

This fall PMD Alliance hosted a mini webinar series on Pre-habilitating Parkinson’s Disease. Pre-habilitating means proactively addressing potential issues rather than reacting after they happen. This miniseries seeks to provide you with the tools to give you more control and a greater sense of peace when it comes to imagining the future – and it is a good one!
Part I: Proactive PD Management was presented on September 29. Speakers were Ramon Gil, MD, and Claire McLean, DPT. I did not attend the webinar, but here is the gist of what the speakers talked about.
Dr. Gil is passionate about treating the whole person with PD, motor, non-motor, and emotional symptoms from the time of diagnosis. He says if a neurologist tells you you ‘just’ have a slight tremor that doesn’t need to be treated, fire him/her! A good neurologist will ask if that tremor causes you any embarrassment or difficulty (you may have stopped playing cards so your friends don’t see your hands shake) and if any non-motor symptoms cause you discomfort. Without asking, the neurologist wouldn’t know you have severe constipation, joint pain, etc.
Ms. McLean spoke about the benefit of consulting with a therapist at diagnosis to learn how to delay eventual gait and speech changes. This involves making a care plan that includes exercise you enjoy, that fits into your lifestyle, and that allows you to continue to have the strength and balance to do the things you love. Your physical goal may be something as simple as picking up your grandchildren.
And she wants everyone to know that you can start at any age by doing what you can do physically and working your way up to doing more and getting stronger. If you can only do 3 minutes on the elyptical the first day, add a minute every time you go to the gym. Eventually, you will be able to do 15-30 minutes. This is often easier with the guidance of a physical therapist or personal trainer, but always doing some exercise is better than doing none.
My notes today are on Part II: Mind/Body/Spirit. Ramon Gil, MD, and Jill Scapillini, PhD, spoke about how sharing emotional, spiritual, and social aspects of your life can help you and your doctor fit PD treatment around your life instead of fitting your life around PD treatment, while strengthening the doctor-patient relationship.
To help think through your priorities in navigating your Parkinson’s journey and share your goals with your care partners and medical team, PMD Alliance provided three handouts.
1. Answering questions in the Parkinson’s Well-Balanced Life Journal helps you think through your intensions, goals, and what motivates you.
2. After completing the Well-Balanced Life Journal, you can summarize your goals to easily share them with your care partners and medical team using the 1-page Snapshot Tool.
3. Finally, fill out this quick Proactive PD Management Self-Check to see if you are working as an efficient team with your care partners and medical team.
A recording of this miniseries on Pre-habilitating Parkinson’s can be accessed on the PMD Alliance YouTube channel:
Part I: Proactive PD Management
There was a lot of talk in Part II about treating anxiety and depression. About half of people diagnosed with Parkinson’s disease were diagnosed with anxiety and/or depression years earlier. The Stanford Parkinson’s Community Outreach Program has more information on our website about anxiety and depression in Parkinson’s Disease at:
… and a whole section about Living with Parkinson’s, including blogs about PD, staying independent with PD, families and PD, symptom trackers, and more at:
And now, on with my notes…
– Denise
Pre-habilitating Parkinson’s, Part II: Mind/Body/Spirit
Webinar Host: PMD Alliance
Webinar Date: October 13, 2021
Moderator: Anissa Mitchell, PMD Alliance
Speakers: Ramon Gil, MDJill Scarpellini, PhD
Summary by: Denise Dagan, Stanford Parkinson’s Community Outreach
In Part I of this Pre-habilitating Parkinson’s webinar miniseries the focus was on being proactive in understanding the disease, managing symptoms, and deciding what’s meaningful to you as you plan management of the physical aspects of the disease, like what leisure activities are most important to you.
In Part II getting a handle on the emotional, social, and spiritual aspects of life with PD are discussed.
Before introducing the speakers, the moderator drew attention to three handouts and how to use them.
1. Answering questions in the Parkinson’s Well-Balanced Life Journal helps you think through your intensions, goals, and what motivates you.
2. After completing the Well-Balanced Life Journal, you can summarize your goals to easily share them with your care partners and medical team using the 1-page Snapshot Tool.
3. Finally, fill out this quick Proactive PD Management Self-Check to see if you are working as an efficient team with your care partners and medical team.
Q. How does understanding what’s meaningful to a patient help you fit treatment around their life, rather than fit their life around treatment.
A. Dr. Gil finds many doctors are only managing the physical care of their patients because they say they are too busy. A person’s complete state of health includes their well-being physically, mentally, emotionally, and financially. If a person is bankrupt, that person is unwell. A physician may not be able to help with bankruptcy, but he can ensure they enjoy physical health while they address the financial issues.
Addressing a person’s emotional and spiritual health is critical becaust that is what makes people happy and able to enjoy life. Happiness is the true measure of their overall health. This is done by treating physical health AND inquiring about and treating mental and emotional wellness. He learned this firsthand from his mother’s experience.
