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MS

Nov 20 2016
Love1

Health, Wellness, and Medical Decision Support, Wherever and with Whomever

By Advocate, Caregiver, ePatient, Researcher

When diagnosed wcdsith multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn’t bring myself to Google MS.  I relied on my wife to do the research and inform me. I told my neurologist I wanted to get worse as slowly as possible and didn’t want to take anything that messed with my pathological optimism. Then I relied on him to make medical decisions for me.  No clinical decision aids. Simultaneously, friends sent me books and links about diet, lifestyle, over-the-counter supplements to help me with my MS. Thanks, I guess. Not that receptive.  Without looking up one study, I tried non-medical professionals – massage, chiropractic, and acupuncture. These I still use almost a decade later. I brought whatever I heard about or tried to my neurologist, and we discussed it. He told me that he knew about drugs and medical therapeutics, but that everything worked for someone. Some things he knew about and some he didn’t. He liked hearing what worked for me. He told me what he had heard from other patients.

When my mom was diagnosed with Pancreatic cancer, she relied on me to do the research. Well, really, she asked me questions, so I had to do the research. In fact, she didn’t make any decisions based on the evidence I uncovered. “I’ve had a good life. No surgery, no chemo, no radiation. I want to stay home.” Read More

Sep 25 2016
Love0

Pocket Therapy for #Caregivers

By Advocate, Caregiver, ePatient, Family man

My mom insisted on end-of-life care at home. At the same time she worried about being a burden to her family.  A few weeks before she died, when she once more lamented being a burden, I said, Mom you are a burden, get over it. We did. Thankfully, she laughed and accept it.

Elderly woman

Her husband wanted to die at home, but she couldn’t handle being a caregiver and put him in a nursing home. Fortunately, we could afford nursing home care for my step-dad and we could afford 24/7 care for my mom at home for her last month with family rotating in from the other coast. It was still exhausting for everyone. When my wife and I discuss end-of-life and I filled out paperwork about my wishes, I emphasize care at home.  Now I realize that is selfish.  I don’t want to burn my family out. The same burden my mother worried about. If they need to put me in a nursing home, I’ll deal with that.  Read More

Aug 07 2016
Love0

The Thorny Thicket of Feedback and Advice

By Clinician, ePatient, Leader

When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback periodically. This I listen to and follow to the best of my ability. My wife gives me feedback. After 41 years of marriage I know she’s right 95% of the time. I follow it 80% of the time. A family member asks me for advice and I’m reluctant to give it. Who am I to advise? What if it’s bad advice? Giving and taking advice or feedback seems so complex, fraught, welcome, and unwelcome.

What’s the difference between advice and feedback? According to the dictionary,

Advice is guidance or recommendations concerning future action, typically by someone regarded as knowledgeable or authoritative.

Feedback is information about reactions to a product, person’s performance of a task, etc., used as a basis of improvement.

They blend together for me.

Speaking with two teachers, math and art, we came up with empathy, modeling, and faith as the keys to giving great feedback and advice. Empathy. Listening to understand the person’s story, feelings, and perceptions. Modeling. Walk the talk. Faith. Confidence that the person is already great and can act on the feedback or advice you’re giving if it’s right for them.

So what about key factors for receiving feedback and advise? How about trust, readiness, and self-confidence? Trust. The adviser, feedbacker(?) is knowledgeable and has no other agenda than your growth or recovery. Readiness. I’m open. I want feedback. Self-confidence. I can do as suggested. Read More

Jan 31 2016
Love0

Secretary General of Your Health Team

By Advocate, Consumer, ePatient, Family man, Leader

I want to be a good leader of my healthcare team. How would I know?  Such a swirl of activity. This week my ophthalmologist wanted to refer to me another ophthalmologist.  She said she’d email her to introduce me, send over my records, and have her scheduler arrange the appointment. I’ll follow-up if I don’t hear from the scheduler in a week. My chiropractor wants to hear what the massage therapist and physical therapist recommends and aligns his plan with theirs.  My neurology nurse practitioner called me to say that the insurance company won’t cover the brand name injection I’ve taken for years because there’s a new generic medication. She doesn’t think it’s been tested enough on people before FDA approval. Instead she will prescribe a different dose of the brand name drug instead that’s still covered.  Is that OK with me?

