Posts


Fox Insight

The future of Parkinson’s research is in powerful hands. Yours.

Fox Insight is an online clinical study where people with Parkinson’s disease and their loved ones share information that could transform the search for better treatments. You can help shape the future of Parkinson’s research — but it’s going to take all of us, working together. You in?

https://foxinsight.michaeljfox.org/

 


Be prepared for a hospital visit

No one wants to go to the hospital, but sometimes it is necessary.

Here are some ways to be prepared

Aware in care kit
To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, we developed the free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital visit.

Aware in Care kits can be requested from your local Parkinson’s Foundation Chapter or Center of Excellence. If you do not live in an area with a Chapter or center, you can order a kit online.

http://parkinson.org/Living-with-Parkinsons/Resources-and-Support/Patient-Safety-Kit

Vial of life

Everybody should have a Vial of Life form filled out. The Vial of Life is a smart way to have your medical information on hand just in case of an emergency. Seniors need this because of their constant medical changes and medications… It’s the right thing to do.

Put one in your wallet, in your glove compartment, and especially on your refrigerator door

Print a kit http://www.vialoflife.com/print-free-vial-kits/

Print a decal to put on your door and refrigerator http://www.vialoflife.com/print-free-vial-kits/


Dance Through Parkinson’s Testimonials

​​The​re are ​many reasons that I enjoy participating in the Dancing ​Through Parkinson’s program. ​Here is my list:

​The brain can be changed by doing new activities. Dancing requires concentration and coordination, which help​s my brain​ stay sharp​. My neurologist is very pleased with my stable condition and says to keep up the exercise, including D​TP. T​his is just as important as ​​my medications, in ​her opinion.

I enjoy meeting the other ​people with Parkinson’s. D​TP provides a support group atmosphere, even though that was not the original intention of the program.

Rachelle ​brings a sense of joy to the class by playing interesting music and making the class fun and exciting . Th​e class always ​leaves me feeling uplifted.

Jud Eson – Dance Participant


Dance for Parkinson’s was something I didn’t have much interest in, especially since I couldn’t dance before I was diagnosed with Parkinson’s Disease (PD) 11 years ago.  Through the cajoling of friends, I hesitantly went perhaps a month after the classes had started.  I was amazed by the positive energy that the instructor exuded and the physical/emotional benefit was measurable.  The class benefits  those who have extreme limitations and to those who have been recently diagnosed.  Since Rachelle’s most recent training in NYC with the Mark Morris Dance Group, the class has seen a higher focus on fine motor skills, gait training, coordination, and balance exercises, which translates into real life benefits of dressing one’s self without help, walking, typing, thinking, and the general well being of individuals who have been inflicted by PD. Beyond the physical benefits, I spoken to a number of people in the class whereby Dance for PD is their only social outlet for the week.
While the class is being partially subsidized by the local PD support group, the weekly cost of $5 may seem at first glance as “affordable”, one must remember that generally speaking, PD patients are older and typically on a fixed income.  In my case, the impact of PD has forced me to stop working, and I too am now on a fixed income. It would be my hope that the making the Dance for PD class free would allow class size to grow with many of these PD dancers being able to experience the benefits of the Ciccotti Center.   Making the PD Dance class free would make it available to more PD patients.
While medical breakthroughs have been limited, exercise in any format has shown to slow down the progression of PD by as much as 30%.

Patrick Klee – Dance Participant


I would like to thank the Ciccotti Center for hosting this class! It is one of the activities I truly look forward to attending on a regular basis.
I was diagnosed with Parkinson’s Disease (PD) almost 20 years ago. For me, the best thing is exercise… all different forms of exercise and movement. The variety for me is important.
Besides taking the Dance/Movement class I also take a (non-contact) boxing class and a spin class (stationary bike). The dance class to me is like a PD Support Group. We get together, chat, take the class, and then chat more. This is one of the few places I feel comfortable to make mistakes and not over think about my symptoms. We are a group of like individuals taking the class with
limited opportunities to have the camaraderie of others in public. This class gives that to us. The smiles, laughter, and joy that emit from the room can be amazing. I appreciate this opportunity to let you know how grateful I am of the Cicotti Center’s support.

