Twitchy Woman: My Adventures with Parkinson's

If you suspect that you have Parkinson’s, knowing for certain will be much better than uncertainty.

GLENNA WOTTON ATWOOD

Several weeks ago, I wrote about my friend who could not get in to see a Movement Disorders Specialist for 2 years. She has an appointment in a few weeks with a neurologist and asked me what questions should she ask the neurologist. I wrote a “cheat sheet” for her with a lot information about what to expect at the first visit and what she should ask her doctor. I have had several more requests in the last week, so I am happy to give it to you now. It is a work in progress and will be accessable on my website.

Do You Think You Have Parkinson’s Disease?

Here is some important information for you to have before you see a Neurologist or Movement Disorders Specialist.

Your first visit to the Neurologist

You are nervous and don’t know what questions you should ask when you meet with your neurologist or Movement Disorders Specialist for the first time.  It can be an overwhelming experience.  Are you going alone?  Bringing someone with you who can help ask questions?  There are so many things that can differentiate between the tremor you have that could be Parkinson’s or a totally different diagnosis. 

Make a list

Write down a list of your symptoms and questions. It is very easy to forget things when you are seeing the doctor.

Start by telling your doctor which of the following symptoms you have that could be related to PD:

1. Insomnia – this often starts years before anything else is noticed.  For most people, waking in the middle of the night and not being able to get back to sleep is the problem.
2. Daytime Fatigue
3. Constipation
4. Stiffness
5. Lack of arm swing on affected side
6. Gait problems – tripping, walking unevenly
7. Loss of Smell
8. Soft voice – do people complain that they can’t hear you?
9. Balance problems
10. Small handwriting

A combination of several of these symptoms may point towards a PD diagnosis.

You should also tell your doctor if you have a family history of Parkinson’s. There are several gene mutationtions that can increase your chances of having PD.

Have you been exposed to pesticides such as Paraquat or TCE which are known to cause Parkinson’s and other neurological diseases.?

Medications: 

Make sure you bring a list of any medications and supplements you are taking.  Some may have side effects that mimic Parkinson’s

Physical Exam

Your doctor will do a physical exam which can include :

1. Walk up and down the hallway to check your gait.
2. Pull you backwards to check your balance
3. Stomp one heel repeatedly, then the other
4. Open and close one hand as fast as you can, then the other
5. Tap your thumb and forefinger on one hand, then the other
6. Check for muscle stiffness
7. Sometimes they will ask you to count backwards by ‘x’ while doing one of the above
8. Write something to see if your handwriting decreases in size as you continue writing.
9. Check for a decreased blink rate

Often, a Neurologist or Movement Disorders Specialist can make a diagnosis based on the physical exam.

Some other tests

Your doctor may want to order tests to confirm the diagnosis.  A brain MRI is usually inconclusive in early PD and is not ordered very often.

Sometimes the neurologist will put you on a very low dose of Carbidopa/Levadopa (Sinimet) for a few days.  IF your symptoms improve, then you most likely have Parkinson’s Disease.  If there is no change, your doctor may want to order other tests.

One test that is used often is the DaTscan. In this test, a radioactive tracer, Ioflupane I, also known as DaTscan, is injected into the blood, where it circulates around the body and makes its way into the brain. It attaches itself to the dopamine transporter, a molecule found on dopamine neurons. Several hours after the tracer has been injected, special imaging equipment scans the head to detect the presence of DaTscan.  If your physical test above confirms a diagnosis of PD, the DaTscan is not necessary for diagnosis.

A Skin Test:  The Syn-One Test aims to help doctors confirm or rule out the diagnosis. The test, which takes about 15 minutes, involves taking three small skin samples from the patient. These skin biopsies then go to a lab and are evaluated for a specific protein (phosphorylated alpha-synuclein) found in individuals with Parkinson’s disease.

There are more less invasive tests coming to market as I write this. Watch for more information about these on Parkinson’s news sources.

Questions to Ask

1. If the diagnosis is Parkinson’s Disease, what medications should you start now? What are possible side effects? Can you wait to take the medications?
2. How much exercise is necessary? Can the doctor recommend PD specific exercies classes for you?
3. Should you make changes in your diet?
4. If there is a history of Parkinson’s in your family, should you be tested for the Parkinson genes? If you have a genetic form of PD, it may affect how your Parkinson’s is treated.