My healthcare team is like no other team in my life – not like family, not like business teams. It feels like a team in the clouds. They never gather together as a team.  If they communicate at all it’s through me, or emails and snail mail reports, or if they’re in the same system through the electronic health record. I can think of once in 7 years that any clinician spoke to each other directly: my primary care doc called the neurologist when I fell and sustained a concussion. My wife has attended a couple of doctor appointments with me when I was first diagnosed with MS. Several times a year a prescriber speaks with a pharmacy or medical supply company to clarify an order. My family likes to stay current about my treatments, risks, appointments, and stress. They talk with me and among themselves.

Who is my team?  Me, my wife, my sons and their families, my sister, my doctors and their teams, other clinicians (massage therapist, chiropractor, acupuncturist, physical therapist, optometrist, optician, pharmacist), medical supply companies, insurance company. I’m fortunate. I’m a good e-patient and I’m a clinician myself.  I’ve selected this team (except the insurance and pharmacy benefit companies).  One of my best barometers of team effectiveness is usually how the team operates when the leader isn’t in the room. Do they work better when she’s present or absent? Do the team members treat each other with respect? Is communication open? Are they clear about accountability, do they meet their commitments? But in healthcare there are so many other factors and power dynamics between clinicians, office staff, caregivers, insurance companies, administrators.  It’s crazy complex – like being Secretary General of your health team. I wonder what Ban Ki-moon would advise?

Oct 11 2015
Love0

Adapting – Balance

By Advocate, Caregiver, Consumer, ePatient, Family man, Leader

When diagnosed 7 years ago with Multiple Sclerosis, my neurologist told me I’d had MS for 25 years. Why didn’t I know it before? He said that I was a master at unconscious adapting – my nervous system and brain adapting, creating new pathways, and my creativity in finding alternate ways to do stuff. Adapting to maintain. Now as my balance and my left leg strength diminish, I’m adapting again. I’ve left my job as well to find a better balance in my life. More adapting.  This time it’s more conscious adapting. Building my core strength, compensating for my lack of proprioception (the fifth sense of knowing where your body is), and continuing to meet my personal mission. Before I was diagnosed I composed my mission: Increase the sense of balance patients, caregivers, and clinicians feel as they work together toward best health. So, balance as not falling and life in harmony – yours and mine. Magic levers of best health: balance, harmony, adapting. Onward!

Sep 07 2015
Love0

Finally, narratives at the end

By Caregiver, Family man

Spread the rest of Mom’s ashes with my Dad’s in Grosse Pointe, MI, joined by some dear friends. He was her soul mate. They died 43 years apart. As she would have said, it was a great party. too bad I couldn’t be there. My narrative about my mom is still quite fluid. Sometimes she’s amazing, loving, and engaged – all in. A pathologically optimistic survivor. Other times a reluctant, troubled, somewhat abusive mother. At the end she was a hoot  — and the stories follow. Mostly, I think how alike we are. I’m loving, amazing, troubled, optimistic and a hoot. Narratives are coloring books with pages of the same outline, colored with different crayons, paints, markers, within the lines, outside the lines. I’m alternately relieved and uncomfortable with the narrative of troubled mother. Sort of like the narrative of me as disabled rather than healthier than I’ve ever been (except for the MS). Troubled and disabled are true.  I just can’t live there for too long – 5 minutes as a time? I’m affected by other people’s narrative about me, especially negative ones. When I’m strong, my positive narrative trumps, when I’m weaker, the negative narratives wear me down.  What narratives do you have about yourself and those in your world? How do they affect you and them? Narratives are certainly magic levers of best health. Oh, ma, the narratives of you are spiced with love.  I miss them all.