Bruce Plotsky – Dance Participant


Channeling Dance to Keep Moving with Parkinson’s

“Seven years ago, I was diagnosed with Parkinson’s disease, for which there is still no cure. I had but two options, I could live in fear, or I could scare myself healthy. I scared myself healthy, and so can you.”

Exercise is an important part of healthy living for everyone. For people with Parkinson’s disease (PD), 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. These benefits are supported by research.

Read more


According to a study published in Frontiers in Human Neuroscience Journal, dancing, especially when followed by a change in choreography, is superior to repetitive physical activities such as walking or cycling.

People who are physically active can slow down their brain’s aging process. Neuroscientists behind this study say that dancing is the most effective physical activity.

In their study, they prove that 2 different types of physical activity, dancing and endurance training  both increase the brain’s area that declines over time as we age. But, only dancing has proved to be effective when it comes to changes in behavior due to the noticeable improvements in balance.
The researchers selected 52 elderly volunteers aged 63-80 years for the purpose of the study. Then, they divided them randomly into two groups, one group was assigned to join dance classes, and the other group joined the sports control group.
The dance group took dance lessons with a constant change of choreography which moves they were asked to memorize. The program for the sports group, on the other hand, consisted of strength training, endurance training, and flexibility training.
The hippocampus area of the brain which is the most susceptible to decline because of the aging processes has increased in both groups. This area of the brain is also responsible for memory, balance, as well as learning.
But, only volunteers in the dance group had an increased volume of other subparts in the left hippocampus. Moreover, only dancing had increased the volume of one part in the right hippocampus called the subiculum.
This study proved that dancing, especially when followed by a change in choreography, is indeed superior to repetitive physical activities such as walking or cycling.


More than 35 peer reviewed scientific research studies conducted at a number of major university research centers around the world including Roehampton University, University of Florida, Queensland University of Technology, York University and the University of Freiburg point to the benefits of dance for people with Parkinson’s. A number of leading neurologists and movement disorder specialists around the world include Dance for PD classes among a shortlist of recommended activities for their patients.


Do you have a testimonial to add?


Suggestions for Handwriting Changes

Many people with Parkinson’s disease notice changes in their handwriting. Handwriting often becomes small and cramped, and can become more difficult to control when writing for longer periods of time. This handwriting change is called micrographia.

Why does micrographia occur?
Parkinson’s can cause slowing of movement and feelings of muscle stiffness in the hands and fingers. Loss of automatic motion also affects the easy, flowing motion of handwriting. This can impact even simple writing tasks such as signing your name or writing a shopping list. Attempts to write quickly without thinking about forming each
letter contributes to small, cramped handwriting, and may cause the hand to develop a feeling of tightness.

How can I make writing easier?

read more https://parkinson.org/sites/default/files/Suggestions%20for%20Handwriting%20Changes.pdf


November 3, 2018 – Don’t Fall Stand Tall: Balance/Fall Risk Assessment

09:00 AM – 12:00 PM — …

Date: November 3, 2018
Time: 9:00 a.m. – 12:00 p.m.
Location: Regional Therapy Center, 225 Washington Street, Saratoga Springs
Fee: Free. Space is limited.

Join us for a FREE balance/fall risk assessment using standardized testing and the most current research. You will be screened by skilled, licensed physical and occupational therapists from the Regional Therapy Center, who will also offer tips to help prevent falls.

Each screening will take approximately 30 minutes. Please wear comfortable clothing and sneakers.

Registration is required. Please call Saratoga Hospital Healthsource at 518-580-2450 or


February 14, 2019  meeting notice

Join the CDPSG Support Group for the monthly meeting.

