July 11, 2020 · staff, I welcome you to the 2020 HAPS Summer Lecture Series. Started in 2011, the...

Lecture Series

Houston Area Parkinson Society

July 11, 2020

Olga Waln, MD

Movement Lab with Pat Johnson

Dear Friends,

On behalf of the Board of Directors, Board of Advisors, Medical Advisory Board, and HAPS staff, I welcome you to the 2020 HAPS Summer Lecture Series. Started in 2011, the HAPS Summer Lecture Series provides participants with an opportunity during the months of June, July, and August to hear experts present on topics relevant to improving everyday life with Parkinson’s disease.

Due to concerns related to the COVID-19 situation and our desire to limit the risk and exposure of our community, HAPS decided to take these programs to an online-only forum this year. While we know some of the fun is lost with a shift to virtual programming, we are certain the content of each session will be as robust as you have come to expect.

We are excited to present this month’s session on Orthostatic Hypotension and hope you get answers to your questions about low blood pressure and how it relates to Parkinson’s disease. We welcomed more than 180 participants at June’s session as we learned more about speech, swallowing, and voice issues associated with the disease and in August we will take a closer look at how the gut and the brain are connected in Parkinson’s and learn more about what can be done to maintain good gut health.

Since 1974, it has been the intent of this organization to make sure that the local Parkinson’s community is supported by programs, empowered through education, connected to others, and embraced by a network of people who will be with them throughout their Parkinson’s journey. We believe that engagement is key, knowledge is power, and empowerment builds confidence essential for long-term disease management.

We hope that through today’s program, you find information that you can take with you and use in your daily life. As always, HAPS is committed to offering helpful, practical programs and services that aim to improve quality of life, and that support you and your family from the point of diagnosis and beyond. No one should have to face Parkinson’s alone and during this unique time of physical distancing, it is our hope that you continue to feel supported and confident. HAPS is always a place you can turn to for support and we look forward to working together.

Sincerely,

Kathleen Crist, LMSWExecutive Director

Houston Area Parkinson Society sincerely thanks today’s presenters for generously sharing their time and expertise. Their contribution to helping us better understand Parkinson’s disease and treatment options, as well as providing helpful tips to be used for daily management and getting us up and moving is greatly appreciated.

We extend our most sincere thanks to all of the sponsors of the 2020 HAPS Summer Educational Programs. Their participation and generosity not only makes these programs but future programs possible. Look for additional opportunities in the coming months to hear more from our sponsors. We are grateful for their ongoing commitment and support of the local Parkinson’s community.

We gratefully acknowledge the HAPS Board of Directors, Board of Advisors, and Medical Advisory Board whose dedication and leadership contribute to the quality and development of HAPS educational programs.

At US WorldMeds, we hold a fundamental belief that our science has the potential to improve the lives of people with Parkinson’s disease (PD).

Our commitment to people with Parkinson’s and their care partners is reflected in all that we do. Our pipeline of development projects, along with our three currently available PD treatments, reflect our resolve to bring innovative solutions to the Parkinson’s community.

To learn more about our available PD therapies visit:• Apokyn.com• Myobloc.com• Xadago.com

Pat Johnson is a native Houstonian. Pat graduated from Lamar University with a B.S. degree in Education. For the past thirteen years, she has been a certified personal trainer whose focus has shifted to functional fitness and quality of life issues for older adults. While attending a course in Indianapolis to become a certified Rock Steady Boxing coach, Pat discovered a passion for working with people diagnosed with Parkinson’s disease. Pat was instrumental in building the HAPS boxing program which was started in 2016. Since then, Pat has taught two weekly Rock Steady Boxing classes for HAPS. She also offers private and small group training for individuals with Parkinson’s disease in her own personal studio.

Olga Waln, MD is a fellowship-trained Movement Disorders neurologist practicing at Houston Methodist Neurological Institute, Assistant Professor of Neurology at the Weill Cornell Medical College and Adjunct Assistant Professor at Texas A&M College of Medicine. Her primary clinical and research interests are the evaluation and management of patients with Parkinson’s disease, tremors, dystonia, chorea, tics and gait disorders, botulinim toxin treatment, deep brain stimulation and intrathecal baclofen pump treatment. Dr. Waln received her medical degree from Vitebsk State Medical Institute in Belarus. She completed residency in Neurology at the University of Tennessee Health Science Center in Memphis followed by a two-year fellowship in Movement Disorders at the Parkinson’s Disease Center and Movement Disorders Clinic, Baylor College of Medicine Houston. Dr. Waln is the author of numerous scientific publications and a member of the Houston Area Parkinson Society’s Medical Advisory Board.

