You are invited to
The Capital District Parkinson's Support Group
Fall Party

Saturday, November 15, Noon to 3
Place: Parkinson's Center YMCA

98 Wolf Rd, Colonie, NY 12205  - In the Hannaford Shopping Plaza

Directions to The Parkinson's Center YMCA

What is The Parkinson's Center YMCA?

Sorry! We have sold out the event. Registration is closed.

October 9, 2025  - Monthly Support Group Meeting - 7:00 - 8:30 p.m.

PRESENTER: Dr. Eric Molho

TOPIC: Dr. Molho is head of the Movement Disorder Clinic at Albany Medical Cen

==================================

NOTE:

This will be our last meeting held at the Glen Eddy

Meetings after October 9, 2025 will be held at the Parkinson's Center YMCA.

What is the Parkinson's Center YMCA?

Where is the Parkinson's Center YMCA.

WHAT: September Monthly Meeting

WHEN: Thursday, September 11th, 2025 | 7:00–8:30 p.m.

PRESENTER: Fran Weiss, MS RDN CDN, a Hannaford Dietitian

TOPIC: Eating Healthy with Parkinson's - Fran will talk about guidelines for a healthy diet, tips for managing low blood pressure,  ideas to help alleviate nausea, fast and  easy navigational tools to facilitate healthy grocery shopping, and  

Support Group Meeting - 7:00 - 8:30 p.m.

PRESENTER: Toni Carroll, Executive Director, Capital District YMCA

TOPIC: Parkinson's Center of the Capital Region @ the YMCA

Join us for a presentation introducing the new Parkinson's Center at the YMCA in Colonie.  Learn how this dedicated space will offer specialized programs, expert support, and a welcoming community to help individuals with Parkinson's live stronger, healthier lives.

WHERE:  Glen Eddy Senior Residence,

Still time to register for the picnic!

THE CAPITAL DISTRICT PARKINSON’S SUPPORT GROUP

Annual Summer Picnic!

When:  Saturday, July 19, 2025, 12 to 3, rain or shine

Where:   BETHLEHEM ELM AVENUE PARK Large Pavilion

261 Elm Avenue, Delmar, NY 12054 (New location!)

(Directions)

Accessible:NEW bigger location, closer handicapped parking and

restrooms, bigger pavilion, more shade, more fun!

Cost:  $10 per person; families and friends are welcome

Reserve:  Extended to July 16, 2025

(Reservations help us, but, if necessary, walk-ins are ok.)

Food:   Sandwiches, salads, fruit, desserts and drinks provided.

Gluten free options can be arranged.

Activities:  Dance Beyond Parkinson's with Rachelle, Ping Pong

Horseshoes, Corn Hole, Volleyball and More

Picnic tables in the pavilion provided; BYO lawn chairs if desired.

We hope to see you there!

Support Group Meeting - 7:00 - 8:30 p.m.

PRESENTER: Scott Parmelee, MS, MBA

AbbVie Neuroscience: Parkinson’s

Account Executive

====

VYALEV™ (foslevodopa/foscarbidopa solution) is a recently FDA-approved continuous 24-hour subcutaneous infusion therapy for advanced Parkinson’s disease. It provides stable levodopa delivery to reduce motor fluctuations including "off" time and dyskinesia, improving "on" time without troublesome dyskinesia. VYALEV represents a non-surgical alternative to device-aided therapies, with evidence from pivotal Phase 3 trials supporting its efficacy and safety in patients inadequately controlled by oral levodopa.

What is VYALEV?

VYALEV (foslevodopa/foscarbidopa) is a formulation of levodopa and carbidopa prodrugs given via continuous subcutaneous infusion for advanced Parkinson's disease patients experiencing motor fluctuations not managed well by oral medications. It delivers levodopa steadily throughout 24 hours, bypassing the digestive system, which can be unreliable in absorption for PD patients, ensuring more consistent symptom control.

Clinical Benefits

The FDA approved VYALEV based on a Phase 3 clinical trial comparing it to oral immediate-release carbidopa/levodopa (CD/LD IR). Key findings include:

• A 2.72-hour increase in “on” time without troublesome dyskinesia compared to 0.97 hours for oral therapy over 12 weeks.

• Significant reduction in “off” time when symptoms recur due to medication wearing off.

• Improvements noted as early as one week and maintained throughout the study duration.

• Additional benefits reported in open-label extension studies include reduced morning akinesia, better sleep quality, and improved daily living motor experiences.

How VYALEV Works

VYALEV’s foslevodopa and foscarbidopa are prodrugs that convert enzymatically into levodopa and carbidopa in the body. Carbidopa inhibits peripheral conversion of levodopa to dopamine outside the brain, enhancing levodopa’s availability to the central nervous system where it is converted to dopamine to alleviate PD motor symptoms.

Continuous subcutaneous infusion allows steady plasma levodopa levels, reducing fluctuations seen with oral forms and associated motor complications like dyskinesia and "off" periods.

Administration and Practical Considerations

• VYALEV is administered using a wearable pump (Vyafuser) that delivers medication continuously under the skin at adjustable doses to fit individual needs, 24 hours a day.

• This method bypasses issues of gastrointestinal absorption variability and food interactions common with oral levodopa.

• Patients must have a backup oral levodopa supply in case of pump interruption to avoid withdrawal.

Safety and Side Effects

• Infusion site reactions and infections are common; around 28% of patients experienced infections at the infusion site in trials, though most were mild to moderate. About 5% discontinued due to site infections.

• Other side effects include hallucinations, dyskinesia, sleepiness or sudden sleep episodes, and possible cardiovascular effects.

• Patients must be monitored for hallucinations and sleepiness because continuous dopaminergic stimulation can increase these risks.

• Concomitant medications like MAO inhibitors are contraindicated due to hypertensive risk.

• Dose adjustments may be necessary based on side effect profiles[1], [3].

Place in Parkinson’s Management

• VYALEV is intended for advanced PD patients whose motor symptoms—including fluctuations and dyskinesia—are not adequately controlled with oral medications.

• It is a non-surgical alternative to device-assisted therapies like deep brain stimulation, beneficial for those unable or unwilling to undergo surgery.

• It may be part of a personalized treatment plan, sometimes used alongside other advanced therapies[4].

Health Disclaimer

This information is not a substitute for professional medical advice. People with Parkinson’s considering VYALEV should discuss with their neurologist or movement disorder specialist whether this treatment is appropriate, considering individual symptom profile and overall health.

Sources

U.S. FDA Approves VYALEV™ (foscarbidopa and foslevodopa) for Adults Living with Advanced Parkinson's Disease

https://news.abbvie.com/2024-10-17-U-S-FDA-Approves-VYALEV-TM-foscarbidopa-and-foslevodopa-for-Adults-Living-with-Advanced-Parkinsons-Disease

First Continuous Infusion Levodopa System Approved in the United States: What You 

Need to Know About VYALEV - Davis Phinney Foundation

https://davisphinneyfoundation.org/continuous-infusion-levodopa-approved-usa/

VYALEV (foscarbidopa/foslevodopa) prescribing information

https://www.rxabbvie.com/pdf/vyalev_pi.pdf

New Continuous Pump Medication for Parkinson’s Completes Trials in Europe | Parkinson's Foundation

https://www.parkinson.org/blog/science-news/produodopa

ZOOM discussion: Creativity has been shown to be helpful for people with Parkinson’s.  Let’s share and learn about how our creative pursuits impact us.

We recommend, but don’t require, reading the articles linked below.

• Psychology Today - PD drugs and creativity

• ADPA - Art therapy and PD

After registering, you will receive a confirmation email containing information about joining the meeting.

Support Group Meeting - 7:00 - 8:30 p.m.

PRESENTER: Dr. Era Hanspal, MD, Movement Disorders, Neurology, Albany Medical Center

TOPIC: Emotional Aspects of Parkinson's Disease

While Parkinson's Disease is often recognized for its impact on movement, non-motor symptoms—especially emotional challenges—can have an even greater effect on the quality of life for people living with PD and their care partners. Dr. Hanspal, known for her compassionate care and personal connections with patients, caregivers, and colleagues alike, will offer an engaging presentation on the emotional aspects of Parkinson's Disease. Following the talk, Dr. Hanspal will lead an open discussion with participants.

WHERE: Glen Eddy Senior Residence, 1 Glen Eddy Drive, Niskayuna, NY 12309

Directions to Glen Eddy: 

Use the main entrance. Park in the upper lot along the stone wall. The meeting room is on the second floor. The elevator and stairs are off the lobby to the left.

This will be a hybrid meeting.

If you are able, please attend in person. In-person attendance does not require registration.

OR to attend online via ZOOM:

Register in advance for this meeting by clicking []

After registering, you will receive a confirmation email containing information about joining the meeting.

TOPIC: LSVT LOUD 

The prgram trains people with PD to use their voice at a more normal loudness level while speaking at home, work, or in the community. Key to the treatment is helping people "recalibrate" their perceptions so they know how loud or soft they sound to other people and can feel comfortable using a stronger voice at a normal loudness level. 

PRESENTER: Elizabeth Marsh, SLP

Physical Medicine & Rehabilitation

Speech-Language Pathology

Support Group Meeting - 7:00 - 8:30 p.m.

TOPIC: DBS - Deep Brain Stimulation

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions to Glen Eddy

Use the main entrance. Park in the upper lot along the stone wall. Meeting room is on the second floor. Elevator and stairs are off the  lobby to the left.

This meeting will be a hybrid meeting.

If you are able, please attend in person. Registration is not required.

OR to attend by Zoom:

Register in advance for this meeting by clicking []

After registering, you will receive a confirmation email containing information about joining the meeting.

WHAT: Capital District Parkinson's Support Group Meeting for February 2025

WHEN: Thursday, February 13th  -  7:00 - 8:30 p.m.

FORMAT: Online via Zoom, only. No in person meeting at Glen Eddy

PRESENTER:Leah Purcell and William Tuthill (Our scheduled presenter, dietitian Fran Weiss, is unable to join us this month. We’ll reschedule with her for a future meeting.)

TOPIC (NEW!): Using Art as a Way of Calming
Join us as we explore simple, creative ways to use art for relaxation—no artistic skills required! If you can’t draw a straight line, you’re in the right place! Leah will share fun, easy techniques for doodling, creating, and letting things flow.

What to Bring:

• Paper and a pencil (unlined paper like computer paper works best)

• If you have them: markers, felt-tip pens, colored pencils, or crayons

WHERE:  This will be a ZOOM only meeting. We will not be meeting in person at the Glen Eddy this month.

The Zoom meeting room will be open at 6:45. Come early for 15 minutes of informal chat.

Register in advance to attend this meeting by clicking []

After registering, you will receive a confirmation email containing a link to join the meeting.

We look forward to seeing you online!

Register to attend the meeting

Join us for the CDPSG Winter Party!

Date: Saturday, January 18th, 2025 

Time: Noon - 3:00 PM 

Location: Delmar Reformed Church, 

386 Delaware Ave, 

Delmar, NY 12054 

Theme: Cozy Wintertime Party

Details: We've moved the party to January due to venue availability in December. Enjoy music, ice-breakers, games, and lunch with a cozy winter theme!

Volunteers Needed: We're looking for enthusiastic volunteers to help plan and run activities at the event. If you're interested, please contact Leah Purcell at leahpurcell257@gmail.com or 518-487-1536.

Capital District Support Group Meeting - December  12, 2024 - 7:00 - 8:30 PM

PRESENTERS: Jud Eson - PwP, Nancy Eson - Care Partner

Topic: Creativity and PD

This will be a ZOOM only meeting. We will not be meeting in person at the Glen Eddy this month.

The Zoom meeting room will be open at 6:45. Come early for 15 minutes of informal chat.

