A new Parkinson’s diagnosis: the first months

If you’ve had puzzling symptoms for a long time, it can feel like a relief to understand what’s going on. Relief and fear can live side by side.

Grief is a natural reaction to a Parkinson’s diagnosis. It often comes in waves.

Parkinson’s changes over time, at a different pace for each person. What you read online about someone else may not be your path.

Some people want to tell everyone straight away. Others need time to absorb it first. Both are fine.

Doctors look for slowness of movement plus at least one other sign, such as a resting tremor, stiffness or balance problems.

A family doctor or internist often makes the first diagnosis. Many people also see a movement disorder specialist, a neurologist with extra training in Parkinson’s.

Brain scans and newer skin or spinal fluid tests can support a diagnosis in some cases, but they can’t always tell Parkinson’s apart from similar conditions.

Leads your Parkinson’s care. The Parkinson’s Foundation’s Global Care Network lists centers that offer team-based care.

Physical, occupational and speech therapies can help with walking, speech, tremor and stiffness, and coping with thinking changes.

Helps you keep doing daily tasks your way, and can suggest strategies for thinking changes.

Parkinson’s can make your voice quieter or flatter. A speech therapist can help.

Individual or family counseling can help you find ways to live as well as you can with Parkinson’s.

• Aerobic activity, like brisk walking or cycling
• Balance and agility
• Strength training
• Stretching

Biking, Tai Chi, yoga, Pilates, dance, weight training and non-contact boxing can all help. Many areas have classes made for Parkinson’s.

Talk with your doctor before starting a new program. A physical therapist can help you begin, especially if movement is already harder.

• “I’ve been diagnosed with Parkinson’s. I’m still learning what that means.”
• “It changes slowly for most people, and it’s different for everyone.”
• “What would help me most right now is…”

Young children need short, calm explanations, like “Grandpa’s brain makes his hands shake sometimes. It’s not catching.” Let them ask questions over time.

You may want to think about whether you need changes at work before deciding what to share. The Job Accommodation Network (JAN) gives free, confidential advice about accommodations and the ADA at (800) 526-7234.

Younger people often worry most about work and money. Planning early, and knowing about accommodations, can protect your options.

You may worry about keeping up with kids or how they’ll feel. Honest, simple conversations and shared family plans help everyone feel steadier.

If you think Parkinson’s may run in your family, ask your doctor about genetic testing. A genetic counselor can explain what results mean.

Support groups made up of people with Parkinson’s can offer advice and experience. Ask the helplines about groups for younger people.

Over time you might hand over some tasks, like finances or yard work. These changes can feel hard, so talk them through together.

You can search for Parkinson’s studies looking for volunteers at ClinicalTrials.gov. Taking part is always your choice.

Many people use the early years to put their wishes in writing while it feels calm. A legal aid office or lawyer can explain the options where you live.

Free answers about diagnosis, treatment, daily living and caregiving, plus referrals to local professionals and support groups. English and Spanish, Monday to Friday, 9 a.m. to 7 p.m. ET.

Information, support groups and local chapters across the country.

Free, confidential support, any time, if the diagnosis feels overwhelming or you have thoughts of suicide.

Parkinson’s is found worldwide, and many countries have national organizations. findahelpline.com lists emotional support lines by country.