February 14, 2019 7:00 PM at Beverwyck

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York. (Directions)

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

Topic :

Tom Ford – Massage tharapy


Speech and Swallowing Resources

http://parkinsons.stanford.edu/speech_swallowing.html for more current list

Relevant Publications – Downloadable

“Eating, Swallowing and Saliva Control in Parkinson’s”
Published by Parkinson’s UK, 2013
This six-page information sheet explains difficulties associated with eating and swallowing, as well as producing too much or too little saliva. Information and tips for family and friends are shared.

 

“Parkinson’s Disease: Speech and Swallowing,” by Marjorie L. Johnson MA/CCC-SLP
Published by National Parkinson Foundation (Now the Parkinson’s Foundation)
This 21-page booklet describes speech, swallowing, memory and thinking changes in PD. An evaluation check list helps determine if professional assistance is needed for speech and swallowing. Speech, swallowing, and cognitive self-help suggestions for patient, family and friends are included.
En Espanol: Enfermedad de Parkinson: Dificultades con el Habla y la Deglucion (tragar)

 

“Speaking Effectively, A Strategic Guide For Speaking and Swallowing”
Published by American Parkinson Disease Association, 2010
Booklet includes self-evaluations and caregiver surveys to determine at what point professional help is needed. Professional examinations are described along with recommendations for both home and professional intervention to improve speech, make eating easier and safer, and reduce drooling. Maintaining communication to reduce isolation is encouraged.


“Speech and Language Therapy and Parkinson’s”

Published by Parkinson’s UK, 2013
Short information sheet looks at what difficulties associated with speech and communication, and how speech and language therapy can help.

 

“Swallowing and Parkinson’s Disease”
Published by Parkinson’s Australia, 2008
Short summary of implications of swallowing problems, using both medical and lay terminology, with management strategies for some.

 

“What is Dysphagia?”
Published by American Parkinson Disease Association, 2011
This educational supplement describes the normal swallowing process. It offers seven swallowing exercises and a list of five other considerations that help with swallowing.

 


Relevant Online Information

“10 Tips for Managing Drooling in Parkinson’s,” by Dr. Maria De Leon
Published by defeatparkinsons.com, July 31, 2014
Sailorrhea, or drooling, refers to pooling of saliva in the mouth.  It occurs in around 50-80% of all Parkinson’s patients, particularly men.  This blog post explains the cause, risk of aspiration, anxiety, and social embarrassment, with 10 helpful tips & treatment options to help with this pesky problem.

 

“Speech and Swallowing Problems”
Published by National Parkinson Foundation (Now the Parkinson’s Foundation)
Webpage with self-assessments to determine if professional evaluation is needed for speech or voice and swallowing problems. Additioinal links to information on treatment for speech problems and a stronger voice.

 

“Saliva Control”
Published by the MSA Trust, April 2016
This 4-page fact sheet is aimed at those experiencing difficulties with saliva control.  It provides information about the possible problems and advises on what can be done to manage these symptoms.  MSA is a form of parkinsonism, sometimes referred to as ‘Parkinson’s Plus.’  It shares many gait, balance, and non-motor symptoms, like sailorrhea (drooling).

 

“Swallowing”
Published by What-When-How, In Depth Tutorials and Information
This short webpage explains the typical sequence of movements that transport food and liquids from the mouth to the stomach.  PD often affects the function of these muscles,  causing swallowing problems or drooling.  Significant swallowing problems can be life threatening.  Speech-language pathology can help a person improve control of these muscles.

 


Relevant Online Lectures and Webinars

“How Does Speech Therapy Help in Parkinson’s Patients”
By National Parkinson Foundation (Now the Parkinson’s Foundation), August 2009
Four-minute video features Michael S. Okun, MD.

 


“My Parkinson’s Story: Speech and Swallowing”
By the Veteran’s Administration
This 8-minute video alternates between an interview with a man and his wife and healthcare professionals. The man and his wife share how Parkinson’s has affected his speech and swallowing. The healthcare professionals explain how Parkinson’s affects speech and swallowing. Speech therapy can improve speech volume and enunciation as well as swallowing control and drooling. They also advise specific changes to eating habits and avoiding some types of foods to prevent choking.

