I am newly diagnosed with Parkinson’s, now what?

Hello. I’m glad you’re here.
Being diagnosed with Parkinson’s is life-changing and life-altering — not life-ending. You can still have a productive, active, full life with Parkinson’s.

You’ve probably already started asking: When did this begin? Did I do something wrong? Why me? Am I going to get fired? Will my partner stay? Am I going to die?

Those are the questions nearly everyone thinks about early on. You’re normal.

WHEN DID PARKINSON’S BEGIN?

Parkinson’s often starts 5–10 years before diagnosis. Classic motor symptoms usually don’t show up until there’s been substantial dopamine loss (roughly ~50–60% of the neurons lost and ~70–80% of dopamine depleted). In other words: it’s been brewing quietly.

DID I DO SOMETHING WRONG?

No. Parkinson’s is an equal-opportunity disease. Some people are genetically predisposed; environmental exposures and aging biology can raise risk; and there’s some plain bad luck. It doesn’t care where you live, your gender, ethnicity, religion, or how healthy you are — you didn’t cause this.

WHY ME?

It’s almost never one thing or your fault. PD tends to happen when several risks stack up — genes, environment, aging — until vulnerable dopamine neurons can’t keep up. Think many small sparks landing on a forest that’s drier with age.

AM I GOING TO BE FIRED FROM MY JOB?

You shouldn’t be fired because you have Parkinson’s. You don’t have to disclose until you’re ready — it’s your story. Most countries protect workers with disabilities and require reasonable accommodations unless it causes undue hardship.

  • USA: Americans with Disabilities Act (ADA)

  • UK: Equality Act 2010

  • EU: Employment Equality Directive

  • Canada: Human rights laws impose a duty to accommodate

  • Also strong protections in Australia, New Zealand, India, South Africa, and many nations that have ratified the UN CRPD.

WILL MY PARTNER STICK WITH ME?

Many partners do stay — not because it’s easy, but because the relationship evolves. What changes most isn’t love; it’s the job description of being together. The couples who do well treat Parkinson’s as “the third thing in the room,” not the definition of either person.

Fear (yours and theirs) is normal — usually about money, intimacy, energy, roles, identity. Name the specific fear and it shrinks. You won’t keep everything the same, but you can keep it yours: friendship, humor, tiny rituals, shared purpose — plus outside help sooner than you think.

AM I GOING TO DIE? WILL IT SHORTEN MY LIFE?

Parkinson’s usually doesn’t directly cause death, but it can shorten life a bit through complications (most often pneumonia after swallowing issues, serious falls, or advanced frailty). On average, mortality risk is modestly higher than the general population, but many people live a long time with PD — especially with good care and planning.

What helps most: regular exercise, fall prevention, swallow/breathing safety (including vaccines), treating mood and sleep, and a medication/therapy plan that keeps you moving and independent.

This is the beginning of your journey. Be kind to yourself. Give yourself grace. Some days you’ll forget you have PD; other days you’ll swear the diagnosis is wrong. That’s normal, too.

Below are 12 starter topics to explore followed by links to Parkinson’s Resources—don’t try to swallow them in one sitting. Parkinson’s is an elephant; you eat it one bite at a time.

If you ever have any questions or comments please feel free to email me directly.

Larry

Larry Gifford
President, PD Avengers
Larry@PDAvengers.com
Diagnosed 2017

1) Give yourself time and process what you’re feeling

You’ve probably had a lot of different thoughts and emotions since the diagnosis hit.
Shock, relief (in a weird way—you now have a name for things), confusion, worry.

That’s completely normal.

It’s okay to slow down for a moment, reflect, talk with people you trust. Recognizing how you feel is as important as anything else. Here are three videos made specifically for newly diagnosed people with Parkinson’s (PwP).

Parkinson Foundation

Davis Phinney Foundation

Parkinson’s Australia

2. What is Parkinson’s

What is Parkinson’s disease (PD)?
Parkinson’s is a brain disorder in which dopamine-making cells gradually stop working or die. With less dopamine, the brain’s “traffic lights” for movement start to fail—signals turn late or out of sync—so tremor, slowness, stiffness, and balance issues show up. PD also brings non-movement symptoms like constipation, sleep and mood changes, pain, and memory or thinking problems. It’s lifelong and progressive, but the pace is different for everyone.