Register in advance to attend this meeting by clicking

After registering, you will receive a confirmation email containing a link to join the meeting.

Agenda:

Watch and discuss a short humorous video - Laughter and a sense of humor are good for your emotional, physical, and spiritual health.

Art and music have long been used as therapy to help alleviate psychological and neurological disease, but there has been little study on its use by Parkinson’s patients. There's hope art and music may help with some symptoms of the disease. 

Watch and discuss  a short video about how a person with Parkinson's is using art and music to ease their symptoms.

Register in advance to attend this Zoom meeting by clicking []

After registering, you will receive a confirmation email containing information about joining the meeting.

Dr. Sarah Gutenmann - Doctor of Physical Therapy

Dr. Carmen Nightingale, PT, DPT, NCS, CSRS in Neurologic Physical Therapy

Topic: Introduction to In-Step Mobility Devices

Our presenters from Albany Med Outpatient Physical and Occupational Therapy will introduce the In-Step mobility devices, with a focus on the U-Step II walker. They will discuss its benefits, cost, and insurance coverage.

For those attending in person, you'll have the opportunity to see the device firsthand and even try it out. Dr. Sarah and Dr. Carmen will be available to answer questions from both in-person and Zoom attendees.

TOPIC: Dr. Eric Molho - Head of the AMC Movement Disorder Clinic

WHERE:  Glen Eddy

Use the main entrance. Park in the upper lot along the stone wall. Meeting room is on the second floor. Elevator and stairs are off the  lobby to the left.

Meeting: 09/12/2024 Support Group Meeting - 7:00 - 8:30 p.m.

PRESENTER:   Becky J. Bernhardt, OTD, OTR/L, C/NDT
Associate Professor of Occupational Therapy, Russell Sage College

TOPIC: Understanding and getting the most our of Occupational Therapy: when to seek therapy, creating goals with your therapist, and getting the most from your therapist. The job of an OT is to identify strategies that will allow you to continue  doing activities that are important to you. Each person with PD will  have different goals based on his or her symptoms and disease  progression, as well as individual lifestyles, interests and priorities. Whether you have been living with PD for one month, five years or 20  years, and whether your goal is playing tennis or spending time with family, an OT will help you to find ways to match your personal  strengths with activities that will help you reach  your goals.

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions to Glen Eddy

Use the main entrance. Park in the upper lot along the stone wall. Meeting room is on the second floor. Elevator and stairs are off the  lobby to the left.

This meeting will be a hybrid meeting. You can attend in-person or by ZOOM meeting.

If you are able, please attend in person. Registration is not required to attend in-person.

OR to attend by Zoom:

Register in advance for this meeting by clicking []

After registering, you will receive a confirmation email containing information about joining the meeting. Save that email (perhaps by saving it as  calendar appointment).

The confirmation email will be from Zoom and have the words "Meeting Confirmation" in the title.

TOPIC: How to 

People with Parkinson’s disease (PD) are at a higher risk of hospitalization and face many challenges while in the hospital. It is important for all people with Parkinson’s to be aware of the risks, prepare ahead of time and know how to advocate for their needs while in the hospital.Come to learn some tips to make your hospital stay safer and about the FREE Hospital Safety Guide from the Parkinson's Foundation.

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions to Glen Eddy

Use the main entrance. Park in the upper lot along the stone wall. Meeting room is on the second floor. Elevator and stairs are off the  lobby to the left.

This meeting will be a hybrid meeting.

If you are able, please attend in person. Registration is not required.

OR to attend by Zoom:

Register in advance for this meeting by clicking []

After registering, you will receive a confirmation email containing information about joining the meeting.

Please come to

Our Annual Picnic

Saturday, July 20, 2024, Noon to 3:00

The Crossings Park in Colonie

New this year:

All food will be provided!

• Sandwiches, salads, drinks, desserts

• Gluten free, vegan, vegetarian options available

Our group will subsidize costs, so the fee will be only $10 per person.

Please reserve by July 8, 2024

Reservations help us plan, but, if necessary, walk ins are welcome.

We will again welcome Saratoga Support Group members.

Activities!

Ping Pong (thanks to Mike K at All Plus Table Tennis) Corn Hole, Yoga (thanks to Deb Foss)

Picnic tables provided, BYO lawn chairs if desired.

Directions

Enter the Crossings Park from the main entrance on Albany Shaker Road.

Drive to the very end of the park road. You will find parking and the picnic there at the South Pavilion.

Click on this link to [Reserve and Pay]

Meeting: Thursday, June 13, 2024 -  7:00 - 8:30 p.m.

TOPIC: Resources on our website and spotlight on some exercise leaders

PRESENTERS: A panel of exercise leaders and website guide

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions to Glen Eddy

Use the main entrance. Park in the upper lot along the stone wall. Meeting room is on the second floor. Elevator and stairs are off the  lobby to the left.

This meeting will be a hybrid meeting.

If you are able, please attend in person. Registration is not required.

OR to attend by Zoom:

Register in advance for this meeting by clicking []

After registering, you will receive a confirmation email containing information about joining the meeting.

==========

Meeting notes

Newly diagnosed?

The “where to start” section of this page

https://www.cdparkinsons.org/newly-diagnosed

1. People don’t die from Parkinson’s. We live with it.

2. Everyone’s PD is different.

3. Exercise is important. You can find local exercise classes https://www.cdparkinsons.org/exercise

4. PD is a slowly progressing disease.  If you have sudden changes to your health, check with your physician- it’s probably not from Parkinson’s.

Hike with Terry -  An easy one mile hike Equal Access Nature Trail. Albert Family Community Forest Hayes Rd. East Nassau, NY 12062

Monday June 24, 2024 at 10:30 AM

https://www.cdparkinsons.org/events-1-1/june-24%2C-2024---hike-at-the-albert-family-community-forest

DBS lunch and learn Albany Med event - June 26

https://www.cdparkinsons.org/events-1-1/jun-26%2C-2024---lunch-and-learn---deep-brain-stimulation-(dbs)

Summer CDPSG Picnic - July 20

https://www.cdparkinsons.org/events-1-1/capital-district-parkinson's-support-group---summer-picnic

=====================

What  is “Be in the local PD know with groups.io” at the bottom of the home page?

Subscribe to our local email based discussion group

Did you know -

There is an associated website for the archived mail

https://groups.io/g/cdpsg

Your email address is your password.

There is a user manual https://groups.io/helpcenter/membersmanual

You can get a daily digest instead of individual messages

https://groups.io/helpcenter/membersmanual/1/controlling-your-email-subscription-preferences/email-delivery

You can also

https://groups.io/helpcenter/membersmanual/1/controlling-the-volume-of-email-messages-you

You can use the website to see, and search through the message archive.

https://groups.io/g/cdpsg/messages

Meeting:Thursday, May 9, 2024 -  7:00 - 8:30 p.m.

PRESENTER: Drug Rep for Duopa

TOPIC: Duopa is a prescription drug that treats Parkinson's disease (PD) by delivering carbidopa and levodopa directly into the small intestine through a surgically implanted tube. This gel is intended to improve absorption and reduce "off" times, which are changes in movement abilities as the levodopa dose wanes. Duopa bypasses the stomach, which can empty slowly and irregularly in Parkinson's, leading to poor absorption and unpredictable relief with drugs taken by mouth. 

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions 

Use main entrance. Park in upper lot along the stone  wall. Meeting room is on second floor. Elevator and stairs are off the  lobby to the left.

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy.

To attend in person, no registration required.

OR Attend by Zoom.

TO ATTEND BY ZOOM MEETING: [Register here].

Meeting:Thursday, Apr 11, 2024 -  7:00 - 8:30 p.m.

PRESENTER: Jill Cullen from the Guilderland YMCA

TOPIC: The importance of exerecise and information about the programs that the Capital  District YMCAs offer to people with movement disorders in particular. 

Did you know that you may be eligible for a free Silver Sneakers  membership to the Y? Check it out here.

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions 

==========

Notes from our 4/11/2024 meeting

Newly diagnosed? Here are five things to do or know right now.

1. See a movement disorders specialist (Albany Med has a handful of them)

If you haven’t done so already, it’s important to see a movement disorders specialist, especially if you have nagging symptoms that remain untreated despite your current therapies.

2. Exercise

Exercise is an important part of healthy living for everyone. For people with Parkinson’s disease  exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Exercise and physical activity can improve many PD symptoms and has been shown to delay the disease progression. These benefits are supported by research.

Find local, PD specific, exercise classes here:

https://www.cdparkinsons.org/exercise

3.  PD does not affect everyone the same way. The rate of progression and the particular symptoms differ among individuals.

4. Get the Davis Phinney Foundation “Every Victory Counts” book.

https://davisphinneyfoundation.org/every-victory-counts-manual/#evcorder

5. PD is a slowly progressive disease.
If you see health problems developing and changing quickly, see a doctor.

=========

Lifetime Achievement - Paul Tonko video 4 mins

https://youtu.be/duu_SduWjXk

Jill's slides

P4P Enrollment form

https://www.cdparkinsons.org/_files/ugd/304770_bea35098f411428c8cd4f43be733a7dc.pdf

NMW Enrollment form

https://www.cdparkinsons.org/_files/ugd/304770_c3e4521b0f3f4a41ad8a910309877f1e.pdf

John O'Leary website 

https://johnolearyinspires.com/

John's message to our group

https://youtu.be/UhgC0JZ6GgM?si=GrWj1t2hAY7U3viC

PRESENTER: John O'Leary - Once expected to die, John now teaches others how to live. Decades after the fire that almost took his life away, John now holds one of the greatest gifts of all: perspective. As an accomplished speaker, author and podcaster, John shares his perspective to awaken you to your life’s potential and energize you to live more thoughtfully, more boldly and more inspired.. John has pre-recorded a presentation for us. This meeting will be an opportunity for those in person and those online to discuss and respond to John's presentation in small groups.

TOPIC: In March 2016,  John O'Leary  published his first book, On Fire: The 7 Choices to Ignite a Radically Inspired Life, which became an instant #1 national bestseller. His second book, In Awe: Rediscover Your Childlike Wonder to Unleash Inspiration, Meaning and Joy, was also an instant #1 national bestseller when published in May 2020. His story has recently been turned into a full-length feature film scheduled for theatrical release in Fall 2024. Read more about John https://johnolearyinspires.com/

WHERE:  Glen Eddy senior residence,

1 Glen Eddy Drive, Niskayuna NY 12309

Directions 

Use main entrance. Park in upper lot along the stone wall. Meeting room is on second floor. Elevator and stairs are off the lobby to the left.

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy.

OR Attend by Zoom.

TO ATTEND BY ZOOM MEETING: [link removed]

Meeting: Thursday, February 8, 2024 -  7:00 - 8:30 p.m.

PRESENTER: Sarah Cohen, PT, DPT, Administrator, Center for Parkinson's Disease, Stony Brook Southampton Hospital

TOPIC: Falls Prevention and Parkinson's: What can you do to Stay Steady

People  living with Parkinson's disease are twice as likely as healthy older  adults to fall and demonstrate a nine-fold increase in recurrent falls.  Yet, falls are often preventable. Join us for this discussion on the why  we should care about falls, what are  the PD-specific falls risk factors, and most importantly, what you can  do to decrease your fall risk and stay steady!

WHERE:  Glen Eddy senior residence, 

1 Glen Eddy Drive, Niskayuna NY 12309

Directions 

Use main entrance. Park in upper lot along the stone wall. Meeting room is on second floor. Elevator and stairs are off the lobby to the left.

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy.

OR Attend by Zoom.

Meeting

SUBJ:  Dr. Kevin Mansfield, new neurosurgeon at Albany Medical Center, on deep brain stimulation for Parkinson’s treatment

(Regular monthly meeting of Capital District Parkinson’s Support Group)

WHEN:  Thursday, January 11, 2024, 7:00 - 8:30 p.m.

