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Darlene Harrier talks about physical therapy for those with neurodegenerative disorders like MS and Parkinson’s: intermittent, life-long care.
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I depend on my team – laypeople and professionals – to help me understand my body, abilities, circumstances, moods, and reactions. Profound understanding promotes self-appreciation – loving myself as I am. On my professional team, my primary care doc, chiropractor, massage therapist, neurologist, optometrist, physical therapist, and acupuncturist are the strongest and most important professionals for me. I’ve learned which of their skills help me, how they communicate with me, and what work I need to do to maximize their impact. This episode begins an intermittent series about the professionals on my health team, starting with Dr. Keith Puri, my chiropractor. I’ve learned much from Dr. Puri about maximizing my gross motor capabilities through good habits. I’m indebted to him. Listen in or read on.
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
Yes, you concerned readers, I’m still playing my baritone saxophone. I’m taking lessons every two weeks via Skype. No travel time! I’ve upped my playing to 4-6 hours a week. More structured, too: scales, chords, simple rhythms. I still lose my place improvising, a lot. But I’m less in my head, thank you very much, what a relief. I’m paying more attention to my sound. I love the sound of the bottom (the bari sax is very low). I’ve changed my mouthpiece and reeds.
Devoting time to self-care – pretty fascinating in its own right. A stock question when I talk with people: what do you do for fun? Quite fascinating, try it. Knitting, dancing, jogging, singing, grandkids, soccer, hiking, needlepoint, painting, riding horses, writing, yoga, traveling. My ability to predict what a person does for fun is marginally better than my Lotto predictions. Some say I don’t have time for fun. Or, I’m ready to retire, don’t know what I’ll do. This makes me sad. Very sad. Read More
Best Health depends on relationships -relationship with my health team, my relationship with myself. We can accomplish much in these Best Health Relationships. We take stock, tell stories, complain, report, plan, decide, learn. These relationships impact our spiritual, mental and physical health. Relationships take time. Time as in arriving (scheduling, traveling), being present and accomplishing something (catching up, problem-solving, planning what’s next). Time is key to these Best Health Relationships. Early on in relationships, to establish a connection, a language, a trust, in the relationship, it’s either longer spans of time at each sitting or more frequent sittings.
During my first visit with my neurologist, he said, I know a lot about drugs and therapeutics for Multiple Sclerosis, but I don’t know anything about you, except your brain scan. My job is to get to know you. Your job is to learn about Multiple Sclerosis. Our visits were often long – 45 minutes, an hour. Soon we developed a short-hand and routine. What’s on your list? This is on mine? Wait, I think we missed one thing on your list. OK. We decided I’m going to do this, you’re going to do that. Text me to let me know how it went. Ten-fifteen minutes tops. A new clinician starts the cycle over. Build a relationship. Sometimes there’s no chemistry. Then the time (of any length) is mostly wasted, ineffective, especially if I’m in any distress, which is often. Read More
It’s hard to reach personal health goals or solve medical problems without a plan. Plans require decisions. Never-ending decisions (choices) in the health journey. Clinicians, researchers, and insurance companies study and use Clinical Decision Support (CDS) to help with the decision-making process. It’s a shortcut for using research (evidence) in the decision-making. Some talk about patient-centered decision support (see a definition at the bottom of this post). They’re trying to figure out how to help people to make decisions in two minutes of ten-minute visits. Yet, few patients or caregivers I’ve met ever talk about CDS. So how can people understand the value and limitations of CDS? Read More
My mother bought me a beautiful handmade brocade vest when I lost 45 pounds. It’s my favorite. I can’t button it now. Not even close. I haven’t worn it in several years. My personal health goal: Lose weight and keep it off. It may be the most common American health goal. American’s spent about $60 billion on weight loss in 2013. Every year, 45 million Americans go on a diet. So, I’ve learned that I can lose weight, but not keep it off. To attain my goal I need to adjust my health plan.
What is adjusting? Set a goal, try something, be dissatisfied with the result (learn), then adjust. Adjusting means changing a habit. In my experience as a student of individual and organization health, changing a habit is hard, very hard. I think of changing habits like watching water flow – water flows in the path of least resistance, makes a channel, and gets deeper. We mostly like and value those channels. They’re comfortable until they flood or become polluted. Read More
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. Read More
Several times this week I heard a variation on: I’m so discouraged, I thought I was doing better. I just keep sliding back. I really suck at this. The topics: meditating every day, losing weight, managing anxiety, soloing, recovering from surgery. I heard each from more than one person. Several people said it about multiple things. One person, me, said it about losing weight and soloing. Two things strike me here. First, sucking and second sliding back. Can’t we give ourselves a break and celebrate that we’re trying? I’m trying to meditate every day, lose weight, improve my mental health, solo on my sax!!!! Yippee for me. Yippee for us!!! Recovering, healing, learning, changing habits doesn’t happen in a straight upward line, steadily better. It’s two steps forward, one step back. It’s up and down, first wildly so, then smaller cycles of up and down, over time with forward progress. Looking at just 2 data points only frustrates us, since we tend to recognize the down after the up, rather than the up after the down. In each of the scenarios someone heard the other and provided a good job, way to go, keep it up, keep me posted, call me anytime
I honor you’re work of healing, learning, recovering. Good job, way to go, keep me posted, call me anytime.
Week 3 of my wife and my Screen-Free Sabbath. Feels pretty good. After the first week it feels like a relief. I’m reading more books – paper and not Kindle. Turned off my e-mail and social media notifications. They were all still there at sundown Saturday. No emergencies. Sitting still more often – some alone, some with my wife. Got my recumbent trike out, tuned up and rode it. Had to buy some paper Sudoku books. It affects my week as well. I’m looking at the phone less often, meditating more. Still using the iPhone for texts and phone calls-have only received a few. Using it when playing my sax: playing my recorded rehearsals, metronome, etc. Sitting on the bus or subway more often looking at people and not the screen. Noticing the blue sky and spring colors. My grandson freaked out: Will I have to do it too? All week? OMG. He’s relieved that it’s just Grandma and Opa and not him, unless he’s at our flat sundown Friday to sundown Saturday. I’ve spoken to several parents who have 5-7p screen-free every day, others do a 24-hour period as we do.
