“Optimizing Personal Health Strategies to Manage Parkinson’s” – Webinar Notes

Partners in Parkinson’s (partnersinparkinsons.org) is a partnership between the Michael J. Fox Foundation and AbbVie Pharmaceuticals. In early October, they held a webinar on optimizing personal health strategies to manage Parkinson’s Disease (PD), using goal setting. Though the webinar was supposed to be focused on “care beyond the clinic,” the first part of the webinar actually focused on communicating with your physician.

Most of the webinar applies to those with disorders other than PD. I thought the best part of the webinar was the section on mental health. To address mental health, those with a neurological disorder should:

* Monitor non-motor symptoms, such as depression, anxiety, apathy, sleep problems, and cognitive issues

* Consider speaking with a mental health professional and/or joining a support group

* Supplement medication with other strategies to manage mental health – exercise, meditation, massage, and counseling

You can find a link to the webinar here:


Note that registration is required but there’s no fee to view the webinar.

Volunteer extraordinaire Denise Dagan listened to the webinar and took notes. They are shared below.



Notes by Denise Dagan, Brain Support Network Volunteer

Care Beyond the Clinic: Optimizing Personal Health Strategies to Manage Parkinson’s
Partners In Parkinson’s
October 4, 2017 Webinar

* Dr. Soania Mathur, MJFF Patient Council Co-Chair and person with Parkinson’s

* Dr. Irene Richard, a movement disorder specialist
* Chad Moir, Founder of Dopafit: Parkinson’s Movement Center in Easthampton, MA
* Dan Kinel, a person with Parkinson’s


Maintaining Quality of Life (QoL) with PD
* Set goals to help maintain quality of life.
— What matters most to you?
— Adjust goals as needed.
* Control the variables that you can.
* Find balance between physical, mental and social health (they all affect each other).

Speakers define quality of life as doing what you want to do, when you want to do them. Parkinson’s often reduces QoL in some ways, particularly physically, but also enhances QoL in personal/emotional ways.

For Dan Kinel, focusing on maintaining QoL has improved his fitness, as he now focuses on exercise to best maintain his movement. He regularly shares with his doctor his current symptom condition as well as his diet and exercise routines, so his Dr. can address those symptoms Dan cannot control, like tremor.

Dr. Richard says Dan’s communication with his doctor in this way is perfect! Even if you only have a nurse practitioner with a lot of PD experience, getting feedback as to what may help maintain QoL is better than nothing until you can see your neurologist. You do need to strike a balance between living your life and spending more time than you would like on exercise and monitoring diet.

Chad always asks new members to Dopafit what their goals are in adding movement/exercise to their routine. In this way, Dopafit can support those goals in the most efficient and fun way. You won’t regularly do an activity you don’t enjoy. Try dancing if you don’t like Rock Steady Boxing.

Dr. Richard says people become frustrated when their body will no longer do things they used to. It helps to reset your expectations so you can continue to do some of the things you loved if you accept that you may be able to do those same things more slowly, or keep an open mind to explore things you have not done before, but that you may really enjoy now. Exercise – the earlier, the better – may benefit neuro-protective and restorative benefits, and even benefit mood, sleep, and thinking. Tai-Chi has been researched, particularly, but also mental exercises are of benefit in the same ways.


Physical Health and Parkinson’s
* Be consistent with medication and other routines to help manage symptoms
* Build a management team of experts you trust
— Contact an AbbVie advocate to locate resources in your area at www.pdadvocates.co
— Allied care professionals
— Complementary medicine
* Exercise is KEY to optimizing overall health

Dan moves his body in some way every day to maintain mobility and flexibility. He also socializes with friends or community every day. He says, just do something you feel engaged in.

Dr. Mathur asked Chad how he helps members of Dopafit to overcome apathy. He encourages members to think about which activity they have tried that they, “don’t like the least,” and commit to doing that.

Dan says having a commitment to do an activity with friends, who are expecting him, helps him overcome apathy, laziness, loss of interest, and get out the door to move and/or be social.

Dr. Richard suggests that engaging with other people also helps with projecting your voice or being aware of your own facial masking as PD symptoms progress. If you let it, that feedback may help keep you from withdrawing so you continue to be engaged with people and active, which are both part of maintaining QoL. Setting a schedule with a spouse, friends, or a place like Dopafit to get out and socialize or exercise goes a long way toward this.