WHERE:  Glen Eddy senior residence, 1 Glen Eddy Drive, Niskayuna NY 12309

Kevin Mansfield, M.D. joined the Department of Neurosurgery at Albany Med in 2023. As a fellowship-trained functional neurosurgeon, Dr. Mansfield specializes in the surgical treatment of chronic conditions that affect a person’s functions and abilities, such as movement disorders. Dr. Mansfield will discuss deep brain stimulation (DBS), which involves placement of electrical devices that can directly change brain activity in a controlled manner. Questions and answers will be encouraged, and refreshments will be served.

Dr. Mansfield will be joined by Thomas Robb of Boston Scientific Corp., a leading DBS technology manufacturer.

Directions to Glen Eddy, 1 Glen Eddy Drive, Niskayuna:

Use main entrance. Park in upper lot along the stone wall. Meeting room is on second floor. Elevator and stairs are off the lobby to the left.

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy.

OR Attend by Zoom.

TO ATTEND BY ZOOM MEETING:

2023 Holiday Party Saturday, Dec. 2nd

at the Glen Eddy Senior Living Center

starting at noon and going through 3:00

Respond by Tuesday, November 21.

We have given the food order to the chef.

Registration is closed. 

Dr. Eric Molho, Director of Albany Medical Center’s Movement Disorder Center

Program: What’s current, what’s hot in Parkinson’s research, treatment, technology, etc. Question-and-answer format. Light refreshments served

This meeting will be a hybrid meeting.

You are encouraged to attend in-person at Glen Eddy 

OR Attend by Zoom.

Presented by:

• Patricia Stanley, Senior Analyst Community relation specialist with Atena 

• Sonde Wechgelaer, Licensed Sales Agent with OB 1 Insurance  agency.

Presented by Rosemary (Rose) Gallagher, PT, DPT, PhD
Associate Professor and Admissions Coordinator

Parkinson's Foundation Physical Therapy Faculty Scholar

New York Institute of Technology
Program in Physical Therapy

Rose has a passion for helping people with PD get out into  the wilderness. Whether you have done door activities in the past and have given them up, or you have found a way to stay connected with the wilderness, or you want to learn about the benifits of outdoor activities and how you can get started, this meeting is for you. 

This meeting will be a hybrid meeting.

You can Attend in-person at Albany Med OR Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

NOTE: change of presenters. The presentation on Deep Brain Stimulation will be January 11, 2024

TO ATTEND IN-PERSO/N AT ALBANY MED

Location: Huyck Auditorium at Albany Medical Center. (Directions)

• Register for in-person attendance (We  will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online

When: Sunday, August 27, noon to 3

Where: The Crossings Park, South Pavilion,

580 Albany Shaker Rd., Colonie, NY.

Our support group will provide assorted sandwiches, seltzer and water.

Please use the link below to sign up and to let us know what food you will bring.

We also need helpers - please sign up below if you can take on a task.

RSVP by August 21st. If you can't commit by the 21st, you are welcome to register later.

Directions:
Enter the park from Albany Shaker Rd. Follow the park road to it's end.

Tell us how many will attend

Sign up for the potluck

Presented by Kiera Druhan, MT-BC

Neurologic Music Therapist

MEDRhythms, Inc.

Neurologic Music Therapy (NMT)™ is the therapeutic application of music to cognitive, sensory, and motor dysfunctions due to neurologic disease of the human nervous system. NMT has developed standardized interventions and clinical techniques for the use of music to address non-musical goals such as mobility, speech, language, and areas of cognition. These techniques rely on the music perception and production for inducing neuroplastic changes in the brain. NMT has shown to be effective with a variety of populations including stroke, traumatic brain injury, Parkinson’s Disease, Multiple Sclerosis, and more.  This presentation will include a brief overview of the neuroscience of music as well as demonstrate several NMT treatment techniques and how you can incorporate them into everyday life.

This meeting will be a hybrid meeting.

You can

• Attend in-person at Albany Med OR

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium at AMC

In their work, Nina and Liz cover all the aspects of downsizing, from emotional issues, to decluttering,  to the specifics of the real estate process. 

This meeting will be a hybrid meeting.

You can

• Attend in-person at Albany Med OR

• Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium at AMC

Register for in-person attendance (We  will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online [link disabled for past meeting] and recieve the Zoom meeting link

==========

Resources mentioned in the meeting that may be helpful:

Transitioning from Driver to Passenger

From https://www.thehartford.com/resources/mature-market-excellence/dementia-driving

The Hartford Center for Mature Market Excellence® partnered with the MIT AgeLab to conduct research to bring clarity to the very serious and emotional issue of dementia and driving and to help drivers and their families plan a successful transition from driver to passenger.

When it’s time for loved ones with dementia to stop driving and how to help them cope with driving cessation. download or order your free copy of At the Crossroads (Family Conversations about Alzheimer’s Disease, Dementia & Driving).

Worksheets Excerpted From At the Crossroads Guidebook

• Agreement With My Family Worksheet

• Conversation Planner Worksheet

• Driving Activities Worksheet

• Getting There Worksheet

• Not Going It Alone Worksheet

• Warning Signs Worksheet

Senior Transportation Options Directory provided by the Albany Guardian Society

https://albanyguardiansociety.org/

Transportation is a vital link for seniors to remain active and independent in their community. New in 2021, the “Transportation Options for Senior Adults in the Capital Region” directory provides the name, contact information, specific services provided, hours of service, accommodations, and fees for the senior transportation options in Albany, Rensselaer, Saratoga, and Schenectady counties.

https://albanyguardiansociety.org/

==========

Join Dr. Robert Cochrane for an hour of fun, engagement and cognitively  challenging imrprovisation and storytelling games. Robert’s  evidence-based program was developed through a series of clinical trials in his doctoral studies in the Interdisciplinary Health Sciences  department at the University of Nevada Las Vegas. Parrticipants report  increases in confidence, creativity and communication. We also laugh a  lot. People with Parkinson’s, Care partners, family members and medical / wellness providers are all invited to join in as Robert’s approach  works to bring the whole PD community together to help us all get what  we need.

See more about Yes and.... Exercise (YAX) here https://www.yesandexercise.org/

Consider making a donation to YAX  Pay it forward https://www.yesandexercise.org/basic-01 

Read more about Robert and his 

This meeting will be a hybrid meeting.

You can 

• Attend in-person at Albany Med OR

• Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium at AMC

Register for in-person attendance (We will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to attend online and recieve the Zoom meeting link

Register to attend via Zoom 

Presented by 

Would  you like to understand Long Term Care?   This presentation will focus  on the different types of care available, associated costs and levels of  care. It will help  you understand senior housing care options, amenities, costs and levels  of care as well as home care options and costs. There will be a review  of funding options available to help pay for care that include VA  benefits, long term care (LTC) insurance and Medicaid.  You will also learn about other resources available in the community  that help supplement care; grants, day programs, and volunteer  organizations.

This meeting will be via Zoom only.  

 After registering, you will receive a confirmation email containing information about joining the meeting.

NOTE: ChoiceConnections does not charge the senior or their family a fee for their help, but if a senior moves to a community that a ChoiceConnections advisor recommends, then ChoiceConnections collects a one-time fee from that community. The fee is a percentage of the first month's rent. That fee does not affect the rent.

Meeting materials:

Choice Connections brochure

Long Term Care

VA disability compensation

+VA disability compensation (pay) offers a monthly tax-free payment to Veterans who got sick or injured while serving in the military and to Veterans whose service made an existing condition worse. You may qualify for VA disability benefits for physical conditions (like a chronic illness or injury) and mental health conditions (like PTSD) that developed before, during, or after service. Find out how to apply for and manage the Veterans disability benefits you've earned.

Get VA disability compensation (pay)

Manage your Veterans disability benefits

More information and resources

Other VA benefits and services

Get VA disability compensation (pay)
https://www.va.gov/disability/

How to Keep an Upbeat Attitude in a Challenging World

We  may not be able to control what happens to us, in us, and around us.  But we can control how we respond to the ups and downs of life, work,  and relationships. Unfortunately, 85% of the population are “reactors,”  who think “I can’t help the way I feel … or … That’s just the way things  are.” The truth is you can become one of the fortunate 15% of the  people who have learned to be an “actor” instead of reactor. In this  presentation, Dr. Alan Zimmerman will give us a series of simple but  effective techniques to build and maintain an effective, powerful,  positive attitude.  

This meeting was  offered by Zoom only. 

Get (13 page, 1008 KB PDF)  Presentation Materials 

How to Keep an Upbeat Attitude in a Challenging World

We  may not be able to control what happens to us, in us, and around us.  But we can control how we respond to the ups and downs of life, work,  and relationships. Unfortunately, 85% of the population are “reactors,”  who think “I can’t help the way I feel … or … That’s just the way things  are.” The truth is you can become one of the fortunate 15% of the  people who have learned to be an “actor” instead of reactor. In this  presentation, Dr. Alan Zimmerman will give us a series of simple but  effective techniques to build and maintain an effective, powerful,  positive attitude.  

This meeting was  offered by Zoom only. 

Get (13 page, 1008 KB PDF)  Presentation Materials 

This  presentation will provide an informational overview on LSVT BIG &  LSVT LOUD presented by physical therapists and a speech language  pathologist currently delivering this protocol to Parkinsons patients at  Samaritan Hospital - Albany Memorial Campus. We hope  you can join us to see how LSVT LOUD/BIG can benefit you!

• Mandy Dreisenstock, MSPT graduated from Russell Sage College/Sage Graduate School. Mandy has been a practicing physical therapist at Samaritan Hospital, The Albany Memorial Campus since 2005. She was certified as a Certified Fall Prevention Specialist in 2020 and as a LSVT BIG provider in 2021.

• Nikki Acierno, PT, DPT graduated from SUNY Geneseo with her B.A. and earned her DPT from University of Vermont. She has been a practicing physical therapist and LSVT BIG provider since 2021 at Samaritan Hospital, Albany Memorial Campus.

• Fatima Khan MA CCC-SLP graduated from SUNY New Paltz (B.A.) and SUNY Plattsburgh (M.A.). She has been a licensed speech language pathologist since 2020 and working at Samaritan Hospital, Albany Memorial Campus since 2021. 

CDPSG Holiday Party 2022

Come join us for food, desserts, and beverages; games; music and singing; fun and camaraderie on Saturday, December 10th at noon 

at the Delmar Reformed Church 

386 Delaware Ave, Delmar, NY.

Cost is $20 per person.

As a precaution to keep our community safe, please take an

at-home COVID rapid test on the morning of the event.

RSVP form -> https://docs.google.com/forms/d/e/1FAIpQLScdHt8yKqftHzFWCckCStisFGUWydF3iKf0bgYAnwt6WtZhPg/viewform

Payment form -> https://www.cdparkinsons.org/donate

November 10, 2022 7PM

Topic: How to Outsmart Parkinson's Disease: Tips & Tricks

Rebecca Gilbert, MD, PhD is Vice President, Chief Scientific Office for the American Parkinson Disease Association

The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder.

=============

Slides from Dr. Gilbert (PDF)

=============

This meeting was a hybrid meeting.

You can

• Attend in-person at Albany Med OR

• Attend by Zoom

Speaker: Dr. Eric Molho. Director of the AMC Movement Disorder Center.  
Topic: Current PD Research.

ink

Speaker: Patty McGee, RN, MSN and Integrative Nutrition Health Coach
Topic: Self Care is the New Health Care.

Slides presented at the meeting

https://www.cdparkinsons.org/_files/ugd/304770_7977ff5d9b6846038b5ec68e62367d8f.pdf

This meeting will be a hybrid meeting. 