In one year Dr. Gil’s mother lost a leg due to diabetes and one of her sons died. She was understandably unhappy. She is a very religious person and she began taking Prozac to lift her mood. One day, she said to Dr. Gil, “God didn’t take my leg. He gave me a new leg.” That was when the Prozac kicked in. She was much happier being capable of positive thinking.
Just because you have motor symptoms under control, if you are depressed or anxious, you are not happy. In that situation your Parkinson’s is not well treated because you are not happy. You don’t have a good quality of life if you are not happy.
Doctors need to connect with their patients. Dr. Gil feels he has a relationship with his patients and if he doesn’t treat the whole person, he is just a mechanic. Nothing wrong with mechanics, but cars do not have a mind and a soul.
Dr. Scarpellini agrees wholeheartedly. Accepting change is different from endorsing change, but we cannot move forward without accepting change, whether the change is thrust upon us or something of our own choosing. Accepting change involves letting go of the old normal in order to embrace the new normal.
Anissa Mitchell, with PMD Alliance, pointed out that COVID has forced everyone to accept a new normal repeatedly over the past year and a half.
Q. Is there a difference between happiness and joy? Can enjoy something but still not feel happy?
A. Dr. Scarpellini says positive psychology is a new field of study developed in the past 20 years. Whereas therapists used to just treat symptoms of depression, anxiety, mania, etc., positive psychology looks at fostering long-term, enduring happiness or peace of mind.
We all start with an individual personality, our present circumstances, and those things that are under your control. Those things under your control include your mindset, whether positive or negative. The story about Dr. Gil’s mother is a perfect example of this.
In one study, one group of participants were asked to keep a daily gratitude journal, the other group was the control and did not keep a journal. Even months after the end of the study, those who were asked to keep a gratitude journal had continued happiness.
Q. Can we talk about fear, demoralization, and other Parkinson’s emotional roller coaster?
A. Dr. Gil sees a critical moment in his relationship with his patient is when he meets them and has to tell them they have Parkinson’s disease. People come to see him with numbness or a pinched nerve, shuffling gait, or with a balance issue and sometimes, they are completely unaware that Parkinson’s is a possibility.
Years ago, a man came to see Dr. Gil for a ‘pinched nerve.’ Dr. Gil was young and believed this man knew that he had Parkinson’s. It turned out the man had no idea. The man was sold on the idea that he had a pinched nerve. He never came back to see Dr. Gil. Dr. Gil learned that he needs to meet the patient where they are and be gentle in how he informs them about their diagnosis.
People have a vision in mind of famous people they know who have/had PD, but Dr. Gil believes there are so many newer treatment options that most people can live very well, even with PD. There is nothing more terrifying than ignorance because your mind will imagine the worst-case scenario. Knowledge is key to living well with PD. If you know what Parkinson’s is about and what may occur down the road, you are better able to care for yourself today and forestall or prevent some of the outcomes you fear may happen to you.
Dr. Scarpellini agrees that information helps up keep from catastrophizing and keeps our worries ‘right-sized.’ Fearful people tend to write a catastrophic fictional outcome in our head. Education helps us to view real possible outcomes and have tools in our pocket to cope with our biggest fears.
Part of working through acceptance is grieving the old normal. Many of her clients with Parkinson’s have grieved the loss of their ability to play tennis, ride a motorcycle, etc. They must confront their fears of not being heard in a crowd, or the embarrassment of their hand shaking in public. There is a real grieving process when changes in their bodies create a new normal, force them to let go of their old identity, and make them wonder what the new normal will be like.
She says our emotions are kind of like leftovers in our refrigerator, we need to go through them periodically and clean them out or they really start to stink up the place. On a daily basis we can be hungry, lonely, or anxious but as long as we ‘clean out the fridge’ and talk about our feelings we will be okay. But we need to pay attention to when our overall mood shifts toward the negative. That can erode our happiness and lead to anxiety and depression if we don’t get some help. Both anxiety and depression are very treatable to maintain your quality of life.
Keep in mind that depression and anxiety often precede the motor symptoms of PD so when your neurologist asks, “How are you doing?” you may feel your emotional state is normal for you and you not even think to mention it.
Dr. Gil wants to make sure everyone understands the difference between organic depression vs. reactive depression. Organic depression is due to chemical imbalances in the brain. It occurs in many different diseases. People with cancer become depressed before their diagnosis and about half of those with Parkinson’s are also depressed before their diagnosis. Organic depression can be treated with antidepressants.
This is different from reactive depression in which a person experiences a depressed state due to terrible news, like a cancer or Parkinson’s diagnosis. Reactive depression does not respond to drugs. Reactive depression is treated by a mindset adjustment to overcome negativity, fear, and pessimism.
If someone with Parkinson’s maintains a negative outlook and pessimistic attitude, levodopa will not work. Ideally, people should be realistically optimistic. People with Parkinson’s should not look at the worst possible scenario and assume that is their future. Just like having diabetes, there are proven ways to care for yourself with Parkinson’s for the best quality of life. People with Parkinson’s have the same life expectancy as the general population.
All people should be their best advocate to not only treat the physical symptoms of their ailments, but also their emotional state. We should all mention when we are anxious, sad, stressed, etc. with our medical team and get the medication, counseling, or therapy needed to be happy.