Everyone’s course is different.
Symptoms, timing, and severity vary widely. Neither you nor your clinician can predict exactly which symptoms you’ll have, when they’ll arrive, or how strong they’ll be.

How many people are affected?
Roughly 1.0–1.1 million people in the U.S. live with PD (about 90,000 newly diagnosed each year), and over 10–12 million people worldwide.

After diagnosis, the first question is often “Why me?” For most people, we don’t know—Parkinson’s is idiopathic. The best current view: it’s a mix of influences. Picture a slider with genes on one end and the environment on the other; most people land somewhere in between. Age adds weight to the system. Scientists are zeroing in on triggers and the cellular chain reactions they spark—knowledge that could lead to treatments that slow, stop, or even prevent PD.

3) Causes of Parkinson's disease

  • Genetics

  • A minority of cases (<10%)are driven by high-impact variants (e.g., LRRK2, GBA, SNCA, PRKN, PINK1). These raise risk but aren’t fate—many carriers never develop PD. Big data and reviews continue to refine how much each gene contributes.

Quick take: Genes load the dice; they don’t roll them.

  • Environment

  • Evidence links certain pesticides, herbicides, chlorinated solvents like trichloroethylene (TCE)/perchloroethylene (PCE), and head injury with higher PD risk. A historical “proof of principle”: the street-drug contaminant MPTP caused rapid, irreversible parkinsonism. Air pollution is under active study; some analyses find signals, others are mixed.

Quick take: What touches your brain and body can tilt the odds.

  • Aging

  • Age is the #1 risk factor. As we get older, cells accumulate wear and tear, and gene activity shifts. Those changes can light the fuse on the cellular stress and inflammation that set PD in motion. With an aging population, total cases are projected to climb.

Quick take: Time stresses the system.

  • Inside the cells: where these roads meet

  • Most roads lead to a few stressed systems—α-synuclein clumps, faltering mitochondria, jammed lysosome/autophagy cleanup, and smoldering neuroinflammation. Together they behave like a slow-moving forest fire: small sparks spread, the underbrush dries, and dopamine neurons are the trees that burn. We can survey the burn scar, but the arsonist—the exact triggers and their order—remains under investigation.

  • The Combo Punch

  • Parkinson’s usually isn’t one cause—it’s several causes interacting. Not everyone with a risky gene gets PD. Not everyone exposed to a toxin does either. The intersection—genes × environment × aging—is where risk often materializes. Researchers (including teams funded by the Michael J. Fox Foundation) are mapping those intersections and the downstream biology (like inflammation and cellular stress) to find points where we can intervene.

Bottom line: PD is a network problem. The more we understand the network, the better we can cut the wires.

4)Build a knowledgeable care team

Core Clinical Crew (start here)

  • Make sure you have a neurologist, and ideally a movement­ disorder specialist also known as an “MDS”—
    a neurologist with extra training in PD—involved, because PD is complex and nuanced.
    Use this tool to find an MDS near you.

  • Primary Care Physician (PCP) – coordinates everything else (vaccines, heart, bones, labs).

  • PD Nurse / Nurse Practitioner – triage, med adjustments, side-effect checks, real-world coaching.

  • If you aren’t already on a first name basis with your Pharmacist—there’s no better time than the present. You can count on your Pharmacist for advice on meds timing, interactions (especially with antidepressants, antipsychotics, nausea meds, supplements).

Rehab & Function (build early)

  • Physical Therapist (PT) – gait, balance, fall-proofing, exercise plan; look for PD programs (e.g., PWR!, LSVT BIG).

  • Occupational Therapist (OT) – energy conservation, hand skills, home/work setup, driving ergonomics.

  • Speech-Language Pathologist (SLP) – voice, speech clarity, swallowing; PD programs (e.g., LSVT LOUD, SPEAK OUT!).

  • Exercise Pro/Coach – PD-aware trainer for cardio, power, agility, and flexibility.

Mind, Mood, Cognition

  • Psychiatrist / Neurologist comfortable with PD meds – anxiety, depression, sleep, impulse control issues.

  • Psychologist / Counselor – coping skills, CBT, couples/family support.

  • Neuropsychologist (baseline) – memory/attention profile to track change over time.