 

“What Types of Tests and Techniques are there for Swallowing Problems?”
By the National Parkinson Foundation (Now the Parkinson’s Foundation)
Four-minute video features Michael S. Okun, MD.

 


Links last updated by Denise Dagan January 2018. This list compiled by Denise Dagan with Stanford’s Parkinson’s Community Outreach Program, May 2012.

 

 


Molecule capable of halting and reverting neurodegeneration caused by Parkinson’s disease identified

The small SynuClean-D molecule interrupts the formation of the alpha-synuclein amyloid fibres responsible for the onset of Parkinson’s disease, and reverts the neurodegeneration caused by the disease. The study, headed by Universitat Autònoma de Barcelona researchers, was published in PNAS.

Read more

https://medicalxpress.com/news/2018-09-molecule-capable-halting-reverting-neurodegeneration.html


A New Parkinson’s Vocabulary – Humor

From: https://nwpf.org/stay-informed/blog/needed-new-parkinsons-vocabulary/

Needed: New Parkinson’s Vocabulary

Friday February 26, 2016

One of the less noticed challenges of Parkinson’s Disease is mastering the arcane vocabulary that describes the particulars of the disorder. If we want to speak clearly with our doctors and others about what ails us, we have to use strange words like “dyskinesia,” “festination,” “dystonia,” and “bradyphrenia.” Words that are fun to say on their own, but even more fun to rattle off as part of a sentence. “In spite of severe dystonia, she managed to festinate across the room.”

I like showing off my vocabulary as, much as the next person, (ok- I like it even more than the next person) but why do the doctors get to have all the fun making up the words? Plus, there are many word-worthy phenomena related to PD that they have overlooked! Who controls language controls how we think about about whatever it is we are talking about. Time for a little patient empowerment.

With that in mind, I offer some new PD words for us to consider adding to the current store.

“Pinballing” this one was coined by my wife to describe the tendency I and other people with PD have to walk erratically, knocking into shelves, signposts, and one another as we lurch through life.

“Bladderdash” adapted from the free-wheeling speech of Alaska Rep. Don Young,  describes the desperate process of finding a bathroom, frantically fumbling to unbutton and unzip your pants, and whipping down your underwear in time (you hope) to empty your urgent bladder.

“Murmur” of PD patients. A collective noun for a bunch of people with PD.

“Parkanoia” the feeling that people are covertly observing your PD symptoms. And judging you for them.

“No Parking Area” A place or circumstance where you feel uncomfortable exhibiting Parkinson’s symptoms, like in a restaurant, on a plane, in a park, at school, in church, at the grocery store, in a barber shop, on the subway, at a movie, attending a concert, at work, in the gym, at the library, buying shoes, on a date, at the pool, in court, at the ball game, in a bar, at a museum, with your neurologist, etc… etc… etc…

“Depillitated” Caught without access to your pills when you need them.

“Repillitated” To have access to your pills restored.

“Ghost Dose” Skipping a pill by accident, then grinding to a halt.

“Parkinstoned” To appear to be drunk or high due to PD symptoms such as lurching, falling, and slurred speech.

“Dopameanie” A perfectly nice person with Parkinson’s Disease who is mistaken for an anti-social jerk because they don’t smile due to facial muscle freezing.

“Parkinspotting” The habit of mentally diagnosing random strangers who lack arm-swing, have soft, hoarse voices, and/or walk slowly, but are clueless about the tell-tale symptoms of PD they are exhibiting.

Think how much easier these new words will make life. When someone asks what you did today you can say “I went to the mall to do a little Parkinspotting, and suddenly realized I had ghost-dosed my last pill. Wouldn’t you know, I was depillitated, I’d left them on the nightstand at home. Naturally parkanoia kicked in, and on top of that, I had to bladderdash to the restroom. Of course, by then I was totally parkinstoned and pin-balling all over the place. Security eventually threw me out, but I’ve been repillitated, and I’m fine now., except for a few bruises.”