Local Resources

Ask your doctor for recommendations for local resources. These can include any of the following:

1. Parkinson’s Nurse:  some neurologists have a nurse who becomes your care coordinator.  Unfortunately this service is not available everywhere.
2. Support groups
3. Exercise classes for PD such as boxing, dance, yoga
4. Physical Therapists who specialize in PD, some doctors request a baseline evaluation to see how you are physically.   They can also help with gait and balance issues.
5. Occupational Therapists can come to your home and do an assessment to see if you need to make any changes in your home.
6. Speech Therapists for soft speech, swallowing problems and more.
7. Peer Mentor: Someone with Parkinson’s who can help you get through the first few months. Twitchy Woman offers a Peer Support program for women. Other organizations also offer buddy programs.

National Resources

1. Parkinson Foundation:  New to Parkinson’s -watch video.  Order a free Aware in Care Kit
2. Fox Foundation – Resources for people newly diagnosed.  Your role in research (clinical trial info) and Parkinson’s 360
3. Davis Phinney Foundation – A Primer on Parkinson’s for the Newly Diagnosed
4. PMD Alliance – check out their local resources listings, many videos available on all things Parkinson’s.
5. Brian Grant Foundation  a lot of good information on nutrition and exercise for PD.
6. APDA – American Parkinson’s Disease Association – good information about Parkinson’s.
7. PD Avengers – Parkinson’s advocacy

If you live in another country, look for a Parkinson’s organization where you live.

For our Spanish Speaking Friends

The HOPE PALS coalition brings together Parkinson’s organizations in the US and in Spain to provide a wide variety of resources for Hispanics with Parkinson’s and their families

• Michael J Fox Foundation: https://www.michaeljfox.org/conociendo-la-enfermedad-de-parkinson
• Parkinson’s Foundation: https://www.parkinson.org/espanol/recursos-y-apoyo
• Muhammad Ali Parkinson Center https://www.barrowneuro.org/resource/programas-en-espanol-enfermedad-de-parkinson/
• Davis Phinney Foundation. https://davisphinneyfoundation.org/en-espanol/recursos-de-parkinson/
• Parkinson and Movement Disorders Alliance  https://www.pmdalliance.org/sabes/
• American Parkinson’s Disease Association: https://www.apdaparkinson.org/resources-support/en-espanol/
• Federación Española de Parkinson: https://www.esparkinson.e

Recommended Reading

Twitchy Woman, My Adventures with Parkinson’s This should be first on every list.

Parkinson’s Life    A good website from the UK. Run by Parkinson’s Europe

Parkinson’s News Today – another good source of info

Every Victory Counts Manual by the Davis Phinney Foundation.

The New Parkinson’s Disease Treatment Book by Dr. J Eric Ahlskog.

Parkinson’s 360  A Guide for Those Navigating Parkinson’s Disease, Fox Foundation

Brain Storms by Jon Palfreman.  Written by a science journalist who has Parkinson’s.  One of the best books I have read about PD.

Dr. Sarah King at Invigorate PT – A letter to my clients, things I wish I could have told you on the day you were diagnosed.

Dr. Claire McLean – Getting started with a PD Exercise program.

PD Self Self-efficacy Learning Program written by a woman with Parkinson’s.

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Coming October 29, 2023

Comedy writer Paul Mayhew-Archer will be performing his hit show from the World Parkinson Congress live with Twitchy Woman

In 2010 British comedy writer Mayhew-Archer was told he had PD and decided to find it funny.   If you’re worried or in need of a laugh, join us.   

When: October 29 @ 1:00 PM ET, 10 AM

Where: On Zoom – Reservations necessary

How much: FREE, but donations are appreciated to cover our costs*

Make your reservation through Eventbrite (if you have already made a reservation through Zoom, please register again with Eventbrite, thank you)

This program is open to everyone and will not be recorded

* Thank you to our fiscal sponsor, The Parkinson’s Wellness Fund, which enables Twitchy Woman to receive your tax-deductible donations.