Chad says Dopafit is doing more than just old-fashioned workouts. They offer Rock Steady Boxing, giant Jenga for fine motor skills – and fun!, tango and other dance, Tai-Chi, the Art Cart for fine motor skills, and more. Having all these various activities available adds a tremendous social element to participating. It all plays in to QoL and the whole person, rather than just muscle strength.

Dan has done a tremendous variety of PT, OT, speech therapy, acupuncture, massage, social engagement and several exercises to slow the progression of his disease and maintain his QoL. He says to remember that others are going about their day and not paying attention to you, even though you may feel that everyone is staring at your gait, facial mask, etc.

Dr. Richard says all the things Dan has been doing is complementary to properly balanced medications, so you have to pay close attention to getting both in order to be able to do all activities throughout the day, safely.


Mental Health and Parkinson’s
* Monitor non-motor symptoms
* Consider speaking with a mental health professional and/or joining a support group
* Supplement medication with other strategies to manage mental health
— Exercise
— Meditation
— Massage
— Counseling

Dr. Richard says it is very common to have depression, apathy, mood, sleep, concentration problems with PD, but your doctor can help with all of these with medication options in concert with exercise, meditation, counseling and other tools. Doctors don’t always ask about your mood or emotional state in your neurological appointments. She says, please, please, please don’t feel it is not a personal deficit, but one way in which your PD is manifesting itself so bring those changes up to your neurologist to get help.

Dan mentioned several members of his care team, but forgot to mention his therapist who really helped him to get through the depression that overtook him when he first got his PD diagnosis. It was a combination of medications, talk therapy, support group, etc. If he finds himself feeling that way again, he will reconnect with that therapist.

Dr. Richard reminds us that doctors believe depression that is treated before motor symptoms are noticed, is probably the first presenting symptom of PD because they now recognize depression can be a symptom of PD.

Dan says your doctor can’t read your mind, so you need to tell them how you have been feeling, regardless of the cause. If it is decreasing your QoL it is worth bringing up to discuss how to overcome those low feelings so you can feel more motivated to do the exercise, socialization, etc. that maintain QoL in other ways.

Dr. Richard wants everyone to remember to use the valuable services of PT, OT, speech therapists as part of your care team.


Accomplishing goals and optimizing personal care
* Living well is about creating a plan and making changes as needed to address your overall health
* Set goals that address all aspects of your care, including physical, mental and social health.
— Speak openly with your doctor and other members of your care team about how they can help you reach your goals.


Dr. Richard says most people have multiple medical conditions as they age so if you have chronic low back pain you may not be able to participate in some of the popular exercise programs for PD, but you can seek physical therapy advice to find exercises that will not only keep you moving, but help the lower bcd pain. Communication between your neurologist and PT is crucial.

You can even start with your primary care physician (PCP) about those other medical conditions outside your PD. They may refer you to a neurologist, movement disorder specialist, or PT. Be sure all your team is communicating with each other.

Dr. Mathur brought up how does dementia play into PD care? Dr. Richard says you can get all levels of cognitive dysfunction in PD, especially as people get into really advanced years. It can just be executive function issues, which is easier to adapt to. But, in some cases people will develop dementia, which is defined as cognitive impairment that affects your ability to accomplish the activities of daily living without assistance. If you think you have cognitive impairment, you should have an evaluation. You can get recommendations for improving independence. You can find our you have delusions and learn how to manage living with this more confusing and debilitating condition.

Dr. Mathur asked Chad about his mother, who had PD which was undiagnosed for many years. Chad said she had cognitive impairment and as a care partner he found the best thing he could do with respect to activity is to meet her where she was because her ability to remember from one day to the next, have the motivation to cooperate with exercise, etc. was very fluid.

Dr. Mathur asked Dr. Richard if there is a minimum amount of exercise daily and how does medication play into that?
There are a lot of studies into what kind of exercise is best, what they achieve, how often to do it, and for how long. She says there is not definitive answer to any of it. She recommends doing something every day, get your heart rate up, but there is no specific prescription. Don’t overdo it so you are in pain or debilitated afterward. Don’t let it take over your life unless you truly enjoy spending that much time exercising. Stay really well hydrated!!!

Dan exercises right after taking medication so he can move most smoothly. He works out every day and is cognizant not to overdo it. He gets his heart rate up and tries to engage his mind while exercising. He really enjoys non-contact boxing. He really doesn’t want to overdo it so he doesn’t suffer an injury and have a tremendous set-back while he recovers from an injury.