See how easy and fun that is? If you have any custom-made PD words you think others would find helpful, don’t be stingy, please share them via the comments field below!

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger


11 Books That Shine a Light on Parkinson’s Disease

Parkinson’s disease directly affects as many as one million Americans, according to the Parkinson’s Disease Foundation. When you consider their families, friends, and colleagues, the number of people truly touched by this disease is remarkable.

Whether you’re facing a Parkinson’s diagnosis or supporting someone living with the disease, education and community are key. Understanding the disease and what people living with Parkinson’s go through is a crucial first step in lending useful support. The following list of books is a perfect resource for those directly affected by the disease or even just those curious about it.

https://www.healthline.com/health/parkinsons-disease/best-books#1


December 8, 2018 – Holiday get together

Please join the Capital District Parkinson’s Support Group for our
Annual  Holiday Get Together
When: Saturday December 8, 2018 1 – 4 PM
Where:  Beverwyck Senior Center (directions)

We will have holiday appetizers and desserts as well as fun activities, gift exchange and music.

Details to follow


Long sleeve t-shirt for sale

Here is the T-shirt as discussed! Let me know if you have interest and size(s). $20 per shirt with 100% of the proceeds going to the support group!!!

patrick klee pklee2210@yahoo.com

So in addition to the long sleeve, navy shirt, I will do a very limited run in a maroon short sleeve.  This unit will be Gildan 100% cotton or a 50-50 blend depending on availability (same brand as the dance t shirt and boxing shirts).  This unit will be sold I think for $10 (don’t hold me to this). Please forward to those who you think would be interested.  I will be ordering by Tuesday, 9/18/18. Again there will be minimal availability of this one so I think at the very minimum I will order 15 units, and any specific shirts ordered above the minimum quantity amount!

 


FREE Parkinson’s print materials available

There are a ton of great, FREE Parkinson’s print materials available – you just have to know where to look!  This is by no means a complete list however these items are particularly useful.

Davis Phinney Foundation Every Victory Counts book 

Parkinson’s Foundation “Aware in Care” kit, Caring and Coping guide, other handbooks

  • Visit www.parkinson.org
  • Click the “Ways to Give” tab at the top of the page
  • Click “Shop” (everything is free)
  • Select the item(s) you want to receive
    • For booklets, you have the option of downloading as a PDF
  • Click Add to Cart
  • When you’re done shopping, click “Checkout”
  • Fill in the required information.  If you do not want to receive emails from the PF, make sure to uncheck that box.
  • Need assistance or don’t have internet access?  Call 800-473-4636 to order.

APDA Materials

  • Visit https://www.apdaparkinson.org/resources-support/download-publications/
  • To download DIGITAL versions, select the booklet(s) or supplement(s) that you want to download.
  • To order PRINT copies, click the link near the top of the page that says, “You can also order print publications directly from us using this form.”
    • Fill in the required information.
    • Once you do that, available publications will be displayed.

 online education, I would suggest the sources below.  Please note that the webinars are archived on these sites so you do not have to view the webinar during it’s “live” broadcast.


Spikes Trikes 10% off all purchases

Spikes Trikes is offering 10% off all purchases for anyone with Parkinson’s until September 30, 2018. Feel free to contact him on (518) 842-4827. His website is www.spikestrikes.biz. My husband (Bill) and I (Marie Thorne softballmom300@yahoo.com (518) 810-8483) both have trikes and are more than happy to meet up with anyone who would like to try one. Bernie (owner of Spikes Trikes) is also happy to have you try the ones in his shop to see what would best work for you. I am excited to tell you that they are fun to ride and a great way to exercise. You can get auto assist on the trikes which you can ride without the assist, with just some assist and with full assist.
Spike’s Trikes | Where The Fun Begins

www.spikestrikes.biz
Welcome to Spikes Trikes, a Premiere Terra Trike Dealer, where customer service and satisfaction is our top priority.We have been selling and servicing recumbent trikes in the capitol region of New York since 2013. Stop in and see us today.