Aug 30 2015
Love0

Embracing your friend, ignorance

By Caregiver, Clinician, ePatient, Family man, Leader
Pondering ignorance this week. Not so much the ignorance we see with politicians (although that can be quite awesome on a massive scale), but the not knowing. Discovering a realm of not knowing you didn’t know existed. I’ve seen varied reactions: mild curiosity, questioning, enthusiastic digging and pulling, fear and whining. I participated in a Patient Shark Tank yesterday. A Shark Tank is a forum where aspiring entrepreneurs make business presentations to a panel of “shark” investors (or in my case, patients). I saw a combination of not knowing what they didn’t know and enthusiastic digging and pulling new information through research, interviews, and testing. These aspirants welcomed someone shining a light on something they didn’t know they didn’t know. This week members of my team asked many questions when finding something they didn’t know – clarifying, defining, path finding questions. Fear is me when I got the diagnosis of MS and was told I needed to walk with a cane.  I whined to my son, I’m 50 years old and I need a cane. Mind shut down, paralyzed, dependent. Oh get over it pop, it’s just another accessory. Ignorance is your friend – possibilities and adventure ahead.
Aug 23 2015
Love0

Push, push

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader

My wife waits to tell me about something she wants us to do or buy, because I’ll just do it or buy it. Bam, bam. I’m a doer.  Push, push.  About 20 years ago I realized that the biggest stress for my teams was me. Push, push. My line is, let’s develop our work plan with the idea that we will do 75% of what we set out to do.  If we do 100%, we didn’t set our sights high enough.  The nice thing about push, push, is that if the team or I am stressed we can pull back on the throttle and take it a little easier – no one will know, but us. If I’m unhappy with something, it’s push, push – do something to make it better.  I don’t wait well and let it play out – enjoy the moment, be patient.  This week my neurologist reviewed my progress  over the past six years (of my progressive MS) and told me I was doing great in almost everything. Everything except walking.  That’s getting worse. And he said, I’m sorry to say, but it’s not going to get better. This is where push, push doesn’t work so well.  I think I can be patient and let it play out.

Apr 05 2015
Love0

Caregiver recovery – spiritual, then mental, then physical

By Caregiver, Consumer, Family man

I took advantage of some rest and relaxation this weekend at Kripalu Meditation and Yoga Center. After six months of intense caregiving of my mom with frequent bi-coastal travel, I’m feeling an upsurge of my own MS symptoms. I spoke with someone whose mom died the same time as mine, who spent 13 years caregiving  and managing his mom’s Alzheimer’s journey. My six months seems so small in comparison.  Support and recovery of caregivers – so important. Remarkable how run down we can get. Running down spiritually, mentally, and physically. Caregiver recovery is like any recovery – recovering spiritually, then mentally, then physically. One minute meditations seem to help – appreciating a shower, a chocolate chip cookie, my wife’s smile, my sons, their families, my co-workers. These mini-meditations give space for a bit less worry, and an ounce more of strength to manage physical challenges.  Honor the caregivers, help the helpers.

Feb 08 2015
Love0

Adjusting to new chronic illness

By Advocate, Caregiver, Consumer, ePatient, Family man
Adjusting to new chronic illness involves moving away from traditional medical/doctors/health care system to controlling controllable stress and recalibrating function.  “Eventually, you adjust to a new normal,” says Lisa Copen, founder of Rest Ministries, Inc.  Controllable stress takes many forms – toxic relationships, fear, anxiety, impatience, sleeplessness…. Managing those stresses creates space and reserves to manage uncontrollable stress – grief, new meds, less abilities, etc. Getting help managing toxic relationships has out-sized impact.  Toxic relationships wear you down, drop by drop. Counseling can help here. Meditation and yoga pair well with impatience and anxiety.  Have fun: when I got my multiple sclerosis diagnosis I had to redouble my efforts to have fun – more clearly defining what having fun meant to me and including fun as part of everyday life at home and at work. Spending time with my honey and my family, playing music, reading, making a difference, mentoring. Recalibrating function – adjusting to the new you: Physical or occupational therapy can help to manage changing abilities to carry out activities of daily living (meals, elimination, movement, dressing, chores). Community services can help with transportation and family support, among other things. We often expect that the traditional medical/health care system should help with stress and function. That’s not their core business, they’re often not good at it. Those with new chronic illness need to look elsewhere and add to their health team. Right now, insurance doesn’t pay well or doesn’t pay at all for controlling controllable stress or recalibrating function. Maybe that will change as incentives move from fee for service to capitation (paying separately for each service to paying a set amount per person).