Navigating a new Parkinson’s diagnosis – Webinar notes

Navigating a new Parkinson’s diagnosis – Webinar notes

In late May, the Michael J. Fox Foundation (MJFF) offered a webinar on navigating a new Parkinson’s disease (PD) diagnosis, featuring a panel of speakers including a movement disorders specialist and individuals who have PD. They discussed common questions that one may have after a new PD diagnosis, how to get the best care, considerations around starting medication, and when to disclose the diagnosis to others. There was a question and answer session as well. We at Stanford Parkinson’s Community Outreach viewed the webinar and are sharing our notes.  

The speakers on the panel included:

  • Amy Amara, MD, PhD: Movement Disorder Specialist, Associate Professor of Neurology, UAB Medicine
  • Soania Mathur, MD: MJFF Patient Council Co-Chair. Diagnosed with PD in 1998 at age 27. Moderator of the presentation.
  • Eric Aquino: Advanced Emergency Medical Technician and Fox Insight participant. Diagnosed with PD in 2018 at age 40.
  • Bill Rasmussen: Founder, ESPN. MJFF Patient Council member. Diagnosed with PD in 2014 at age 81.

This webinar was recorded. You can register for free and view the recording here

If you have questions about the webinar, you can contact the MJFF at 800-708-7644 or via their online form.

One resource mentioned in the webinar is the MJFF Guide for People Newly Diagnosed with Parkinson’s. You can download a PDF of the guide here.

For additional terrific resources on a recent PD diagnosis–  including downloadable guides, links to online resources, and webinars and podcasts – see this page on the Stanford Parkinson’s Community Outreach website.

Now… on to our notes from the webinar.

– Lauren

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Navigating a new Parkinson’s diagnosis – Webinar notes

Presented by the Michael J. Fox Foundation

May 21, 2020

Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The presentation began with a review of the main symptoms of Parkinson’s disease (PD). The featured speakers shared their journey to receiving a PD diagnosis.

Eric Aquino is an Advanced Emergency Medical Technician (EMT) who was diagnosed with PD at age 40. Prior to his diagnosis, he was undergoing physical therapy (PT) for shoulder pain, when he and the physical therapist started noticing tremors in his right leg. Eventually, the tremor progressed into his right hand. His wife encouraged him to see a doctor to figure out what was going on, but the process was not straightforward; frustratingly, it took a year and a half for him to get officially diagnosed with PD. Once he received the diagnosis, he felt ready to move forward with treatment. Eric himself didn’t have a lot of questions initially, but his wife had many! Eventually, he wanted to share his experiences with others and spread awareness of PD, so he started a podcast, called Trembling EMT: My Parkinson’s Journey and later, founded a nonprofit, the Gray Strong Foundation, to help those with PD move forward with their disease.

Bill Rasmussen is one of the founders of the cable sports channel ESPN and was diagnosed with PD at age 81. About a year after his wife passed away in 2011, he noticed a tremor in his left hand and thought perhaps he had pulled a muscle. The tremor persisted, and in 2014 he saw his primary care doctor, who suspected it was essential tremor and suggested he return to the clinic in two months. At that point, she referred him to see a neurologist. Bill’s daughter is a radiation oncology nurse and wanted to come with him. After some imaging, they saw the neurologist and Bill received a diagnosis of PD. The diagnosis came as a relief to Bill’s daughter, who had been terrified that he might have cancer.

He started exercising and participating in rehabilitation therapies including speech therapy (ST), occupational therapy (OT), and physical therapy (PT). He also started taking levodopa, which has been very helpful. He doesn’t know if it’s partly just good fortune, or due to the exercise, but his symptoms haven’t yet progressed much in the last few years. Bill tries to keep a positive attitude and do the activities that he can. Recognizing and facing the disease has been helpful for him; he feels life with PD is not quite a normal life but that there are still many activities he is able to enjoy.

Common questions from people newly-diagnosed with PD

Those who have recently received a PD diagnosis often have the following questions, which were discussed in more detail by the presenters:

  • What is going to happen to me?
  • Where can I get the “best” care?
  • What about medication?
  • What else can I do?
  • Is there a “right” time to tell others?

What is going to happen to me?

Remember that PD changes gradually over time; while progression varies from person to person, it is not a rapidly-progressing illness. The saying goes, “If you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s!” Each individual’s path is unique; symptoms, responses to treatment, and speed of progression can vary significantly. We cannot predict the future, but some features can indicate how quickly or slowly the disease may be disabling. For instance, having balance issues early in the disease, which often lead to falls, can be more disabling early in the disease as opposed to those whose main symptom at first may be tremor.

Where can I get the “best” care?

Many people receive their PD diagnosis from a general neurologist, but it is a good idea to also see a movement disorders specialist, if possible. A movement disorders specialist is a neurologist who has additional training – typically a 2-year fellowship – in diseases like PD. This gives them a lot of experience specifically with PD, which is the most common movement disorder, and additional familiarity with its treatment and care. That said, there are primary care doctors and general neurologists who are excellent caretakers of PD patients!

