My mom was just diagnosed with Parkinson's. What do we do now?

Your first job: the first weeks

A Parkinson's diagnosis lands hard, but you have time. Nothing has to be decided today. A few things set up now shape how the next years go.

• Get to a movement disorder specialist, a neurologist with extra Parkinson's training. People who see one rather than a general doctor tend to do better, and a second opinion is normal.
• Help her start moving. Exercise is the closest thing to a treatment that slows the disease; about 2.5 hours a week is linked to slower decline. Ask for a physical therapy referral to get started safely.
• Build the medication routine from day one: exact drugs, exact times. Parkinson's pills work on a strict clock, and late doses bring symptoms back.
• Pick one family point person and start one simple record: the diagnosis, the medication schedule, and your running list of questions.

The diagnosis: things to consider

Parkinson's is a clinical diagnosis: there's no single blood test or scan, so the doctor goes on the exam and history (a scan called a DaTscan is sometimes used to clarify). Doctors describe it in stages, from mild and one-sided early on to needing more help later. Alongside the movement symptoms come non-motor ones (sleep, mood, constipation, loss of smell) that are just as real.

On treatment, levodopa is the mainstay and the most effective medicine; there are others, and there are later options like deep brain stimulation. When to start medication is a genuine decision the doctor makes with you, so it's fair to ask about the trade-offs. One thing to lock in early: Parkinson's medications must be given on time, every time. In the hospital, about three in four people with Parkinson's miss doses or get them late, which can set them back, so this is the family's job to guard.

Before you leave the appointment, ask about these

• The exact medication schedule, and what to do about a missed or late dose.
• Which medicines she should avoid, since some anti-nausea and antipsychotic drugs can badly worsen Parkinson's.
• A referral to physical therapy, and to speech therapy if voice or swallowing is affected.
• The Parkinson's Foundation's free Aware in Care kit, which keeps her meds on time if she is ever hospitalized.

The road ahead

Parkinson's is managed over years, and this is where your role really is. Here's the job, as a checklist.

Set up the home

• Falls are the biggest practical risk, so clear throw rugs and cords, add grab bars and good lighting, and keep walking paths clear. An occupational therapist can do a home-safety check.
• Set up the medication routine: a pill organizer, alarms, and one written schedule with exact times where the family can see it. That's the kind of thing Greenlue keeps in one place.

Sort the paperwork (while she still has capacity)

• A healthcare proxy, a financial power of attorney, and a HIPAA authorization (free forms: AARP, CaringInfo). Neurologists recommend doing this early, because Parkinson's can eventually affect thinking.
• Keep those, the diagnosis, and her records in one place the family can reach. That's what Greenlue holds, so there's no binder to carry around.

Know what to watch for

Here's what MedlinePlus (the NIH's health service) says to tell the provider about after a Parkinson's diagnosis:

These are general signs from a national source. Her care team may give you a different list for her, so go by what they tell you, and call 911 for any emergency, like a fall with injury or choking.

Her day to day

• Exercise is the closest thing to a disease-slower. Aiming for about 2.5 hours a week is linked to slower decline. The therapist sets the plan; the biggest help is that she keeps doing it.
• Protect the medication clock. Late or missed doses bring symptoms back within hours. Keep every neurology and therapy appointment.
• Watch mood. Depression and anxiety are common in Parkinson's and are treatable, so mention low mood early.
• Ask her team about constipation, dizziness on standing, and how meal timing affects her levodopa, rather than guessing.

What she'll need from you, and protecting yourself

• Rides, meals, help keeping the medication clock, and steady encouragement. Presence matters, so pick a rhythm you can sustain.
• Split roles with siblings: one on the medical side, one on paperwork, a shared calendar.
• Use FMLA if you work (up to 12 weeks, job-protected, a few hours at a time), and treat your own sleep as part of her care plan.
• As things progress, more help at home or a move to assisted living may make sense. Tour options before you're forced to choose.

Nearly all of it is coordination

Which is exactly what Greenlue carries with you:

Common questions