Hope Soars Gala 2018 – cancelled

The Hope Soars Gala will not be held this year.
Hope Soars underwrites many of the PD programs in the Capital District so that they are able to be offered at no or low cost.  Hope Soars also contributes to Parkinson’s Disease Research at Albany Medical Center’s Movement Disorders Center.
The gala funds a large part of this. Since it is not being held this year  this will probably stretch the organization’s resources a bit thinner than other years. While they would always welcome donations at any time, please keep Hope Soars  in mind especially this year if you should find a little extra in your wallet or pocketbook. The organization isn’t asking for this, but we know that it would be welcome, and it supports all of us, so please keep it in mind.
And, if you haven’t checked out any of the great PD programs they support, Please Do!  You can find all of them on www.hopesoars.org.  Try out PD yoga, boxing, dance, peddling4parkinsons, special events like the walk….it’s all there.
Thanks!
Cindy Petker

Wisdom and advice for the newly diagnosed

Other pieces  of advice and wisdom:

  • Take your meds on time.
  • Cry when you need to.
  • Everyone’s journey is different.
  • Exercise.
  • It’s OK to ask for help!
  • Give yourself time to get your head around the diagnosis. Allow yourself time to grieve.
  • Don’t overthink having PD. Don’t dwell on it.
  • Keep a sense of humor. If you’ve never had one, it’s time to get one.
  • Try to stay away from stress. Stress makes PD symptoms worse. Eliminate what you can out of your life.
  • The more you stress, the worse the symptoms are.
  • Discipline yourself. Get what information you can on PD and then make a plan. Establish a routine on taking your meds on time. Keep a log/journal to take to your appointments.
  • Pray.
  • Exercise.
  • Stay away from Dr. Google.
  • Exercise your brain as well as your body. Word games. Number games. Play games with your grandchildren or your kids or friends.
  • Don’t let this be a death sentence.
  • Never, never, never, never, never give up.

And exercise.


Newly diagnosed advice from M.J. Fox Foundation

uest blogger Bev Ribaudo was diagnosed with Young Onset Parkinson’s at age 47, but her symptoms began in her late 30′s. Having always been an optimist, Bev decided to fight this disease using humor, sharing her observations at Parkinson’s Humor.

First, don’t panic. Go ahead and get mad, throw a fit, cry for a while, then get over it and get on with your life. It’s just Parkinson’s disease, it won’t kill you. It could be a lot worse, you could have cancer.

Read more

https://www.michaeljfox.org/foundation/news-detail.php?you-have-just-been-diagnosed-with-parkinson-now-what


Newly diagnosed advice from Davis Phinney Foundation

Hearing the words, “You have Parkinson’s disease,” is life changing. For some, a Parkinson’s diagnosis may mark the end of a long and frustrating search to explain a collection of different and seemingly disconnected symptoms. For others, a Parkinson’s diagnosis is a complete shock, filled with feelings of disbelief and despair. For everyone, a Parkinson’s diagnosis brings a new and unexpected journey.

Parkinson’s is not life-threatening, but it is progressive. This means that symptoms and effects of Parkinson’s will change and get worse over time. Parkinson’s is also very complex and can affect almost every part of the body, ranging from how you move to how you feel to how you think and process. When you are first diagnosed, the sheer amount of information and the uniqueness of each person’s experience of Parkinson’s can be incredibly overwhelming.

In this section, we help you navigate to the right information so you can get started on your path to living well with Parkinson’s.

Newly Diagnosed

 


Newly diagnosed advice from Parkinson.org

If you have been recently diagnosed with Parkinson’s disease, you are not alone. Today many people with Parkinson’s are looking beyond their doctors alone to keep themselves well. We are here to help empower you by giving you the tools and information you need to lead a healthier, more independent life. Starting today you have the power to make a positive change in your life.