TM

PRESENTING PARTNER

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www.acadia-pharm.com©2017 ACADIA Pharmaceuticals Inc.

All rights reserved. ACAD-0035 02/17.

Our work is focused on the central nervous system.

But it comes from the heart.

Sunovion is Proud to Support The 2020 HAPS Summer Lecture Series Sunovion is a global biopharmaceutical company focused on the innovative application of science and medicine to help people with serious medical conditions. Our spirit of innovation is driven by the conviction that scientific excellence paired with meaningful advocacy and relevant education can improve lives.

See the potential for innovation to make an impact for people living with Parkinson’s disease at littlebigthings.com.

Visit www.sunovion.com and connect with us on

Take On Tomorrow®

TAKE ON TOMORROW is a registered Trademark of Sunovion Pharmaceuticals Inc. SUNOVION and are registered trademarks of Sumitomo Dainippon Pharma Co., Ltd. Sunovion Pharmaceuticals Inc. is a U.S. subsidiary of Sumitomo Dainippon Pharma Co., Ltd. ©2020 Sunovion Pharmaceuticals Inc. All rights reserved.

www.acadia-pharm.com©2017 ACADIA Pharmaceuticals Inc.

All rights reserved. ACAD-0035 02/17.

Our work is focused on the central nervous system.

But it comes from the heart.

go online through the poptivism tab at popsockets.com and go online through the poptivism tab at popsockets.com and purchase an option from the Houston Area Parkinson Society purchase an option from the Houston Area Parkinson Society

page–HAPS receives $8 of every purchase! page–HAPS receives $8 of every purchase!

UC202004525 EN - DBS Percept print ads full page HCP journals FY20_v6-FOR PUB.indd 1UC202004525 EN - DBS Percept print ads full page HCP journals FY20_v6-FOR PUB.indd 1 5/26/20 3:43 PM5/26/20 3:43 PM

At UCB, we come together everyday laser-focused on a simple question: How will this create value for people living with severe diseases? We are a global biopharmaceutical company committed to innovation to improve the lives of people with neurological, immunological, and bone diseases, finding solutions to meet their unique needs.

ARE YOU NEWLY DIAGNOSED WITH PARKINSON’S DISEASE?

If you have been diagnosed with Parkinson’s within the last three years, HAPS has programs specific to your needs.• PD 101: An education program

held five times a year and led by prominent movement disorder specialists from the Houston area. This is Parkinson’s disease basics geared toward helping you understand what Parkinson’s is and how to manage the disease.

• PD SELF (Self-Efficacy Learning Forum): A national program offered locally that provides newly diagnosed people with a scientifically-based disease management approach using self-efficacy techniques.

• Newly Diagnosed Support Group: A monthly, professionally facilitated support group for individuals and care partners looking for additional information and peer support.

For information about any of these programs, contact Kathleen Crist, LMSW at [email protected] or

713.313.1704.

YOU ARE NOT ALONE.HAPS IS HERE TO HELP...

We welcome family, friends and care providers to attend.

©2018 Boston Scientific Corporation or its affiliates. All rights reserved. Printed in the U.S.A. NM-528013-AA_MAR2018

Informational Webinar for Patients with Parkinson’s Disease

ADVANCES IN DBS FOR PARKINSON’S DISEASE

Brought to you by Boston ScientificJuly 16, 2020

12pm-1pm CTPresented by: Dr. Ashwin ViswanathanBaylor College of Medicine-Neurosurgery Associate Professor, Faculty Senator, Director of Functional Neurosurgery, Medical Director Dr. Sameer ShethBaylor College of Medicine-Neurosurgery Associate Professor, Vice-Chair of Clinical Research, McNair Scholar

To register for this free webinar, visit:

https://bit.ly/pdwebinar4For more info contact: [email protected]

WOMEN AND PARKINSON’S GROUP

If you are a WOMAN WITH PARKINSON’S and would like to meet other women with PD, we invite you to become a member of this group–now meeting monthly by Zoom.

For more information call the HAPS office at 713.626.7114

Challenging Convention, Changing Lives

We make healthy possible

© 2019 Amneal Pharmaceuticals LLC All rights reserved. Printed in USA. PP-ADP-RYT-US-0042 04/2019










In addition to Mornings with Maggie on

Facebook, HAPS also o�ers live weekly classes

via Zoom. There are many to choose from

including dance, exercise, speech, yoga, tai chi,

PWR! and more–now with evening and

Saturday options!

Check out the HAPS calendar online at

www.hapsonline.org to see the monthly

schedule and get registered today!

LIVE CLASSES NOW MEETING ON ZOOM!

NEED HELP REGISTERING? CALL 713.313.1652 FOR ASSISTANCE.