You can

• Attend in-person at Albany Med OR

•  Attend by Zoom.

Not sure which you will do? Register for both to keep your options open.

TO ATTEND IN-PERSON AT ALBANY MED

• Location: Huyck Auditorium at Albany Medical Center.

• Directions to Huyck Auditorium

Register for in-person attendance (We will give this list of attendees to the AMC Security Desk, which will speed up your entry.)

TO ATTEND BY ZOOM MEETING

Register to receive Zoom link

Come join us for an afternoon of good food, friendship, and fun. This is a highlight of the CDPSG community calendar!

When:  Sunday, Aug 21, Noon to about 3:00 

Where:  South Pavilion, “The Crossings” Park, Colonie

Who:  Everyone in the Capital District Parkinson’s Community – even (especially!) if this is your first event.

contact Leah Purcell at leahpurcell257@gmail.com or 518-487-1536

Our theme this year is “Something Old, Something New.” We cherish our traditions, and we also welcome new experiences, especially with the support or our community.

• What’s new at our picnic this year? Instead of a big cook out, we’re having sandwiches as part of potluck.

• What are some of our picnic traditions? Good food, activities, and fun. We always welcome folks who are new to our community to the picnic; kids and grand-kids are welcome too!

There are many ways for everyone to pitch in before and during the event. We can't do it without you! Please fill out the picnic [form] today. 

Or contact Leah Purcell at leahpurcell257@gmail.com or 518-487-1536. 

DIRECTIONS:  Enter “The Crossings Park of Colonie, 580 Albany Shaker Road, Colonie, NY 12211. Once you enter the park, follow the park road all the way to it’s end, about 6/10 ths of a mile to the pavilion there.

Thanks,

Your Annual Picnic 2022 Organizers

Ian Wing, Sharon Wing, William Tuthill, Nancy Eson, Jud Eson, Art Kilmer, Leah Purcell

Find the handout here: https://6b5c317b-7039-42b7-970e-801d4bd877b0.filesusr.com/ugd/304770_f2a8b9b492144df0946de1ce1259d867.pdf

Our guest speaker will be Lynda Shrager,

Local author, occupational therapist, social worker and a Certified Aging in Place Specialist.

Her book, "Age in Place: Keep Mom and Dad Safe, Keep You Sane"

has been reviewed by the NY Times 

Book details here -->  https://www.goodreads.com/book/show/36205917-age-in-plac

======

Meeting handout - At Home for Life

Contact Lynda

Lynda Shrager, OTR, MSW, CAPS

email: lgshrager@aol.com   

cell:  (518)368-0322

check out my web site: http://otherwisehealthy.com

follow me on twitter: https://twitter.com/LyndaShrager

like my facebook page: https://facebook.com/theorganizedcaregiver

get tips on instagram: https://www.instagram.com/organizedcaregiver/

Our next meeting will be Thursday May 12, 2022 at 7:00 PM

Nancy Nealon from the Parkinson Foundation. Nancy is a licensed NYS social worker (LMSW). She has worked in the greater Rochester area for over 30 years with individuals living with chronic illness and disabilities, and with the Parkinson’s community specifically since 2015. Her mission is to bring education programs to the Parkinson’s community throughout New York and New Jersey.

Nancy will be walking us through the Parkinson Foundation’s on line PD Health@Home Events.

Below are the links to resources that Nancy Nealon from the Parkinson Foundation gave us at our May meeting. In case you missed it, Nancy walked us through the resources on the Parkinson Foundation website. We also had a lively discussion about the resources, including  the Aware in Care materials (see one of the  links below). Nancy was very gracious at our meeting and she's an enthusiastic and experienced supporter of people in the Parkinson's community. She is happy to answer questions from individuals via phone or email. 

Notes:
Parkinson's Foundation | Better Lives. Together.
Landing page/front page of website

Resources & Support | Parkinson's Foundation
Aware in Care kit will be found on this page

Parkinson's Foundation - YouTube
Direct link to the videos page on YouTube

Parkinson’s Foundation Online Courses | Parkinson's Foundation
The Care Partner’s Online resource/courses will be found here

PD Health @ Home | Parkinson's Foundation
This link will bring you to the landing page for Mindfulness Mondays, Wellness Wednesdays, Fitness Fridays

Nancy Nealon  nnealon@parkinson.org 585.743.4636

Thursday, April 14 at 7:00 PM EST

Topic: Nancy Hovey “Caring for the Caregiver” and

Mike Coyle - graduate student who is going to speak briefly about bridging the gap between the PD lab and people living with PD and their care partners.

Join us on ZOOM

Our Next Meeting will be Thursday, March 10 at 7:00 PM EST

Join us on ZOOM

Topic: Overview of the 6th edition of the "Every Victory Counts"® manual from the Davis Phinney Foundation presented by William Tuthill, president of our group, and Leah Purcell, VP.

First published in 2010, the Every Victory Counts® manual broke new ground as the only resource of its kind, devoted solely to the principle of proactive self-care and a holistic approach to managing Parkinson’s. Now in its sixth edition, the manual presents essential information about Parkinson’s plus dozens of topics that are frequently overlooked but critical to helping you live well. William and Leah will give an overview of the manual and highlight changes from previous editions. Then you'll have an opportunity to share your thoughts, if you like.

learn about the symptoms of Parkinson’s you don’t see, those that relate to the autonomic system.

Digestion, temperature regulation, blood pressure, perspiration—all relate to systems in your body that, ideally, work without your having to even think about them. In Parkinson’s, however, these autonomic systems can get thrown off track, leading to symptoms like constipation, nOH, fatigue, erectile dysfunction, pain, and more. In short, when your autonomic systems veer off course, your q

uality of life can suffer.

REGISTER NOW

To learn more and register for The Victory Summit Virtual Event: The Parkinson’s You Don’t See, click here.

https://davisphinneyfoundation.org/events/the-victory-summit-virtual-event-autonomic-responses/

Will be a ZOOM-only meeting
on Thursday, January 13, 2022 at 7:00 PM EST

There WILL NOT be an in-person meeting in January

Join our ZOOM session at 6:45 PM to chat before the official meeting start, if you would like.

Topic: financial planning

Speaker: Steven E Herweyer, Chartered Financial Consultant® Retirement Income Certified Professional® LPL Financial Planner

Long-term financial planning is important for everyone -- but it is essential if you are coping with the expense of a chronic illness, such as Parkinson's disease.

Contact info. for our speaker:

Steven E Herweyer

https://www.herweyerfinancial.com/

sherweyer@moneyfoundation.org

518-631-2569

Speaker bio

Steven Herweyer Bio

Born and raised in Central Virginia, Steven Herweyer has spent his life in service to others. A graduate of the Navy Nuclear Power Program, he spent 8 years and 8 months as a Nuclear Electronics Technician and submarine Reactor Operator onboard the USS Casimir Pulaski and USS Sturgeon. After serving in his country the U.S. Navy and 14 years of further experience as radiological control technician in the civilian nuclear industry, he entered the financial services industry in 2006 where he continues to serve his clients, assisting them to build and live better financial lives.

He combines the critical thinking learned from the Navy Nuclear Power Program with an ability to breakdown complex financial concepts into bite sized chunks that everyone can understand and put to practical use.

Steven is a Retirement Income Certified Professional® and Chartered Financial Consultant® as conferred by the American College. He helps clients develop financial plans to navigate their course towards their goals, whether they involve investments, financial planning, Medicare assistance, annuities or life insurance.

Steven also gives back to his community as a member of his local church and Rotary.

Securities offered through LPL Financial. Member FINRA/SIPC.

Capital District Parkinson's Support Group
Holiday Lunch
Saturday, December 11
12:00 – 3:00 PM
Delmar Reformed Church
386 Delaware Ave
Delmar, NY 12054
(Directions)

Let’s celebrate the end of 2021 together at a sit down lunch with a choice of three entrees.

Good music, games, prizes and the always popular Secret Santa gift exchange.

Cost is $20 per person.

We share our members’ COVID concerns and will be social distancing in a spacious venue.
We ask that guests wear masks when not eating.

RSVP no later than Friday December 3rd 
(Click if not attending, but  you would still like to PAY DUES or MAKE A DONATION)

Capital District Parkinson's Support Group
Holiday Lunch
Saturday, December 11
12:00 – 3:00 PM
Delmar Reformed Church
386 Delaware Ave
Delmar, NY 12054
(Directions)

Let’s celebrate the end of 2021 together at a sit down lunch with a choice of three entrees.

Good music, games, prizes and the always popular Secret Santa gift exchange.

Cost is $20 per person.

We share our members’ COVID concerns and will be social distancing in a spacious venue.
We ask that guests wear masks when not eating.

RSVP no later than Friday December 3rd 
(Click if not attending, but  you would still like to PAY DUES or MAKE A DONATION)

Thursday, November 11, 7 PM
Speaker: We will not have a speaker in order to allow each of us to speak and listen to each other.

This will be a hybrid meeting. Attend in-person at Albany Med or attend by Zoom.

Part I

For 15 minutes, you will be paired with another individual or couple. Zoomers will be put in a randomly assigned break-out room, two screens (2-4 people) per room.

Please use the time for each of you to share:

1. A brief description of your PD journey, and a bit about yourself.

2. One PD related issue you are struggling with right now,

3. One PD related issue you have dealt with successfully in the past.

PART II

For the next 15 minutes, repeat  new groupings, same questions as Part I.  Zoomers will be put in a different randomly assigned break-out room, two screens per room.

Common Parkinson’s Misconceptions

https://parkinsonfoundation.org/blog/common-parkinsons-misconceptions

Part III

Share with the whole group items that were helpful for you.

15 mins of feedback to the whole group.

===== Chat and notes from meeting

From  Leah and Kevin Purcell  to  Everyone:

I think we all know how attitude can affect symptoms. Alfred shared a breathing technique to help with restless leg in the night.

--- Jud --- I will try to follow up with Alfred to see how he does it.

From  Ian Wing  to  Everyone:

Thanks Leah  Many of us have restless legs so would be good to share

From  Ian Wing  to  Everyone:

Hope to see everyone at the holiday party - good food and lots of fun. The venue is large and so we will be able to socially distance as you prefer. Please RSVP as soon as possible so we can plan as accurately as possible

From Bill Wiles

ok, we'll check the website to see the rest of the 7 misconceptions. Thank you, Jud.

-- Jud -- We talked about 2 or three of these Common Parkinson’s Misconceptions

https://parkinsonfoundation.org/blog/common-parkinsons-misconceptions

From  Ben & Sharon Wiles  to  Everyone:

yes, we got the link to the community resources from you today in an email. It looks very comprehensive!

-- Jud --- This searchable listing put together by Alzheimer’s Association and AARP, will help you get easy access to resources, community programs and services.

Start your search here https://www.communityresourcefinder.org/

From  Ben & Sharon Wiles  to  Everyone:

I'm curious. How many people are live and in person tonight (not zooming)?

-- Jud --- 27 screenns (some with two peoplw watching) registered to attend by zoom. I think most actually attended, although some had technical difficulties.

I didn't actually count, but I am guessing aboout 25 in attendance at AMC

Thursday, November 11, 7 PM
Speaker: We will not have a speaker in order to allow each of us to speak and listen to each other.

This will be a hybrid meeting. Attend in-person at Albany Med or attend by Zoom.

Part I

For 15 minutes, you will be paired with another individual or couple. Zoomers will be put in a randomly assigned break-out room, two screens (2-4 people) per room.

Please use the time for each of you to share:

1. A brief description of your PD journey, and a bit about yourself.

2. One PD related issue you are struggling with right now,

3. One PD related issue you have dealt with successfully in the past.

PART II

For the next 15 minutes, repeat  new groupings, same questions as Part I.  Zoomers will be put in a different randomly assigned break-out room, two screens per room.

