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 [HERE]

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.

Meeting: November 14, 2024 Support Group Meeting - 7:00 - 8:30 p.m.

PRESENTERS: 

• 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.

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.

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Occupational and Physical Therapy Delmar

Albany Medical Center

99 Delaware Ave.
Delmar, NY 12054

Call for Appointment
518-262-9700

Meeting: October10, 2024 - 7:00 - 8:30 p.m.

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

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.

==========

Dr. 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. 

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.

PRESENTER:Representative from the Parkinson's Foundation

TOPIC: How to Stay Safe During a Hospital Stay

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 

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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: