Do It Now: Living Fully While Caregiving with Heather Butchen

Full analysis

Heather Butchen, a care partner for her husband Jeff who was diagnosed with early-onset Parkinson's disease at 51, shares what more than a decade of caregiving has taught her about staying organized, keeping active, traveling smart, and protecting her own wellbeing. The conversation is practical and candid — useful for anyone managing a progressive disease in a spouse or partner.

What was covered

• The diagnosis and its ripple effects. Jeff was diagnosed in 2013, when their children were 13 and 16. Heather describes the shift from privacy to going public after their daughter launched a fundraiser — "Dan, Shake, Donate" — through the Michael J. Fox Foundation, which accidentally announced Jeff's diagnosis to their whole town.
• The medical journal habit. Heather has kept a dedicated paper notebook for every doctor's appointment and support-group meeting since diagnosis. She credits those notes — tracking medication reactions, symptom changes, and doctor observations over years — with helping Jeff qualify for Deep Brain Stimulation (DBS) surgery when they eventually pursued it.
• DBS surgery. After 10-plus years and a tremor that had become severe enough to affect Jeff's confidence in public and his sleep, he underwent DBS about two years ago. Heather describes it as "life-changing" — his tremor stopped, sleep improved, and his willingness to socialize returned. She notes that not everyone qualifies; eligibility depends on symptom profile and disease history.
• The Sunflower Lanyard program. At airports, Jeff now sometimes wears a Sunflower Lanyard — a recognizable symbol for non-visible disabilities. Heather says it can be requested at the airport counter and allows the wearer to board early and signal a need for extra help without having to explain a condition that isn't outwardly obvious.
• Exercise strategies for a reluctant care partner. Jeff dislikes structured exercise. What has worked: a local boxing class designed specifically for Parkinson's patients (eye-hand coordination, social atmosphere, other men in the class), walking together, and the Peloton app at home. Heather mentions Rock Steady Boxing as a nationally known Parkinson's-specific program.
• Planning ahead for driving and housing. Heather and Jeff are already discussing one-floor living to eliminate stairs, spending more winters in a warmer climate, and self-driving cars (they tried a Waymo in Austin) as a future mobility solution when driving is no longer safe.
• Heather's own self-care. She schedules phone calls with friends during walks, attends Pilates classes, plays mahjong, and deliberately builds "white space" — unscheduled downtime — into her calendar. She describes the support group she and Jeff co-founded in 2014 (now called Parkinson's Body and Mind, meeting twice monthly on Zoom and once in person) as her most valuable ongoing resource.

Notable claims & predictions

• Heather Butchen on the medical journal: "I still have notebooks of things that I wrote down from all the doctors' appointments… even the medications that he's taken along the way — you kind of forget what was his reaction to that. I know the doctors keep all their notes too, but I literally have kept it like a journal." The implication: your own records can fill gaps that a clinical file misses, and may support future treatment decisions.
• Heather Butchen on DBS surgery: "It completely stopped his tremor… sleeping… I kind of refer to it as it reset his pockets. It's been life-changing — truly." She is careful to add: "You have to qualify for it… not everybody is eligible."
• Heather Butchen on travel timing: "When Jeff was first diagnosed, we did more active trips — Iceland, hiking. Now I would be more hesitant… worried about his balance or falling." Her practical rule: do the physically demanding travel early in a diagnosis, before the disease or aging limits what's possible.
• Heather Butchen on the care partner's mindset: "You can't shape their disease, but you can change moments." She frames this as a mental anchor — focus on what is within reach rather than fighting what isn't.
• Heather Butchen on sustainability: "He's at a stage right now where he's self-sufficient… but I think it's planning now — the driving situation, when he's not going to be able to drive or do things on his own." The implicit warning: address future logistics while the situation is still manageable.

Fact check

• DBS for Parkinson's described as "life-changing" for tremor. Accurate as a characterization of outcomes for well-selected patients. DBS is an established, FDA-approved treatment for Parkinson's that can significantly reduce tremor and improve quality of life, and Heather correctly notes that eligibility is not universal — it depends on symptom type, disease stage, and overall health. Her description is consistent with the clinical literature; the caveat about qualifying is important and she did include it.
• Sunflower Lanyard available at airport counters. The Hidden Disabilities Sunflower program is real and widely used at airports in the UK, Europe, Australia, and a growing number of U.S. airports. Availability at the counter varies by airport; some require advance registration online rather than on-the-spot pickup. Heather presents it as universally available "at the airport" — worth checking your specific airport's policy before relying on walk-up access.
• Rock Steady Boxing described as a Parkinson's-specific boxing program. Accurate. Rock Steady Boxing is a well-established nonprofit program with affiliated gyms across the country that offers non-contact boxing training specifically for people with Parkinson's disease.

No claims that fail scrutiny on the facts presented. The Sunflower Lanyard availability caveat is the one practical detail worth verifying in advance.

Why this matters for you

• If you are managing a spouse or partner with a progressive condition, the medical journal habit is actionable today. A chronological record of medications, reactions, symptoms, and doctor observations — in whatever format works for you — can inform future treatment decisions and fill gaps that clinic notes miss. Start one now rather than trying to reconstruct history later.
• DBS surgery is worth knowing about if a Parkinson's patient in your life has a severe and worsening tremor. It is not for everyone and requires formal evaluation for eligibility, but Heather's account suggests the conversation with a neurologist is worth having before symptoms become more limiting. Ask specifically about both DBS and Focused Ultrasound, which she mentions as a separate option.
• The Sunflower Lanyard is a low-effort tool for any non-visible disability at airports — Parkinson's, early dementia, hearing loss, anxiety — not just Parkinson's. Verify availability at your specific airport before departure rather than assuming walk-up access.
• The broader "do it now" travel and activity framework is directly relevant for anyone with a spouse or partner whose mobility or stamina is declining: the physically demanding trips and activities get harder to fit as disease or aging progresses. If there is something on the list, the time to plan it is earlier than feels necessary.