Common Parkinson’s Misconceptions

https://parkinsonfoundation.org/blog/common-parkinsons-misconceptions

Part III

Share with the whole group items that were helpful for you.

15 mins of feedback to the whole group.

===== Chat and notes from meeting

From  Leah and Kevin Purcell  to  Everyone:

I think we all know how attitude can affect symptoms. Alfred shared a breathing technique to help with restless leg in the night.

--- Jud --- I will try to follow up with Alfred to see how he does it.

From  Ian Wing  to  Everyone:

Thanks Leah  Many of us have restless legs so would be good to share

From  Ian Wing  to  Everyone:

Hope to see everyone at the holiday party - good food and lots of fun. The venue is large and so we will be able to socially distance as you prefer. Please RSVP as soon as possible so we can plan as accurately as possible

From Bill Wiles

ok, we'll check the website to see the rest of the 7 misconceptions. Thank you, Jud.

-- Jud -- We talked about 2 or three of these Common Parkinson’s Misconceptions

https://parkinsonfoundation.org/blog/common-parkinsons-misconceptions

From  Ben & Sharon Wiles  to  Everyone:

yes, we got the link to the community resources from you today in an email. It looks very comprehensive!

-- Jud --- This searchable listing put together by Alzheimer’s Association and AARP, will help you get easy access to resources, community programs and services.

Start your search here https://www.communityresourcefinder.org/

From  Ben & Sharon Wiles  to  Everyone:

I'm curious. How many people are live and in person tonight (not zooming)?

-- Jud --- 27 screenns (some with two peoplw watching) registered to attend by zoom. I think most actually attended, although some had technical difficulties.

I didn't actually count, but I am guessing aboout 25 in attendance at AMC

Art With Heart & Hope

A Storytelling Exhibition On Coping With Illness And Disability

October 28th, Saratoga Springs

Featuring "Ink" by Jud

In 2019, BMB launched this pop-up show to share the work of artists living with, and caring for those living with, illnesses and disabilities. Now an annual event and exhibition, Art with Heart & Hope celebrates those who channel complex feelings into expressive creations.

Art with Heart & Hope combines the healing power of art with the equally powerful component of storytelling. Works are displayed alongside written statements from the artists, who share the ways art helps them move beyond their personal battles with illness or disability.

httpshttps://www.beyondmybattle.org

Art With Heart & Hope

A Storytelling Exhibition On Coping With Illness And Disability

October 28th, Saratoga Springs

Featuring "Ink" by Jud

In 2019, BMB launched this pop-up show to share the work of artists living with, and caring for those living with, illnesses and disabilities. Now an annual event and exhibition, Art with Heart & Hope celebrates those who channel complex feelings into expressive creations.

Art with Heart & Hope combines the healing power of art with the equally powerful component of storytelling. Works are displayed alongside written statements from the artists, who share the ways art helps them move beyond their personal battles with illness or disability.

httpshttps://www.beyondmybattle.org

Meeting – Live on November 15, 2021 – Kathrin LaFaver, MD, FAAN, Neurologist – Saratoga Hospital, will speak on “Lifestyle Medicine for Brain Health.” 

Meeting – Live on December 20, 2021, Break-out session. Caregivers will be in one room, with those with Parkinson’s will be in another room.

Monthly, 3rd Monday 1:00 PM

Ballston Area Community Center

20 Malta Avenue, Ballston Spa, NY 12020

Kevin McCullough saratoga.parkinsons@gmail.com (518) 222-4247

Marie Thorne softballmom300@yahoo.com (518) 810-8483

https://www.cdparkinsons.org/community-events

Meeting – Live on November 15, 2021 – Kathrin LaFaver, MD, FAAN, Neurologist – Saratoga Hospital, will speak on “Lifestyle Medicine for Brain Health.” 

Meeting – Live on December 20, 2021, Break-out session. Caregivers will be in one room, with those with Parkinson’s will be in another room.

Monthly, 3rd Monday 1:00 PM

Ballston Area Community Center

20 Malta Avenue, Ballston Spa, NY 12020

Kevin McCullough saratoga.parkinsons@gmail.com (518) 222-4247

Marie Thorne softballmom300@yahoo.com (518) 810-8483

https://www.cdparkinsons.org/community-events

Older adults often express a desire to age-in-place. What does this mean and how can we accomplish this? Learn about simple steps you can take that will make your home safe and comfortable and help you maintain your independence.

Presenter: Lauren Harrington, Certified Aging-in-Place Specialist

Date: Friday, October 15, 2021

Time: 10:15 a.m. – 11:00 a.m.

Location: Senior Expo, Crossgates Mall, 1 Crossgates Mall Rd., 1st Floor, Guilderland, NY

Albany Guardian Society

Register https://events.r20.constantcontact.com/register/eventReg?oeidk=a07eid02c8s7180be88&oseq=&c=&ch=

Older adults often express a desire to age-in-place. What does this mean and how can we accomplish this? Learn about simple steps you can take that will make your home safe and comfortable and help you maintain your independence.

Presenter: Lauren Harrington, Certified Aging-in-Place Specialist

Date: Friday, October 15, 2021

Time: 10:15 a.m. – 11:00 a.m.

Location: Senior Expo, Crossgates Mall, 1 Crossgates Mall Rd., 1st Floor, Guilderland, NY

Albany Guardian Society

Register https://events.r20.constantcontact.com/register/eventReg?oeidk=a07eid02c8s7180be88&oseq=&c=&ch=

Thursday, October 14, 7 PM
Speaker: Dr. Eric Molho. Director of the AMC Movement Disorder Center.  
Topic: Current PD Research.

This meeting will be a hybrid meeting. Attend in-person at Albany Med or attend by Zoom.

TO ATTEND IN-PERSON MEETING
Location: Huyck Auditorium at Albany Medical Center
Directions:

• Park at the Physician's Pavilion lot on the west side of the hospital.

• Enter the building at the revolving door entrance to the "A" building.

• Follow the main corridor about halfway and turn left at the ceiling sign pointing to the Huyck Auditorium.

• Albany Med building map

TO ATTEND BY ZOOM MEETING
.....

Today’s medications are beneficial to many older adults. However, understanding what these medications are used for and recognizing their side effects can be challenging. This program will describe pharmacological interventions frequently used with older adults.

Presenter: Dr. Michael R. Brodeur, PharmD, BCGP, FASCP, Professor, Department of Pharmacy Practice Albany College of Pharmacy and Health Sciences

Date: Thursday, October 14, 2021

Time: 9:30 a.m. – 10:30 a.m.

Zoom Video Conference

Albany Guardian Society 

Register  https://events.r20.constantcontact.com/register/eventReg?oeidk=a07eibwbrqw84d58335&oseq=&c=&ch=

Empower Parkinson’s “Living an Active Life with Parkinson’s Disease” Conference

Date:  Friday, October 1, 2021

Place:  Ramada by Wyndam (Formerly the Holiday Inn)

441 Electronics Parkway

Liverpool, NY

Time:  8 AM – 2 PM

Registration and Vaccination Required
Registration:  August 6th through September 22nd

www.parkinsoncny.org

or by calling (315) 466-1249

3 Ways to Participate

In-Person

Ramada by Wyndam - 441 Electronics Parkway, Liverpool, NY

8 AM – 2 PM Friday, October 1, 2021

Registration & Vaccination Required

Registration open August 6th through September 22nd at

parkinsoncny.org or by calling (315) 466-1249

https://www.eventbrite.com/e/living-an-active-life-with-parkinsons-disease-annual-conference-registration-165310944485

Facebook Live

Join us on Facebook at Empower Parkinson Inc. to watch the conference live  starting at 9 AM on Friday, October 1, 2021 (no registration required)

Conference Website

Visit parkinsoncny.org in November 2021 to view this year’s conference speakers  and our Exhibitor Resource Gallery. (no registration required)

Dan Riley • Personal Perspective from a Person with PD

Dr. Saada • Dealing with Sleep and Agitation Issues

Julie Lombardi, PT, DPT/Liz Horton, PT, LSVT BIG Instructor • Working Through Freezing Becky Auyer, PT, CMC • The Reality of Caregiving

Chaya Charles, RD • Preventing and Handling Constipation

Pat Van Beveren, PT • The Future of Empower Parkinson Inc.

Exhibitor Resource Gallery

Meeting – Live Meeting on September 20, 2021

Monthly, 3rd Monday 1:00 PM

Ballston Area Community Center

20 Malta Ave, Ballston Spa, NY, 12020

 – Live meeting 9/20/2021 at 1 PM – New venue/new time

Kevin McCullough saratoga.parkinsons@gmail.com (518) 222-4247

Marie Thorne softballmom300@yahoo.com (518) 810-8483

https://www.cdparkinsons.org/community-events

Stand Up to Parkinson’s amateur Golf championship

Thursday, September 16, 2021

Saratoga National Golf Club

Price Chopper Market 32, BBL Construction, Exit 9 Wine & Liquor Warehouse, CDTA and Albany Med invite you to join Stand Up to Parkinson’s, Inc., for our second annual Amateur Golf Championship. 

Agenda

11:00 Registration, Lunch (included)

12:30 Shotgun Start

5:30   Dinner, Open Bar & Awards 

Information

Tim Lange, Director

standuptoparkinsons@gmail.com

518-466-8408 

Proceeds to benefit Albany Med Foundation research for Parkinson’s Disease

This event will be a two-person better ball format with prizes awarded for both net and gross divisions.  Net division will use handicaps. Golfers will enjoy a dinner and open bar cocktail reception at the Prime Restaurant included with their registration. The evening portion of the event, which will feature a silent auction and raffles, is also open to guests at an additional charge.

REGISTRATION

Deadline: September 9, 2021 ~ Limited to 60 teams

$250 per golfer for lunch, golf, tee gifts, dinner & cocktail reception

$80 for dinner and cocktail reception only

Register on line (recommended): www.standuptoparkinsons21.golfgenius.com

Or

Return the form below with check to      

Stand Up to Parkinson’s, Inc.

PO Box 137

Clifton Park, NY 12065

Names:

Golfer 1 ($250)________________________

Golfer 2 ($250)________________________

Check one:

_______Our two-person team will compete in the gross division (no handicap)

_______Our two-person team will compete in the net division (handicap below) 

For net division only: Handicap for Golfer 1 ______ Handicap for Golfer 2______

Dinner Guest Name(s) ($80 per)_________________

Amount Enclosed: $_____________

Cliff and Adrianne Hall are participating in the MJ Fox New England Parkinon's Ride on September 11, 2021 starting in Old Orchard Beach Maine. 

Help them raise funds

https://fundraise.michaeljfox.org/nepr2021/donate/

Type "Hall" as a selection in the participant box.

One-hundred percent of all donations will go directly towards The Michael J. Fox Foundation's high-impact Parkinson's research programs. Having raised over $7 million since inception, The New England Parkinson's Ride is the largest Team Fox single-day fundraising event - we couldn't do it without your support!

Our next meeting will be
Thursday, September 9 at 7:00 PM
Topic: a presentation about Duopa, a PD treatment option.

Beverwyck is closed to outside visitors until further notice.  This will be a hybrid meeting. Attend in-person at Albany Med or attend by Zoom.