For more information call the HAPS office at 713.626.7114

Sponsored by Acorda Therapeutics®, Inc. ACORDA THERAPEUTICS and the stylized ACORDA THERAPEUTICS logo are trademarks of Acorda Therapeutics, Inc. PD8467 11/2019

PROGRAM INFORMATION FEATURED SPEAKER(S)

Recognizing When Parkinson’s SymptomsStart to Return

?Experiencing a RETURN OFyour Parkinson’s SYMPTOMS

You’re not alone.

This presentation is not medical advice or an attempt to provide medical advice. Talk to your healthcare provider to determine the best treatment for you.

Join us for a FREE educational program!

Call 1-833-462-7452 or visit www.LivePDEducation.com

Friday, July 31, 202012:00 PM to 1:00 PM CDT

Webinar

Toby Yaltho, MDNeurologistHouston Methodist Sugar LandNeurology Associates

PLEASE REGISTER BY FRIDAY, JULY 24, 2020





You’re not alone.





Webinar







You’re not alone.





Webinar







You’re not alone.





Webinar







You’re not alone.





Webinar



TIMES ARE UNCERTAIN, BUT OUR COMMITMENT IS NOT.

Join us in our Summer Giving Campaign. Your support helps us continue our mission to ensure that no one faces Parkinson’s alone.

To donate text DONATE2HAPS to 51555 or go to www.hapsonline.org.





You’re not alone.





Webinar







You’re not alone.





Webinar







You’re not alone.





Webinar



LOOKING FOR SUPPORT?

• GENERAL SUPPORT• NEWLY DIAGNOSED• CAREGIVER • PATIENT ONLY• ATYPICAL PARKINSON’S

HOUSTON AREA PARKINSON SOCIETY has 18 support groups that meet each month throughout the 8-county area. Currently meeting virtually, all groups are open to new members. Call 713.626.7114 for more details.

Encora is an early stage startup made of 4 MIT Mechanical Engineers. We are

building wearables for patients with movement disorders to help address

their symptoms and regain their independence. We are working on the next

version of our product and need some feedback from potential users,

caregivers, and doctors to define our next steps.

Please reach out to us at [email protected] or on our website at

https://encora-inc.com/ if you would be willing to speak with us about your

daily experience! Our primary goal is getting this useful technology to the

people who could benefit from it as soon as possible.

Olga Waln, MDHouston Methodist Neurological Institute

Weill Cornell College of Medicine

Hypotension = low blood pressure

Orthostatic = in upright position

Normal BP = 100/60 – 140/90

OH (postural hypotension) – BP drop when changing position from lying to sitting or sitting to standing

BP is regulated by reflexes in the nervous system.

BP depends on:

a) heart pumping blood to blood vessels,

b) amount of blood circulating in blood vessels,

c) resistance of blood vessel walls

BP fluctuates throughout the day (goes up during stress or physical activity; goes down during rest).

Normally, body can adjust BP in response to any stimulus (rest, activity, changes in body position) to prevent BP from going too high or too low.

Blood vessels can dilate or constrict to adjust blood flow to certain body part (stomach after large meal, skin when it is hot or cold outside)

https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=2ahUKEwiY5qDalr_eAhVLSK0KHb5LAI4QjRx6BAgBEAU&url=https://pmgbiology.com/tag/vasodilation/&psig=AOvVaw09ejrZAXAGBqmbIbtZwAvs&ust=1541573421396219

Most PD patients have normal BP or even high BP (unrelated to PD)

20-30% of PD patients can develop OH

OH is more common in older PD patients, patients with longer duration of PD, patients on higher doses of PD medications, patients on medications for high BP

Multiple system atrophy (MSA) – condition similar to PD but often has severe and early OH

In PD, nervous system reflexes can be abnormal -> blood vessels do not respond appropriately -> more blood flows to lower body in upright position

PD medications can decrease BP

Nausea due to PD medications can decrease food and water intake -> less blood volume circulates throughout the body

If you sit up / stand up and feel:❑About to pass out (or

actually passing out)

❑Dizziness / lightheadedness

❑Blurry or darkening vision

❑Weak all over

❑Foggy / muddled

❑Chest pain

You might have OH!

If you have the same symptoms:❑After exertion (dilated blood vessels)

❑After large meals (dilated blood vessels)

❑After drinking alcohol (dilated blood vessels)

❑After hot bath (dilated blood vessels)

❑When spending time outside on a hot day (dilated blood vessels)

❑When getting up from bed in the morning (dehydration / decreased blood volume)

❑When straining on the toilet

You might have OH!

Check your BP after lying down for at least 5 minutes (it is normal??!!)