Dr. Mathur asks if the massage therapist and other allied professionals should be certified? Dr. Richard says PT, OT and speech therapists should definitely be specially trained in PD. There are those who are specially trained in neurological conditions, but that is often focused on stroke. You would do better with someone who has been trained or is willing to educate themselves about PD specifically.

Dr. Mathur asked everyone what is the most important thing you could tell someone with PD to optimize their QoL.
– Dan would say you are still the same person the day after the diagnosis. Don’t obsessively look at the internet, exercise and reach out for support from whomever is willing to help walk you through this.
– Chad says be proactive. First thing, find a movement disorder specialist you feel comfortable with so you can really communicate with them about depression, etc. Then, build your team (PT, OT, speech therapist, etc.) and get involved in the PD community (support group, fundraising – whatever is for you). Exercise!
– Dr. Richard says keep an open mind because you will continue to learn, symptoms will change, get your information from reliable sources and once you have all the information discuss it with your Dr. and decide what treatments, medication, exercise, social involvement, etc. work for you over time.

Agenda – October 28th PSP/CBD Research Update and Family Conference

UPDATED (11-27-17):  This was a great conference!  See our complete conference webpage here:



Register now for the conference as space is limited.  Questions?  Contact us.

Here’s the tentative agenda (subject to small changes):

PSP/CBD Research Update and Practical Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (California)

Hosted by:
Brain Support Network

Organized in partnership with:
University of California San Francisco Memory & Aging Center

Generously sponsored in part by Biogen.

Check-in; continental breakfast; visit exhibitor tables

Welcome by Brain Support Network


9:10am  (15min)
Adam Boxer, MD, UCSF MAC – overview of PSP clinical research

9:25am  (15min)
Richard Tsai, MD, UCSF MAC – tau PET imaging for CBS

9:45am  (5min)
Dianna Wheaton, PhD, FTD Registry – update on the registry (which includes PSP and CBD)

9:50am  (15min)
Larry Golbe, MD, Rutgers Robert Wood Johnson – investigating the geographical cluster of PSP in France

10:05am  (10min)
Daniel Lee, PhD, University of South Florida, Tampa – pre-clinical research update on tauopathies

10:15am  (25min)
PANEL of previous five speakers, moderated by Alex Klein, PhD, CurePSP


10:40am  (10min)
Haung (Ho) Yu, PhD, Columbia – research update on clearance of misfolded tau protein

10:50am  (10min)
Stewart Clark, PhD, University of Buffalo – research update on creating a pre-clinical model for PSP

11am  (10min)
Adam Gerstenecker, PhD, University of Alabama at Birmingham – research update on functional ability in PSP

11:10am  (10min)
Gerard Schellenberg, PhD, Penn Neurodegeneration Genomics Center – what we know and don’t know about PSP and CBD genetics

11:20am  (25min)
PANEL of previous four speakers, moderated by Alex Klein, PhD, CurePSP

11:45am  (60min)
Lunch and visit exhibitor tables


12:45pm  (15min)
Donna Schempp, LCSW – resilience and coping

1pm  (10min)
Leslie Wolf, person with CBD – Holding Steady on Shaky Ground

1:10pm (10min)
Phil Myers, (former) caregiver to wife with PSP, Brain Support Network – Eight Things We Learned From This Journey

1:20pm  (10min)
Jeanette Brown, MD (retired), person with PSP – Being (a) Patient with PSP

1:30pm  (30min)
PANEL of previous four speakers, moderated by Robin Ketelle, RN, UCSF MAC

2:00pm  (20min)


2:20pm  (25min)
Sharon Sha, MD, Stanford – Corticobasal Syndrome, Corticobasal Degeneration, and Progressive Supranuclear Palsy: What are the Tauopathies?

2:45pm  (25min)
Megan DePuy, SLP, private practice, San Mateo – what can we do about speech and swallowing problems?

3:10pm (25min)
Erica Pitsch, DPT, UCSF – what can we do about movement problems?

3:35pm  (15min)
Heather Moss, MD, neuro-ophthalmology, Stanford – what can we do about eye movement problems?

3:50pm  (30min)
PANEL of previous four speakers, moderated by Robin Riddle

Closing remarks by Brain Support Network

Note:  We are using “CBD” to refer to both CBS and CBD.