This section of Parkinson.org is unique; all of topics listed below have been written by people who have lived well with Parkinson’s for several years

http://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Advice-for-the-Newly-Diagnosed

 


Speach and swallowing in PD

This booklet explains changes in speech, voice and swallowing that can affect people with Parkinson’s disease. Exercises for speech and voice along with advice for improved swallowing are included, along with advice on speech-language therapy and medications.

http://parkinson.org/pd-library/books/speech-swallowing

 

Changes in speaking, chewing and swallowing are common in Parkinson’s disease (PD) and can interfere with important parts of life, such as the ability to eat well. But they don’t always have obvious signs, and many people with PD are not aware of these difficulties, or don’t know how to describe them.


The Albany Guardian Society 2018 Fall 2018 Institute semester

The Albany Guardian Society 2018 Fall Institute semester offers programs in the following broad categories:

Read more at http://www.albanyguardiansociety.org/fall18catalog.php

  • Caregiving
  • Community Engagement
  • Health + Wellness
  • Housing
  • Legal
  • Professional Development
  • Technology

These categories offer a variety of selections on topics of importance to a wide audience. Please scroll down to see all of the Institute’s offerings for the Fall 2018 semester.

There is no cost to attend our programs; however, registration is required for each course you wish to attend. To register, simply press the “Register Button” next to the class description and complete the registration form. If you are unable to complete an online registration, please contact Albany Guardian Society and we will provide assistance.

If you have any questions regarding the Institute or are unable to attend a class once you have registered, please call Albany Guardian Society at 518-434-2140 or email us at ags@albanyguardiansociety.org.

 


October 11, 2018 Onondaga County Office for Aging – Living an Active Life with Parkinson’s Disease Conference

Conference Date – Thursday, October 11, 2018

Please join us for the Sixth Annual Onondaga County “Living an Active Life with Parkinson’s Disease” Conference. This free day of learning is offered by the Onondaga County Office for Aging and Upstate University Hospital’s HealthLink and it will be held at the Holiday Inn, 441 Electronics Parkway, Liverpool, NY 13088.

Check-in is from 8:15 am to 8:45 am and the program runs from 9:00 am to 2:15 pm and includes lunch.

The conference host, Susan Kennedy, will introduce the following speakers:

Sarah King, PT, DPT

– Redefining Your Diagnosis
– How to Build Your Parkinson’s Plan of Attack
– Exercise is Medicine – Movement Workshop
Michelle Burack, MD
Gut-Brain Connections in Parkinson’s
Fahed Saada, MD, Neurologist
Psychological Issues with Parkinson’s Disease

There is no cost for the conference and lunch but registration is required as space is limited. To register, please call Upstate Connect at 315-464-8668.

The deadline for registration is Friday, October 5, 2018.

Please feel free to print, post and distribute the attached flyer.

Thank you.

Ellen M. McCauley
Public Information Specialist

Onondaga County
Department of Adult & Long Term Care Services

(Aging, Mental Health, NY Connects, Protective Services, Veterans)
421 Montgomery Street, 10th Floor

Syracuse, NY 13202

Phone: (315) 435-2362 Ext. 4942; Fax: (315) 435-3129

Email: EllenMcCauley@ongov.net

Website: www.ongov.net; Department www.ongov.net/adult


Directions to Van Cortland Room at Beverwyck

40 Autumn Drive, Slingerlands, NY  12159

WE WILL MEET IN A DIFFERENT BUILDING AND DIFFERENT ROOM, THIS MEETING ONLY.

We will meet at the Van Cortland Room at Beverwyck Slingerlands.

GPS – 40 Autumn Drive, Slingerlands, NY 12159

Short version – go past the driveway you usually turn in to our normal meeting room.

Turn left at the first intersection at Autumn Drive

Park at the “Main Entrance” on the left.