Sit up and wait for 2-3 minutes

Check your BP (dropped down? -> OH)

Stand up and wait for 2-3 minutes

Check your BP (dropped down? -> OH)

OH – systolic BP (top number) drops by 20 points or more, diastolic BP (bottom number) drops by 10 or more.

When BP drops below 100, you most likely to have symptoms

Example: 157/87 -> 115/79; 114/76 -> 86/54

Note – BP can go up when you lie down for some time (positional hypertension)

In rare cases, tilt table test can be ordered (you have symptoms of OH but BP checks are equivocal, you cannot stand up)

Flat table tilts to raise the upper part of your body similar to going from lying down to standing.

You feel tired and avoid many activities

You can walk but prefer wheelchair

You cannot exercise (you feel dizzy)

You might need to stop driving (dizzy!)

Your doctor might be afraid to give you sufficient dose of PD medications to improve your tremor and walking (PD medications can worsen OH)

OH can be dangerous! It can cause:◦ Syncope (passing

out spells)

◦ Falls

◦ Injuries

Review your medications with your doctor – some medications / doses can be changed.

Medications can decrease BP and worsen OH:➢Medications for high BP (atenolol,

lisinopril, losartan, amlodipine etc)➢Diuretics (water pills)➢Heart medications (nitroglycerin)➢Prostate / bladder medications

(tamsulosin)➢PD medications (levodopa,

pramipexole, ropinirole, rasagiline, entacapone)

Be careful:➢Avoid staying in hot environment

for too long (use fan)

➢Stay hydrated (always carry a bottle of water if you go out)

➢Stand up slowly. When you stood up, wait for a minute next to a chair or bed, then start walking

➢If you like outdoors, carry a shooting stick with a seat to sit down if you need

➢Avoid crossing your legs when sitting

Review your diet:➢Eat small, frequent meals. Avoid large,

hot meals. Avoid too much sugar and “easy carbs” (eat fruits instead of candies)

➢Avoid / reduce alcohol➢Drink caffeinated coffee in the morning➢Add extra salt to your meals (check with

cardiologist if it is OK)➢Drink full glass of water in the morning

before getting up from bed➢Drink about 2L (3.5 pint) of fluids a day

(water, tea, low sugar juice)

Gentle exercises can reduce OH by improving blood circulation in the limbs (especially if you have to sit for a long time):➢Stretch your legs in the chair

➢“March” your feet on the spot

➢Slide your feet up and down your shin or the chair

➢Rotate your ankles

If you feel dizzy:➢Sit down or lie down right

away!➢Remove / step away from

any dangers (hot liquids, open fire, sharp corners)

➢Raise your legs above your hips

➢Drink some fluids➢Once feeling of dizziness

goes away, try to stand up slow

Remember – BP can go up when you lie down flat.

Elevate head of your bed by at least 30 degrees (just using few extra pillows will not be enough)

Check your BP sitting and standing at least 1-2 times a week or every day after any change in your BP / PD medications

Let your doctor know if you noticed OH after changing your medications. Do not wait until your next scheduled appointment!

Telemedicine doctor cannot check your BP – you have to do it!

Non-medication treatment:➢Reduce medications

that can decrease BP

➢Compression stockings

➢Abdominal binder

➢Salt pills

Medications:➢Fludrocortisone

➢Midodrine

➢Pyridostigmine

➢Droxidopa

All medications can cause BP to go too high

Fludrocortisone:◦ Synthetic steroid similar to one produced by

adrenal gland

◦ Affects salt balance in the body, makes body retain salt -> increases volume of circulating blood -> increase in BP

◦ Once a day pill

◦ Cannot be used in some heart conditions (severe congestive heart failure)

Midodrine:◦ Works by stimulating norepinephrine receptors on

blood vessels causing blood vessels to tighten -> increase in BP

◦ Do not take it too close to bedtime (last dose no later than 3-4 hours before bedtime)

◦ 2-3 times a day

Droxidopa:◦ Causes small and temporary increase in

norepinephrine that stimulates the receptors on blood vessels causing them to tighten -> increase in BP

◦ 3 times a day

Pyridostigmine:◦ Used for years for myasthenia gravis

◦ Works at the level of autonomic ganglion (collection of cells sending signals to blood vessels to tighten them). Ganglions become more active when standing up

◦ Has only modest effects on supine or sitting BP (less chance to have BP too high when sleeping at night)

OH is common in PD

Now you know how to check if you have it

OH can affect your life and can be dangerous

OH often can be managed without additional medications

There are medications to treat OH

By using a whole-human approach to community building, Houston Area Parkinson Society, a local non-profit organization, reduces the fear and isolation associated with a Parkinson’s diagnosis by providing free services, education and advocacy throughout the greater Houston area.

www.hapsonline.org

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