Lived Experience & Navigation

  • Care Partner – true teammate in decisions and daily routines.

  • Peer Mentor / Support Group Leader – practical tips, motivation, reality checks.

  • Social Worker / Navigator – benefits, transportation, equipment, community programs.

Common “As-Needed” Specialists

  • Sleep Medicine – insomnia, REM sleep behavior disorder.

  • Gastroenterologist – constipation, gastroparesis, med absorption.

  • Urologist – urgency, frequency, nocturia.

  • Cardiology / BP Specialist – dizziness, orthostatic hypotension.

  • Dermatology – melanoma screening (PD has a known association).

  • Ophthalmology / Neuro-optometry – double vision, contrast sensitivity.

  • Dentist familiar with PD – saliva, dry mouth, dental access.

  • DBS/Advanced Therapies Team – for later consideration (DBS, LCIG/infusions, focused ultrasound).

Quick setup (first 90 days)

  1. Anchor with an MDS; add PD nurse contact.

  2. Baseline rehab evals (PT/OT/SLP) + tailored exercise plan.

  3. Baseline mood/cognition screen (PHQ-9, GAD-7; consider neuropsych).

  4. Safety sweep (falls, driving, home hazards, med box/timing).

  5. Care partner + social work meeting: roles, respite, resources.

  6. Pharmacist review of all meds/supplements for interactions and timing.

Pro tips

  • Timing is medicine. Carbidopa/levodopa works best on schedule; teach everyone the timing rules. Take Levadopa on time, every time—be vigilant.

  • Document early. Symptom log, med effects, sleep, and exercise—helps your MDS tune the plan.

  • Build habits now. Regular exercise, sleep hygiene, constipation plan, mood check-ins.

  • Keep it human. A small, responsive team beats a long, uncoordinated list.

5) Educate yourself — intentionally

The more you know about your diagnosis, the more empowered you’ll feel. Some ideas:

  • Read up from reliable sources: for example the Parkinson’s 360 from the Michael J Fox
    Foundation for Parkinson’s Research and the Parkinson’s Foundation (PF)
    “Newly Diagnosed Guide” has steps like defining goals, creating healthy habits,
    being active, finding a PD specialist.

  • Read the book The Parkinson Plan by Ray Dorsey, MD and Michael Okun, MD

  • Listen to podcasts / Read blogs - here is a link to a bunch of ‘em.

  • Explore your symptoms: early understanding of what your body is doing + what may change helps you feel more in control.

  • Make a list of questions for your doctor: e.g., “How is my disease likely to progress?” “What should I track or monitor?” “What non-motor symptoms should I be aware of?” (things like sleep, mood, cognition) From Stanford Medicine site: “Questions to ask your doctor about Parkinson’s disease” is a good resource.

Having knowledge doesn’t mean you’ll have all the answers—but you’ll know what to ask.

6) Get moving — build exercise into your life now

One of the best things newly diagnosed folks can do is exercise, and I mean regularly and purposefully.

Personal experience + research both support this.

Exercise helps maintain mobility, strength, balance, mood and quality of life.
Since you likely already have hobbies, you might consider adding:

  • Regular walking (with pace) or cycling

  • Strength training (leg, core, arms)

  • Balance / flexibility work (yoga, tai chi)

You might check with a physio who has PD experience to customize something. (Neuro-Physio or Neurologic Physical Therapist).

Here’s a tool to find a physical therapist in the United States.

Here is a free exercise and wellness portal with free exercise videos and virtual classes.

7) Address lifestyle factors and non-motor symptoms

PD involves far more than just tremor or movement issues. Things like mood changes, sleep problems, digestion, cognition can appear. Some actionable items:

  • Sleep: Try to maintain good sleep hygiene; sleep quality affects many PD symptoms.

  • Nutrition: Regular healthy diet, fibre (for digestion), perhaps talk to a dietitian about protein timing (if/when medications start).

  • Mood and mental health: Allow yourself to talk about the diagnosis, lean on support. Depression, anxiety and apathy are symptoms of Parkinson’s not just a reaction to the diagnosis.

  • Social support: Find your tribe, connect with peers, share your story, and listen to others’ — it can help a lot.

8) Set goals & build your personal ‘plan’

Some ideas:

  • What do you want your quality of life to look like in 1 year? 5 years?