TO ATTEND IN-PERSON MEETING
Location: Huyck Auditorium at Albany Medical Center
Directions:
Park at the Physician's Pavillion lot on the west side of the hospital

====

Notes

Is Duopa™ for Me? The Pros and Cons of the Duopa Pump

https://parkinsonsdisease.net/clinical/duopa-pump-carbidopa-levodopa-pros-cons

Davis Phinney - The benefits of duopa™ for people with Parkinson's

https://davisphinneyfoundation.org/the-benefits-of-duopa-for-people-with-parkinsons/

MJ Fox - Duopa

https://www.michaeljfox.org/news/duopa-levodopacarbidopa

Parkinson's Foundation - Duopa

https://www.parkinson.org/Understanding-Parkinsons/Treatment/Surgical-Treatment-Options/Duopa

APDA - The many formulations of Carbidopa/Levodopa

https://www.apdaparkinson.org/article/carbidopa-levodopa-formulations-and-parkinsons-disease/

Capital District Parkinson's Support Group

SUMMER PICNIC 

Saturday, August 21, 2021 at 12 PM

South Pavilion, “The Crossings” Park, Colonie

Come join us for an afternoon of good food, friendship and fun. It has been a long two years and we have a lot of catching up to do.

There is no charge and CDPSG will provide hamburgers, kosher hot dogs and vegetarian skewers. We will also provide soda and bottled water.

In 2019, members were generous and there was some food left over - please err on the side of lower amounts of food and keep track of your dish in order that you can take any leftovers home.

Volunteers

We will need 2 or 3 people to volunteer to cook and 3 or 4 others to assist with set up, take down and clean up.  Please let Ian Wing know if you are willing to assist. Email is above.

As in 2019 we are asking that each person/family unit/ group of friends bring appetizers, salads and desserts sufficient for your group and  1 or 2 others. These will be shared by all.  Please keep track of your dish so that you can take any left overs home.

If your last name begins with:

A - C    Please bring chips and dip

D - F     Please bring “non chip” appetizer e.g. veg tray, hummus

G - J     Please bring a starch salad - e.g. potato, pasta or rice

K - N     Please bring a green salad

O - R     Please bring coleslaw

S  - V     Please bring pie or cookies

W - Z     Please bring a dessert appropriate for a warm summers day e.g. fruit salad

We’re looking forward to a fun day.  

Directions:

Enter the park from the main entrance on Albany Shaker Road

(GPS 580 Albany Shaker Rd, Loudonville, NY 12211)

Follow the park road 6/10 mile to the end. 

You will see the pavilion from there.

Please use this form to confirm your attendance before August 16.

August 7, 2021 - Picnic at 6 PM Game at 7 PM

Join us for a Hope Soars fundraiser

at Joseph Bruno Stadium in Troy and help find a cure for Parkinson's Disease!

Benefiting the Hope Soars Parkinson's Research Fund at Albany Medical Center.

$30 ticket includes a seat, a BBQ dinner and a ValleyCats cap!

Tickets: Call Mark Burek at 518-428-0056

These 18" x 8" x 3/4" wooden serving boards are pretreated and the resin we use is food  safe. 

Start up your long awaited social gatherings with style and flair! You will wow your friends with your food presentation on your very  own handcrafted creation! They make fantastic hostess, bridal shower, new home, birthday, wedding gifts and so much more! 

We will be holding 2 days of workshops, with three time slots available each day. The events will run Saturday July 10th and Sunday July 11th from 10am-12pm, 1pm-3pm and 4-6pm each day. Our workshop capacity is 12 people per time slot. 

Please follow the google doc  link below to sign yourself up, or send me a direct message. We will have a variety of colored dyes and additives for you to choose from.  The cost of creating a serving board is $45. Participants will have to return at a later date to pick up their serving board, as it will be too  messy to transport.

https://docs.google.com/spreadsheets/d/1NpJVAlepJsZfgx_djIoCYJVUvae0LLqNcg_jtzB_-7Y/edit?usp=sharing 

The Event will be hosted by Adrienne’s Artistic Experiences at 18 Robinson Rd Glenville NY 12302.

For more information please go to Adrienne’s Artistic Experiences on Facebook or email Adrienne at artmom2@live.com

These 18" x 8" x 3/4" wooden serving boards are pretreated and the resin we use is food  safe. 

Start up your long awaited social gatherings with style and flair! You will wow your friends with your food presentation on your very  own handcrafted creation! They make fantastic hostess, bridal shower, new home, birthday, wedding gifts and so much more! 

We will be holding 2 days of workshops, with three time slots available each day. The events will run Saturday July 10th and Sunday July 11th from 10am-12pm, 1pm-3pm and 4-6pm each day. Our workshop capacity is 12 people per time slot. 

Please follow the google doc  link below to sign yourself up, or send me a direct message. We will have a variety of colored dyes and additives for you to choose from.  The cost of creating a serving board is $45. Participants will have to return at a later date to pick up their serving board, as it will be too  messy to transport.

https://docs.google.com/spreadsheets/d/1NpJVAlepJsZfgx_djIoCYJVUvae0LLqNcg_jtzB_-7Y/edit?usp=sharing 

The Event will be hosted by Adrienne’s Artistic Experiences at 18 Robinson Rd Glenville NY 12302.

For more information please go to Adrienne’s Artistic Experiences on Facebook or email Adrienne at artmom2@live.com

Topic - "Your Doctor and You"

Guided discussion about how to prepare and get the most out of a Dr visit.

and

Discussion about what you expect from support group meetings. What you like, what you don't like and what will keep you attending.

IN PERSON MEETING!!

Location: Huyck Auditorium at Albany Medical Center

Directions:

Park at the Physician's Pavillion lot on the west side of the hospital

Valet parking may be available

Enter the building at the revolving door entrance to the "A" building.

Follow the main corridor about half way and make a left turn at the hall leading to the Huyck Auditorium.

Albany Med building map

https://www.amc.edu/bacc/upload/Albany-Med-Main-Campus-Map.pdf

Topic - "Your Doctor and You"

Guided discussion about how to prepare and get the most out of a Dr visit.

and

Discussion about what you expect from support group meetings. What you like, what you don't like and what will keep you attending.

IN PERSON MEETING!!

Location: Huyck Auditorium at Albany Medical Center

Directions:

Park at the Physician's Pavillion lot on the west side of the hospital

Valet parking may be available

Enter the building at the revolving door entrance to the "A" building.

Follow the main corridor about half way and make a left turn at the hall leading to the Huyck Auditorium.

Albany Med building map

https://www.amc.edu/bacc/upload/Albany-Med-Main-Campus-Map.pdf

There will be a memorial to remember our dear friend
Thomas R. Stephany
Saturday, June 26th at 1 PM
Paint Mine Picnic Area at Thatcher Park

There's no science fiction here.

The fast-growing field of devices that change your nerve activity by sending electrical signals to a specific area in your body, according to the International Neuromodulation Society.

From neuromodulation comes a therapy called a deep brain stimulation (DBS). For people living with Parkinson's disease and essential tremor, deep brain stimulation can be a revelation as they manage complex medical conditions, transforming their lives for the better.

Join us  to learn more about DBS and how it's enhancing the lives of people with Parkinson's disease and essential tremor.

Albany Med seminar

Free Seminar for Parkinson's Patients and Families

Date: Saturday, June 05, 2021

Time: 9am to 12:30 pm

Location:

Contact name: Sara Rindenello

Contact phone: 518-264-4257

Contact email: rindens@amc.edu

Details:

Moving Forward Together is a free virtual program for people living with Parkinson’s disease and their caregivers. The program is supported by a community grant from the Parkinson’s Foundation. Use the link to register and to join Webex on the day of the event.

More info: https://albanymed.webex.com/albanymed/onstage/g.php?MTID=eef7605de54532bacca01c08bffcee179

https://www.worldpdcoalition.org/page/WPCVirtual#ABOUT

Monday - Friday, May 17 - 21, 2021

The WPC Virtual: Advancing Science, Care, & Living with Parkinson’s online congress will take scientific updates and connectivity to a new level. We are thrilled to announce this first ever virtual Congress from the WPC that will rival the quality and content of what we offer in person. While in-person World Parkinson Congresses will continue to take place every three years, these WPC Virtual Congresses will now take place annually in the years between the live WPCs, meaning that every year, without fail, you can access timely, forward thinking Parkinson's talks that will inspire you and give hope to the millions of people living globally with Parkinson's.

Program dates: Monday - Friday, May 17 - 21, 2021.

Topics presented during this five-day virtual program will include updates on: Basic Science, Clinical Science, Treatment Options, Comprehensive Care, and Living with Parkinson’s. The program will also include two 4-part wellness series as part of the week, looking at PT wellness and Speech/Voice wellness. Talks will be forward thinking and delivered by both well recognized and up and coming leaders in the Parkinson’s space.

REGISTRATION

Registration is now open!
Recommended for registrants to use Google Chrome for optimal viewing.

REGISTER HERE

Registration to attend the WPC Virtual congress will be USD $25. This will include access to all 20 pre-taped sessions, with three talks in each session, as well as all 20 live Q&A panels and both Wellness talk series on fitness and voice.

Thursday, May 13, 2021 7:00 p.m. Eastern Daylight Time

Stephanie Longston, Occupational Therapist, Certified Stroke Rehabilitation Specialist, LSVT BIG Certified

Albany Medical Center Outpatient Occupational Therapy

Please call (518) 262-9700 to make an appointment.

Hours are Monday - Thursday, 7 a.m. - 7 p.m.

                      Friday -  7 a.m. - 3:330 pm.

Albany Med’s Outpatient Occupational Therapy services are located at 99 Delaware Ave. Delmar NY, 12054.

Overview of the OT clinic and the functional living environment, including a kitchen and bath tub, equipped with adaptive equipment people can try out before deciding if they want to purchase for home. Stephanie will be able to give a virtual tour of the OT clinic, showcase the equipment, and take questions.

Stephany demonstrated many tools and products that can be used to enhance quality of live and independance.

Notes:

Q. is there a store or catalog that sells this?
A. Amazon or Bed Bath and Beyond or other stores

Q. Are OT sessions covered by insurance?
A. Yes. Same as PT. There may be a co-pay. You need a Dr. referral,

Q. Please explain a little more about the help for driving.
A. Albany Med has a complete driver evaluatuon program including a driving simulater.

Q do you go to a person's home to evaluate their situation and what may be needed, say in the kitchen or bedroom

A. No. We do outpatient here. If you are housebound there is in home OT available.

Q. thank you!

From  Stephanie Longston  - info about devices

https://handsteady.com/en-us/

https://essentialtremor.org/resource/assistive-devices/#1583851656463-338a3eab-8753

https://www.caregiverproducts.com/body-care-grooming-kit.html

https://steadiwear.com/blogs/essential-tremors-in-daily-life/parkinson-adaptive-equipment

Some people were talking about the art activities at

Paul Nigra Center for Creative Arts

2736 NY-30, Gloversville, NY 12078 | P: (518) 661-9932 | E: mayl@thearclexington.org

https://www.pncreativeartscenter.org/

Dr. Michele Dagostine, of the Hartford HealthCare Medical Group, Chase Family Movement Disorders Center, along with Adamas Pharmaceuticals Inc., maker of Gocovri (amantadine extended release capsules). On Feb. 1 the FDA approved Gocovri to also treat “off” episodes in patients taking Levodopa.

Program

Prescribing information

Dr. Sarah Cipperly, PT, DPT

website: https://www.choiceptny.com/

email: sarah@choiceptny.com

Having grown up in Troy, NY, Sarah has returned to the capital district after graduating with her Doctorate of Physical Therapy. Sarah attended Nazareth College in Rochester, NY, where she was the captain of both the women’s soccer and softball teams. Since graduating Sarah has become a Certified Clinician for the LSVT BIG Program, SFMA and a Certified Clinical Instructor.

Improv, or "the art of composing, uttering, executing, or arranging anything without previous preparation” (Dictionary.com)

Michael Burns - will teach us to laugh and show us a fun, low-pressure way to reduce your anxiety, build resilience, improve your connection with other people, and strengthen our ability to adapt to life on life’s terms.

