took. Now I scan for uneven pavement, pick up my left foot high enough not to trip, and check my fuel gauges: Have I reached my daily step limit? Has my medicine kicked in yet that helps my impaired nerves work so I can safely walk? Should I walk where ever I’m going or use the electric wheelchair or Lyft? I miss thoughtless walking. The process I use for managing and adjusting my self-care routine includes experimentation, tracking, journaling (journaling is narrative tracking), adjusting. I try to create a care plan for myself complete with goal and actions – project management. I use lists, spreadsheets, and iPhone/Apple Watch reminders to manage the plan and see how it’s working. Read More

Photo by Elijah Hiett on Unsplash

National Action Plan to Better Manage Pain

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Researcher | One Comment

Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians or care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.

Greetings fellow patient/caregiver activists and advocates! I need your help to be successful in some work I’m doing to help people use information better in managing pain. This post takes two minutes to read. A couple of links might take 7 minutes to read. Thinking and responding…. If you can, please take the time. I’m part of this team and I have my own experience with pain management and decision-making. We need a wider reality check. That’s you. Thanks for all you do. Read More

Helping Hands Everywhere

By | ePatient | 2 Comments

I took my foldable electric wheelchair solo on my trip to Philadelphia this week. My last solo wheelchair experience was in New York City in 1977 when I took a course at NYU’s Rusk Institute of Physical Rehabilitation. On the second day of the two-week course, I spent the whole day in a wheelchair by myself.  It was terrifying. I got stuck in a pothole crossing Fifth Avenue during rush hour.  The ground rules were, never get out of the chair. A homeless woman ran over and pushed me across before I got run over by the honking yellow cabs. On Tuesday, in Philly, I got stuck again in a small sidewalk pothole and a man, sitting on the curb with an “I’m homeless” sign came over and pushed me out. I saw him again on my way back from the restaurant. I handed him $10 and thanked him for helping me. He wouldn’t take it, I was just helping you out. I thanked him again and told him, you helped me and now I’m helping you. He took it. Read More