Having a good rapport with your doctor is essential. If you don’t have confidence in the care you are receiving or your diagnosis, get a second opinion. There are no lab tests, imaging studies, or other measures that can definitively diagnose PD, and, as illustrated by Eric’s experience, it is not always a straightforward path to receiving an accurate diagnosis.

The speakers recommended assembling a team of professionals who can help you manage the many different aspects of PD. These might include a movement disorders specialist, a nurse, a primary care doctor, and rehab specialists such as ST, OT, and PT. Sometimes a psychiatrist can be helpful too, if mood is affected. Ideally, the physician who diagnosed you and is seeing you for PD is responsible for helping you put the new team together, by providing referrals and making suggestions.

Eric’s team consists of a movement disorders specialist, OT, PT, and a urologist. He has a cardiologist who has conferred with his movement disorders specialist regarding medications. The team collaborates with each other at Eric’s request, and he feels this has improved his overall care.  

Bill’s team includes his daughter, who is a nurse, and his neurologist, who, unfortunately for him, is retiring. Currently he is in between specialists but will soon transfer his care to the hospital where his daughter works, which has two movement disorders specialists.

What about medication?

The goal of medications in PD is to ease the symptoms of the disease, to improve your quality of life and permit you to keep doing what you want or need to do. Most of the drugs available seek to increase the amount of dopamine available to your brain, to replace what has been lost. No available treatments have been shown to slow the actual progression of PD, but there are many clinical trials ongoing to evaluate possible new treatments.

Remember that all medications have pros, cons, and potential limits. Some medications work well for one individual and not for another. When to start medication, and which medication to try, is a personal decision to discuss with your physician.

What else can I do?

There are other measures you can take to help keep yourself healthy as long as possible:

  • Exercise regularly
  • Eat a healthy diet
  • Decrease stress, as possible
  • Build your support network
  • Participate in research

Those who are early in their PD journey can make particularly valuable contributions to new understandings of and treatments for PD by participating in research.

Bill also suggested keeping your brain active and learning a little something new every day. Eric has found it rewarding to become involved with others and give back by founding a local nonprofit to help those with PD in his local community.  He also reinforced that exercise is so crucial and beneficial for anyone with PD, no matter what stage.

Is there a “right” time to tell others?

It can be a challenge to decide who to tell, when to tell them, and how to broach the subject.

Your personal circumstances will help inform these decisions of whether to keep your diagnosis secret or share. How and when to share is a personal milestone that is unique to each individual.

Bill decided to share his diagnosis publicly in 2019 with an ESPN blog post. He feels that if even one person reads his account and feels empowered to see a doctor about their symptoms, it will have been worth it. You can read his statement here.

Initially, Eric only told his family about his PD. Over time, he slowly started letting other people in his life know about the diagnosis, but sometimes ran into difficulties because of how he disclosed it. Many people had already noticed his tremor over time. In certain situations, his tremor would be exacerbated, and he would bluntly state that he has PD. But without context, the person he was talking with sometimes thought he was joking about his tremor, before realizing that he was serious. His sister suggested he start his podcast to share his journey, which turned into a wonderful project for him. You can check out his podcast, Trembling EMT, here.

The MJFF offers two free, downloadable guides that cover some additional considerations about sharing your PD diagnosis in the workplace:

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Question and Answer Session

Q: Should I consider genetic testing if I have a family member who has PD?

A: It’s a very individual decision; it’s a good idea to speak with a neurologist or genetic counselor if you are concerned, but it’s not a strongly heritable illness aside from rare genetic mutations.

Q: What should I expect as far as prognosis?

A: PD is a very heterogeneous disease; each patient is a little different. Age, gender, and comorbidities vary, but also the PD symptoms themselves! Some have tremor, some don’t. Some start with shoulder issues. Some struggle most with imbalance.

In general, it’s a slowly progressing disease. If you look back at how much you’ve change in the last year or so, that’s likely the speed of progression you’ll continue to have going forward. Starting medication can end up feeling like you’re turning back the clock, though it is just treating the symptoms, not actually slowing the progression of the disease.

Q: Right now, it may be hard for people who are sheltering-in-place or practicing social distancing to participate in exercise or get out of the home. What do you recommend for this moment in time?

A: There are lots of online exercise programs you can try, often offering workouts that can be done at home, without any equipment. Stretching is extremely important for PD as well. A walk in the sunshine is also beneficial. Also remember to maintain a healthy diet, keep your stress down, and find ways to stay virtually connected with people.

Q: How often should I see my PD physician?

A: varies person to person; some prefer only once a year if they feel they’re doing well. Others need to be seen more often as the disease progresses or they have more symptoms. Every 3 to 6 months is most typical , but advocate for what you feel you need.

Q: What one piece of advice would you give to someone who is newly diagnosed with PD?

A: Each speaker provided their advice:

  • Eric: Build your team early and quickly – in terms of professionals but also in terms of personal support – family & friends. Talk to them, be honest with them about what is going on with you.
  • Dr. Amara: Get information, learn everything you can. But keep in mind that not everything that works for others will work for you. It’s okay to grieve sometimes – it’s a big change.
  • Bill: Try to think of this as simply another piece of who you are, not something that defines you.