Speaker: Fran Weiss - Dietitian for Hannaford, Registered Dietitian,  Fran will speak about nutrition in general, but focusing on older people and Parkinson's diet needs.  Do you want to make healthy decisions about what you eat?  Did you know that what you can eat can help keep your immune system strong?  And also that nutrition can influence blood pressure management?  Join Fran Weiss, MS, RDN, CDN from Hannaford as she discusses the impact of good eating on overall health.

Frances Weiss  Frances.Weiss@hannaford.com

Speaker: Fran Weiss - Dietitian for Hannaford, Registered Dietitian,  Fran will speak about nutrition in general, but focusing on older people and Parkinson's diet needs.  Do you want to make healthy decisions about what you eat?  Did you know that what you can eat can help keep your immune system strong?  And also that nutrition can influence blood pressure management?  Join Fran Weiss, MS, RDN, CDN from Hannaford as she discusses the impact of good eating on overall health.

Frances Weiss  Frances.Weiss@hannaford.com

Let’s CELEBRATE the end of 2020 and look forward together to a happy and hopeful new year.

If you have never been to one of our meetings, this would be a good one to start with.

DRESS UP in your best holiday gear! PRIZES for the most festive!

FOOD - Make your favorite holiday appetizer or cookie and sit back with a celebratory cocktail or mocktail!

Ian and Sharon are sharing their snacks.

SHARE YOUR TALENTS – a story, your favorite holiday tradition, a song or a joke.

GAMES - William and Greg are organizing a fun game with great prizes.  Ian will test your trivia knowledge again.

PRIZES will be mailed to you after the party.

Please download the Game instructions

and the Trivia answer sheet

And we’ll hear from BRUCE Plotzky again.

So SAVE THE DATE and get ready for an evening of ZOOM fun together!

Make or share some Party recipes

Dr. Robert Fox has been in practice in the Capital Region Area since 1986. Dr. Fox has completed a residency in Rehabilitative Optometry and is a Fellow of the College of Optometrists in Vision Development (FCOVD). He is board certified in Vision Therapy and Vision Development. Dr. Fox is a charter member of the Neuro-Optometric Rehabiliation Association (NORA). 

=======================

PD and vision articles:

==========

Davis Phinney Foundation

https://davisphinneyfoundation.org/i-have-parkinsons-and-am-experiencing-x-who-should-i-see/

Your issues may be related to the aging of the eye, but there are several issues related to vision that are unique to people with Parkinson’s. So, if you go to your general ophthalmologist, but the problem isn’t solved with new (or first) lenses, ask for a referral to a neuro-ophthalmologist. Neuro-ophthalmologists are ophthalmologists or neurologists who have received specialized training so they can diagnose and treat vision issues that are the result of neurological diseases.

Vision issues a neuro-ophthalmologist can help you with:

Eye movement issues that impact reading, depth perception, ability to focus, etc.

Blinking abnormalities

Dry eyes

External eye disease

Color vision deficits

Visual disturbances

General eye diseases such as cataracts, glaucoma, macular degeneration

==========

APDA

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/eye-vision-issues/

==========

Parkison.org

https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Vision-Changes

==========
MJ Fox - Webinar: “Vision Problems in Parkinson’s Disease” April 2019 

https://youtu.be/8rcZN6wVDJc

==========

MJH Life Sciences

https://www.mjhlifesciences.com/

Patients with Parkinson disease were found to be more likely to experience vision and eye issues, such as blurry vision, dry eyes, trouble with depth perception, and problems adjusting to rapid changes in light, compared with people without the disorder, according to study findings.

==========

National Center for Biotechnology Information

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6597980/

Visual disorders like double vision, dry eyes, and visual field deficits are common but frequently missed in Parkinson’s disease. Here, we aim to increase awareness for these visual disorders in Parkinson patients by discussing several common problems that can be easily diagnosed using comprehensive history taking and a basic neuro-ophthalmological examination. We offer practical guidance for the patient interview and physical exam that can facilitate a timelier recognition of visual disorders. Such recognition has immediate therapeutic relevance, because Parkinson patients are strongly dependent on an adequate vision, for example to optimally benefit from visual cueing strategies.

==========

World Parkinson’s Congress

https://www.worldpdcongress.org/home/2018/4/25/vision-disorders-in-parkinsons-disease-and-clinical-implications

Among the most common visual and ocular symptoms associated with PD are dry eye and ocular surface irritation, a problem that may be prevalent in as many as 60% of patients.1 This is thought to not only be related to poor production and abnormal composition of tears, but also due to decreased blink rate with resultant subnormal tear distribution.2 Parkinson’s patients have also been reported to have problems with eye movements, especially convergence insufficiency.

Dr. Robert Fox has been in practice in the Capital Region Area since 1986. Dr. Fox has completed a residency in Rehabilitative Optometry and is a Fellow of the College of Optometrists in Vision Development (FCOVD). He is board certified in Vision Therapy and Vision Development. Dr. Fox is a charter member of the Neuro-Optometric Rehabiliation Association (NORA). 

=======================

PD and vision articles:

==========

Davis Phinney Foundation

https://davisphinneyfoundation.org/i-have-parkinsons-and-am-experiencing-x-who-should-i-see/

Your issues may be related to the aging of the eye, but there are several issues related to vision that are unique to people with Parkinson’s. So, if you go to your general ophthalmologist, but the problem isn’t solved with new (or first) lenses, ask for a referral to a neuro-ophthalmologist. Neuro-ophthalmologists are ophthalmologists or neurologists who have received specialized training so they can diagnose and treat vision issues that are the result of neurological diseases.

Vision issues a neuro-ophthalmologist can help you with:

Eye movement issues that impact reading, depth perception, ability to focus, etc.

Blinking abnormalities

Dry eyes

External eye disease

Color vision deficits

Visual disturbances

General eye diseases such as cataracts, glaucoma, macular degeneration

==========

APDA

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/eye-vision-issues/

==========

Parkison.org

https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Vision-Changes

==========
MJ Fox - Webinar: “Vision Problems in Parkinson’s Disease” April 2019 

https://youtu.be/8rcZN6wVDJc

==========

MJH Life Sciences

https://www.mjhlifesciences.com/

Patients with Parkinson disease were found to be more likely to experience vision and eye issues, such as blurry vision, dry eyes, trouble with depth perception, and problems adjusting to rapid changes in light, compared with people without the disorder, according to study findings.

==========

National Center for Biotechnology Information

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6597980/

Visual disorders like double vision, dry eyes, and visual field deficits are common but frequently missed in Parkinson’s disease. Here, we aim to increase awareness for these visual disorders in Parkinson patients by discussing several common problems that can be easily diagnosed using comprehensive history taking and a basic neuro-ophthalmological examination. We offer practical guidance for the patient interview and physical exam that can facilitate a timelier recognition of visual disorders. Such recognition has immediate therapeutic relevance, because Parkinson patients are strongly dependent on an adequate vision, for example to optimally benefit from visual cueing strategies.

==========

World Parkinson’s Congress

https://www.worldpdcongress.org/home/2018/4/25/vision-disorders-in-parkinsons-disease-and-clinical-implications

Among the most common visual and ocular symptoms associated with PD are dry eye and ocular surface irritation, a problem that may be prevalent in as many as 60% of patients.1 This is thought to not only be related to poor production and abnormal composition of tears, but also due to decreased blink rate with resultant subnormal tear distribution.2 Parkinson’s patients have also been reported to have problems with eye movements, especially convergence insufficiency.

Speaker: Dr. Eric Molho 

Dr. Eric Molho is Director of one of the only comprehensive Movement Disorders and Parkinson’s Disease Centers in New York State. His practice is almost exclusively devoted to treating Parkinson’s disease, tremor, and dystonia, as well as other movement disorders. Dr. Molho has served as the principal investigator on numerous clinical trials for Parkinson’s disease, enabling him to offer the most advanced treatments and knowledge to his patients. 

Announcements and notes for meeting

Welcome

Welcome new members and visitors

Gratitude for our Doctors at the MD Center at AMCH and our PD community

Next meetings will be:

• https://www.cdparkinsons.org/next-meetings

Community

Last year 10 people from the Albany area PD community travelled to Tokyo to attend the 5th WPC.  We bonded, learned and saw the sights.

Save the date

Will you join us at the 6th World Parkinson Congress to be held in Barcelona, Spain from June 7– 10, 2022. More than 3,000 people from 60+ countries are expected to attend the WPC 2022. Delegates will be those who are dedicated to understanding, researching, treating, and curing Parkinson’s disease (PD), including those who are living with it.

Nancy Eson: We would like to gage interest in a  care partner support group. If you are interested in knowing more, joining or leading this type of group, contact us through the website https://www.cdparkinsons.org/

Dr. Molho will take questions through chat.  You will be muted to avoid distractions.

Dr. Molho has graciously agreed to be speaker at our October meeting for at least the last five years (I don’t have records before that) and has been an excellent source of PD education for us.

Dr. Molho is the director of the Parkinson's Disease and Movement Disorders Center and currently serves as a professor of neurology and the Riley Family Chair in Parkinson’s Disease.

Dr. Molho (thank you William for the fantastic notes)

William’s notes on the Capital District Parkinson’s Disease Support Group meeting, Thursday, October 9, 2020:

Turnout: At one point we were at 45 Zoom screens, representing  60-70 people. I don’t know where we’d put everyone in a face-to-face meeting ;-)

WPC 2022: Dr. Molho promoted the next World Parkinson’s Congress, to be held in Barcelona June 7-10, 2022.

COVID-19 and PD: Dr. Molho’s office gets updates 2X a week on NYS and local Coronavirus and Covid-19 numbers. The state continues to report low rates of infection and hospital admissions, but Eric reminded people to stay vigilant and not get lax on prevention and protection measures. Some parts of the state are reporting new spikes and clusters. People with PD are reported to be at higher risk, but that is likely more due to age and other risk factors than due to PD by itself. People must assess their own level of comfort with risk, and use common sense when determining how physically intimate to get with grandchildren and other loved ones.

COVID-19 and ongoing PD treatment at Albany Medical Center: Ninety percent of consultations are currently in-person at the Mov’t Disorders Center. Of course, that number could change if the pandemic environment changes in the Fall and Winter. All safety and prevention protocols are being strictly observed. Nursing homes and hospitals have normalized their visiting policies, a loosening from the lockdown of the early months of the pandemic starting in March 2020.

Effects of pandemic on ongoing PD research & clinical trials at AMC: The initial lockdown bogged down such projects, as suddenly extra precautions and risk reduction had to be rushed into place for everyone. Things have started up again, however. For comprehensive list of clinical trials, see website  https://clinicaltrials.gov/ referenced in the Chat below. Here is a summary of Dr. Molho’s discussion of the major studies going on at Albany Med:

— The KARMET Study (aka the "Poop Study") on constipation and PD, being conducted with the firm Enterin Inc., looking at early involvement of the enteric nervous system in PD. This is a novel therapy, involving a compound that interacts with alpha synuclein protein. For more information or if interested in participating, contact Dr. Molho’s office.

— Motor Fluctuations Study, looking at “On/Off” states and working on treatment to level out the fluctuations. Could involve a combination of long-acting Levodopa and short-acting Levodopa. This would be an improvement on the currently-prescribed drug Rytary. The monitoring of symptoms by participants in this study is demanding, Dr. Molho said.

— Trial of a completely new drug, Cerevel, specific to the D-1 receptors. This study is just getting off the ground

— Federally-funded study to develop automated way of looking at brain MRIs to try to more accurately distinguish PD from other neurodegenerative disorders like PSP and MSA.