  • How will you keep doing the things you love? Are there adjustments or supports you’ll build in?

  • What are your red flags? (When do you need to see the neurologist earlier, try new therapies, etc.)
    The newly‐diagnosed resources emphasise this as step one.

9) Explore research and trials

Ask your neurologist about clinical trials or research studies you’re eligible for. Being newly diagnosed gives you opportunity to participate before major progression. Often, you will need to have NOT started taking medication to qualify for research studies.

If you want to participate from home; sign up for Fox Insight (A quarterly survey) and if you are interested in find trials near where you live sign up for Fox Trial Finder

10) Practical administrative things to take care of

Some of the more mundane—but important—items:

  • Ensure you’ve got your medical records directed to the right specialists

  • Ensure you have medication coverage / pharmacy access if you start meds

  • Driving and activity: While many people keep driving after diagnosis, you may want to evaluate your reflexes, judgement, fatigue and discuss with your doctor when appropriate.

  • Financial/insurance planning: because PD is progressive, having legal, financial, care plans in place early is wise.

11) Accept what you can't control—focus on what you can

This is perhaps the hardest but most freeing: there’s no current cure for PD. But: You can affect how you live with it, how you adapt, how you stay active.

12) Keep monitoring, revisiting & adapting

Your journey with PD will likely have stages. What you do now might need to evolve later. So:

  • Regular follow-ups with your neurologist/specialist.

  • Track changes: movement, non­motor, mood, cognition, function. Keep a journal for Parkinson’s symptoms, events, and changes.

  • Be ready to adapt therapies, lifestyle, perhaps devices or advanced options. Research says progression is variable—no one “average” path.

LINKS TO PARKINSON’S INFORMATION

APDA (American Parkinson’s Disease Association) can quickly connect someone newly diagnosed to clear education, local support groups and exercise classes, referrals, and a national helpline at 800-223-2732.

Cochrane (Plain-language summaries): Exercise works; different types help different things—these reviews are gold for “why exercise” slides.

Davis Phinney Foundation: Helping people with Parkinson’s live well today.

Medline Plus Plain-language PD hub that points to vetted links.

Michael J. Fox Foundation (Parkinson’s IQ + You / Parkinson’s 360 / Ask the MD) Crisp explainers, videos, and printable guides that meet people where they are.

National Institute of Neurological Disorders and Stroke NINDS (NIH) Straightforward overviews, FAQs, and a printable booklet.

NHS (UK) The National Health Service (NHS) offers a comprehensive resource on Parkinson’s disease — including diagnosis, treatment (such as medication, physiotherapy and occupational therapy) and living-well advice — helping people with the condition monitor and manage symptoms in the UK.

NICE Guide (UK) Diagnosis, meds, and multidisciplinary care—useful when advocating with your clinic.

Parkinson Australia If you or someone you know has just been diagnosed with Parkinson's, we're here to connect you to the information you need to live well. Parkinson’s info-line 1800 644 189 Information Hub

Parkinson Canada: Publications, webinars, and practical supports (national perspective). Parkinson’s support hotline 1-888-664-1974

Parkinson’s Europe Pan-European info you can share with family abroad.

Parkinson’s Foundation (US): Symptom guides, hospital safety tools, and care-partner resources + helpline
1-800-4PD-INFO (1-800-473-4636)

Parkinson New Zealand Parkinson’s is a progressive neurodegenerative condition which impacts each person differently. Although there is no cure, treatment and information are available. Hotline 0800 473 4636

Parkinson’s UK If you or someone close to you has been diagnosed with Parkinson's, this page shows what you need to know. PD Helpline 0808 800 0303

PD Avengers (Global Alliance to End Parkinson’s Disease) helps someone newly diagnosed plug into a worldwide community, practical education, advocacy campaigns, and peer connections through webinars, toolkits, and partner referrals.

PMD Alliance (Parkinson & Movement Disorder Alliance) is a U.S. nonprofit that delivers practical education, community programs, and support—online and in person—for people living with Parkinson’s and other movement disorders, their care partners, and clinicians.

Michael J. Fox Foundation (Parkinson’s IQ + You / Parkinson’s 360 / Ask the MD) Crisp explainers, videos, and printable guides that meet people where they are.