Remember the serenity prayer:
God grant me the serenity to accept the things I cannot change,The strength to change the things I can,And the wisdom to know the difference.
Q. What are some things we can do to cope with reactive depression?
A. Dr. Scarpellini says that talking to a therapist can be very helpful. Even Medicare covers seeing a therapist, and it doesn’t have to be a serious issue like organic depression or suicidal thoughts.
Therapist’s bread and butter is teaching people tools to cope with unexpected adversity.
Who you talk to doesn’t’ have to be a psychologist or therapist, but can be clergy or even trusted, level-headed friends and family.
Don’t forget the benefit of exercise on your mood. A recent study showed 150 minutes of weekly exercise is just as effective as antidepressants!
Dr. Gil went for counseling in 2009 with his wife. At the time, he believed empty nest syndrome didn’t exist. As a couple, they learned how to interact better with each other, to identify their interpersonal issues, and how to solve them. Keeping himself busy was always his way for him to avoid reactive depression, but his wife was feeling more depressed than he was.
Music, like exercise, increases endorphins in the brain so it is another good way to improve your mood with little effort or expense. But he agrees that exercise provides the body more benefit than just the ‘runner’s high’ from endorphins because it is good for your cardiovascular system, strength, balance, endurance, and more.
A Canadian study recently assessed a group of people with mid-stage Parkinson’s patients for both motor and non-motor symptoms. Some study participants were assigned to dance therapy for three years, the balance of participants was the control group with no intervention. Both groups were re-assessed every six months over the three years. The dance group had less PD progression (both motor and non-motor) than the control group. Dance helped with motor symptoms (strength, flexibility, and balance) and the music helped with non-motor psycho-emotional symptoms (anxiety, depression, overall mood).
When you listen to music you are activating all the areas of the brain. The Parkinson’s brain is like a family that doesn’t talk to each other or communicate well. Music is like getting the best therapist possible and resolving all the family’s issues.
Q. Why is it important for people to evaluate their spiritual beliefs and cto ommunicate them to their physician? Spiritual does not mean religious.
In a survey, many patients wanted to discuss their spiritual beliefs and how those beliefs affect their treatment choices.
A. Dr. Gil had a professor of infectious diseases in college who was trying to keep Dr. Gil from specializing in neurology and to specialize in infectious diseases because he liked Dr. Gil’s patient outcome. That professor didn’t care why patients improved, just that they did improve. Dr. Gil is a spiritual person and believes his patients improved because he always considers the whole person, including their emotional and spiritual well-being.
One of his patients recently told him that she didn’t do what he suggested because her personal belief is that her improvements were due her church’s prayer circle praying for her. He told her he is 100% in favor in the power of prayer and that she can always follow through on his suggestions when she is ready.
Dr. Scarpellini agrees wholeheartedly. The older we get the more aware we are of how precious time is. By doing a self-evaluation of our own spiritual beliefs and communicating them to our loved ones and medical team ensures that our wishes for our medical care will be respected and carried out.
There is a fine line between planning, like moving into a single-story home in our elder years, and worrying, which just leads to stress and reduced quality of life. You may feel grief over selling and leaving the house with years of good memories in a neighborhood with friends, but making the choice to move to a single-story home closer to grown children can be good, practical planning for the future. We always have the fewest choices when we are reacting to a crisis than when we are proactive and preparing for the future.
Sometimes, people will get stuck in their spiritual journey. For example, one of her patients mentioned he had not been on speaking terms with God since he lost a son at a young age. His bringing up this topic opened their conversation so he could address whether he was ready to move forward. Soon thereafter, he spoke with clergy to explore more about getting spiritually ‘unstuck.’
Q. Spirituality can be helpful in answering existential questions, but can also be the reason people have existential questions. Please talk a little bit about that.
A. Dr. Scarpellini has been a therapist for 25 years. She feels blessed to have had many meaningful conversations with people struggling with existential issues over the years. Our time is limited so we all have to deal with existential questions.
Erik Erikson, PhD, talked about different developmental stages across the lifespan. The 8th Stage is when we reflect on our lives. At any point, where we find ourselves will vary. We may find we have a sense of integrity, or despair, etc. and have to accept different things about our lives, include our mortality. We can talk about these issues with anyone whom we trust.
It is very important to think about and share our end-of-life expectations and wishes so they will be respected when we get to that point. It can be scary to ask ourselves what is meaningful in life and how we feel about pain, suffering, being along, etc. but it is very important to tell our loved ones how we want to be cared for at the end of our lives. It also allows us to form our own narrative about our lives and focus on what is positive and meaningful to us.
Dr. Gil says all religions are about having a positive attitude and good will. When people have faith, they never feel alone. Addressing your spiritual well-being is to improve or maintain your quality of life. That is true for everyone.
Anissa Mitchell reminds listeners to find a physician who respects and encourages your expectation for whole-patient care, that includes not just managing your physical symptoms, but also your mental health, management of stress, anxiety, depression, and your spiritual well-being.