— A Study to Evaluate the Efficacy of Prasinezumab (RO7046015/PRX002) in Participants With Early Parkinson's Disease (PASADENA)

https://clinicaltrials.gov/ct2/show/NCT03100149

**N.B.: You can get a sheet from the AMC Movement Disorders Center listing and describing all the clinical trials Albany Med is involved in for PD and other neurological disorders.**

Q&A with Dr. Molho: Exercise, exercise, exercise. “There is no proven way to slow the progression of PD other than exercise.” A mixture of aerobic and resistance training. Stationary bikes, yoga etc. etc. Importance of finding an exercise activity you enjoy — otherwise you won’t do it.

Stem cell treatments: Some exciting prospects but even more unknowns and unintended outcomes

Probiotics and probiotics for constipation: Can work for some people but not for others.

— 30 —

Annotated chat below:

18:56:55  From  Carissa O'Rourke : I am doing LSVT but will be going out on maternity leave next week. There is a physical therapist at Albany memorial doing it. her name is Janet and we’ve been working together

19:10:49  From  Manuel Cruz and Suzanne Roberson : Can Dr. Molho speak to the benefits of exercise?

19:11:12  From  Thomas Estep  to  Nancy and Jud(Privately) : My name is Thomas Estep, I am a representative with Amneal Pharmaceuticals in Albany.  I can have speakers present at other meetings. My email is Thomas.estep@amneal.com.  518-506-8930.

19:30:06  From  Kristi LaMonica : Are new clinical trials listed on the AMC movement disorders webpage?

19:34:46  From  Nancy and Jud : https://clinicaltrials.gov/

19:40:23  From  Nancy and Jud : https://www.nourianz.com/ ?

19:49:22  From  Steve & Tracy : what is the value of the https://www.apdaparkinson.org/article/what-is-a-datscan-and-should-i-get-one/

19:49:49  From  Steve & Tracy : what is the unified Parkinson rating scale? https://en.wikipedia.org/wiki/Unified_Parkinson%27s_disease_rating_scale

19:51:26  From  Kristi LaMonica : will AMC be part of the monoclonal studies? Also for the D1 drug, a patient can’t be on meds at all?

19:51:27  From  Steve & Tracy : what in the digestive tract causes the growth of alpha-sinucleans?

19:57:39  From  Bruce Plotsky : What are your thoughts on 'young plasma'? https://parkinsonsnewstoday.com/2020/07/22/young-plasma-infusions-safe-potentially-helpful-parkinsons-patients-phase-1-trial/

20:01:08  From  Steve & Tracy : if someone exercised 30 min/day before being diagnosed, should they increase the intensity and/or daily duration after diagnosis?

https://www.parkinson.org/Understanding-Parkinsons/Treatment/Exercise

https://davisphinneyfoundation.org/high-intensity-exercise-slows-parkinsons-progression/

20:03:33  From  JoAnne Stanoski : could you, please discuss stem cell, laser treatment & the use of oxygen ( hyperbaric ) treatment for park. thanks

20:07:16  From  JoAnne Stanoski : as an FYI for everyone, I did a probiotic regime a while ago & now have no problem/issues w/constipation.

20:09:21  From  Manuel Cruz and Suzanne Roberson : Any promise from fecal transplants?

20:13:14  From  JoAnne Stanoski : are there any new things  (treatments) going on in Europe that we don’t have here?

20:22:46  From  Victoria Plotsky : Thanks Dr Molho!! : )

20:23:02  From  Carissa O'Rourke : thank you! great information

20:23:40  From  Kristi LaMonica : Thank you!

Speaker: Dr. Eric Molho 

Dr. Eric Molho is Director of one of the only comprehensive Movement Disorders and Parkinson’s Disease Centers in New York State. His practice is almost exclusively devoted to treating Parkinson’s disease, tremor, and dystonia, as well as other movement disorders. Dr. Molho has served as the principal investigator on numerous clinical trials for Parkinson’s disease, enabling him to offer the most advanced treatments and knowledge to his patients. 

Announcements and notes for meeting

Saratoga County

Monday - Sept 21, 2020 ZOOM 2:00PM – Brain Games – Marie Thorne will be showing some brain games and showing everyone how to do starfish to help us all relax. Please have a deck of cards available at the meeting. If you have a favorite game would like to share have it available. We are going to leave some time to discuss our summer and how everyone has dealt with Covid.

If you are interested in joining this meeting please e-mail Kevin McCullough at

saratoga.parkinsons@gmail.com or Marie Thorne at softballmom300@yahoo.com to get the Zoom meeting room and passcode.

Care Management: Strategies for Successful Aging

Hear how working with an Aging Life Care Professional (ALCP) can offer you optimal success in identifying and planning for the many potential challenges of aging. A care manager can help ensure the quality of life you choose to create and minimize the need to face crises unprepared.

Presenter: Tanya Zelman Schwartz, LCSW-R, C-ASWCM, Care Manage for All LLC.

Tanya Schwartz, LCSWR, C-ASWCM

Advanced Professional Member of ALCA

Care Manage for All, LLC.

518-512-9679

TanyaZelmanSchwartz@gmail.com

Come join us for an afternoon of good food, friendship, and fun. This is a highlight of the CDPSG community calendar!

When:  Sunday, Aug 21, Noon to about 3:00 

Where:  South Pavilion, “The Crossings” Park, Colonie

Who:  Everyone in the Capital District Parkinson’s Community – even (especially!) if this is your first event.

contact Leah Purcell at leahpurcell257@gmail.com or 518-487-1536

Our theme this year is “Something Old, Something New.” We cherish our traditions, and we also welcome new experiences, especially with the support or our community.

• What’s new at our picnic this year? Instead of a big cook out, we’re having sandwiches as part of potluck.

• What are some of our picnic traditions? Good food, activities, and fun. We always welcome folks who are new to our community to the picnic; kids and grand-kids are welcome too!

There are many ways for everyone to pitch in before and during the event. We can't do it without you! Please fill out the picnic [form] today. 

Or contact Leah Purcell at leahpurcell257@gmail.com or 518-487-1536. 

DIRECTIONS:  Enter “The Crossings Park of Colonie, 580 Albany Shaker Road, Colonie, NY 12211. Once you enter the park, follow the park road all the way to it’s end, about 6/10 ths of a mile to the pavilion there.

Thanks,

Your Annual Picnic 2022 Organizers

Ian Wing, Sharon Wing, William Tuthill, Nancy Eson, Jud Eson, Art Kilmer, Leah Purcell

Speaker: Donna Stressel, OT, of Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program.

Multiple studies have shown that drivers over age 60 are generally some of the safest on the road. They are more likely to avoid unsafe behaviors such as speeding, driving under the influence of alcohol, talking on cell phones, and not wearing seat belts. That said, it is important for elderly drivers, and their loved ones, to make sure they are road-ready and driving as safely as possible. 

Sunnyview Rehabilitation Hospital’s Driver Rehabilitation Program offers a comprehensive array of services for elderly drivers, adolescents with learning needs, and the disabled, including clinical assessment, on-the-road evaluation, driver rehabilitation and consultation/education about adaptive driving services. For more information on the program or CarFit programs in the area, call 518-386-3601.

-----------

Resources

Parkinson.org

https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Activities-of-Daily-Living/Driving

Davis Phinney

https://www.davisphinneyfoundation.org/blog/how-long-can-i-keep-driving-if-i-have-parkinsons/

M.J. Fox

https://www.michaeljfox.org/news/ask-md-driving-and-parkinsons-disease

Summer Picnic – CANCELLED

The Town of Colonie has cancelled all pavillion reservations for the summer.

Martel Catalano - founder of  https://www.beyondmybattle.org 

BMB provides support services and educational resources to foster engaged coping methods such as introspection, communication, and self-care.  Martel will speak about the founding, philosophy and services provided by the organization.

How stress and anxiety are related to Parkinson’s and what you can do about it.

We will discuss these two short articles and we will share our own ideas about handling stress.

1. https://www.apdaparkinson.org/article/stress-anxiety-parkinsons-disease/

2. https://www.parkinson.org/pd-library/fact-sheets/Stress-Management-for-PD

Meeting at Mr. Bill’s, 3 Trieble Ave, Ballston Spa, NY 12020,

(518) 885-7888,  mrbillscarhop.com Meet and Greet

Monday 2:00 PM – June 15

No meeting July and August

Woodlawn Commons

156 Lawrence Street

Saratoga Springs, NY 12866

Kevin McCullough saratoga.parkinsons@gmail.com (518) 222-4247

Marie Thorne softballmom300@yahoo.com (518) 810-8483

You MUST wear a mask or no service. We will have our own area, that will keep us at a social distance. I recommend bringing your own chair so we can keep a safe distance from each other as well!

All are welcome. You can purchase items from the menu.

If you need further directions, feel free to contact Marie Thorne at softballmom300@yahoo.com or (518) 810-8483

There may be a little wait for food, because there will be so many of us!

Due to social distancing, I am sad to say we will not be able  to pick anyone up to come this year.

Meeting notes:

Speaker: Ella DiPietro, owner of Saratoga CBD Co.

out of buisness?

ADPA Statement about medical marijuana CBD and PD

https://www.apdaparkinson.org/article/medical-marijuana-and-parkinsons-disease/

MJ FOX

https://www.michaeljfox.org/news/ask-md-medical-marijuana-and-parkinsons-disease

Davis Phinney

https://www.davisphinneyfoundation.org/blog/new-research-medication-and-cbd-oil-in-parkinsons-with-dr-trevor-hawkins/

• Using CBD oil to treat symptoms of Parkinson’s is becoming more and more common; however, the lack of oversight and inconsistency from batch to batch are big problems

• There’s a trial going on at the University of Colorado right now for a CBD pill to treat Parkinson’s tremor

• The biggest hurdle for CBD studies is that there’s no monetary support – unlike the money that big pharma companies get

• If you want to experiment with CBD oil, make sure that you tell all of your providers about it because there can be serious drug interactions and be aware that each batch you get can be very different

NIH.GOV (National Institute of Health)

https://search.nih.gov/search?utf8=%E2%9C%93&affiliate=nih&query=cbd&commit=Search

FDA

https://www.fda.gov/consumers/consumer-updates/what-you-need-know-and-what-were-working-find-out-about-products-containing-cannabis-or-cannabis

medlineplus

https://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&v%3Asources=medlineplus-bundle&query=cannabidiol+%28cbd%29

Project CBD (mentioned b Ella and links to her company)

https://www.projectcbd.org/guidance/get-started

"Project CBD was established in 2009 by journalists who had been covering the medical marijuana story—the science, the movement and the industry. "

ZOOM discussion: Creativity has been shown to be helpful for people with Parkinson’s.  Let’s share and learn about how our creative pursuits impact us.

We recommend, but don’t require, reading the articles linked below.

• Psychology Today - PD drugs and creativity

• ADPA - Art therapy and PD

After registering, you will receive a confirmation email containing information about joining the meeting.

ZOOM meeting. Speaker: Lynda Shrager - Author, occupational therapist, social worker and a Certified Aging in Place Specialist – Topic: Simple modifications that can help seniors make their homes safer and easier to navigate etc.. You must register to attend this meeting. Join our mailing list for meeting invitations.

Find her book here - https://www.goodreads.com/book/show/36205917-age-in-place

Location: from your smart phone, tablet, computer. or audio-only telephone dial-in. Bring your own refreshments.

The topics for discussion will be up to you. 

Do you know a person who will help make my home accessable?

Do you know a person who will help make a financial or estate plan?

Coping with social distancing? 

Access to medications, health care? 

Can someone offer to help me with ____? 

Can I offer to help someone else with ____? 

What to do while keeping social distance? 

Can you share a song, a joke, a poem, a story, a picture, a recipe, a meditation? 

We all gain by continuing social interaction, and we can still see and talk to each other by joining a scheduled internet video ZOOM meeting.