Enter through the Main Entrance. Look for the Van Cortland Room, close to the entrance

Map

 

From the West: 

(Schenectady, Scotia, Glenville, Buffalo) Route 5 East, right on Route 155, left on Western Avenue (Route 20), right on Schoolhouse Road, left on Krumkill Road (1/2 mile), right onto Beverwyck Lane. Turn right at the second drivway on the right. Park and come in and join us.
Or, Route 7 East, to Route 87 South to end, left on Western Avenue (Route 20), right on Schoolhouse Road, left on Krumkill Road (1/2 mile), right onto Beverwyck Lane. Turn LEFT on Autumn Drive and look for the parking lot at the Main Entrance.

If the main entrance parking is full, drop off passengers and park in the nearby North or South lots.

 


From the East:

(Troy, Rensselaer, East Greenbush, Boston) Interstate 90 West to Slingerlands Exit 4 (Route 85W), to Krumkill Road Exit. At end of exit ramp, take a right on Krumkill Road (1 mile), left onto Beverwyck Lane.Turn right at the second driveway on the right. Park and come in.

Or, Route 9 South to Interstate 90 West, to Slingerlands Exit 4 (Route 85W), to Krumkill Road Exit, right on Krumkill Road (1 mile), left onto Beverwyck Lane.

Turn LEFT on Autumn Drive and look for the parking lot at the Main Entrance.

If the main entrance parking is full, drop off passengers and park in the nearby North or South lots.

 

 


From the South:

(Ravena, Coeymans, Catskill, NYC) NYS Thruway North to Exit 24, to Route 87 South (exit 1-S Western Avenue), left on Western Avenue (Route 20), right on Schoolhouse Road, left on Krumkill Road (1/2 mile), right onto Beverwyck Lane.

Turn LEFT on Autumn Drive and look for the parking lot at the Main Entrance.

If the main entrance parking is full, drop off passengers and park in the nearby North or South lots.

 

From the North:

(Clifton Park, Saratoga Springs, Adirondacks) I-87 (Northway) South to Route 87 South (exit 1-S Western Avenue), left on Western Avenue (Route 20), right on Schoolhouse Road, at the traffic circle take the second exit onto Krumkill Rd., then a right onto Beverwyck Lane.

Turn LEFT on Autumn Drive and look for the parking lot at the Main Entrance.

If the main entrance parking is full, drop off passengers and park in the nearby North or South lots.

 



New hope for Parkinson’s Cure

Japanese research team announced it will start human clinical trials for a new Parkinson’s disease treatment.
On Monday, a team from Kyoto University’s Center for iPS Cell Research and Application announced it will begin testing the new treatment on humans after successful rounds of animal trials. The injected treatment uses stem cells to help those with Parkinson’s diseases and received approval from the government.

Read more 


Onondaga County Jamesville Support Group

Onondaga County Jamesville Support Group

Monthly, 3 rd Thursday 2:00 PM – 3:30
The Nottingham
1301 Nottingham Road
Jamesville, NY 13078
Contact: Cynthia Stevenson (315) 435-2362 ext 4993
cstevenson@ongov.net


Game-changer for Parkinson’s disease outcomes

A unique gaming system called ‘OrbIT’ will play a lead role in the fight to improve life for individuals living with Parkinson’s disease, thanks to funding from the Estate of the late Olga Mabel Woolger.

In a three-year $90,000 study, Flinders University Rehabilitation Engineer, Mr David Hobbs and University of Adelaide neuroscientist Dr. Lyndsey Collins-Praino will partner with Parkinson’s South Australia to trial OrbIT as a cognitive training device to improve outcomes and delay dementia onset for people with Parkinson’s .

The OrbIT gaming system is an accessible, fun, stand-alone computer gaming system that features a novel and easy to use controller.

read more https://medicalxpress.com/news/2018-07-game-changer-parkinson-disease-outcomes.html


Robert Foster – 1945 – 2018

Robert G. Foster 73 of East Greenbush died Tuesday, July 10, 2018 at St Peter’s Hospice. Robert was born in Schaghticoke to the late Lillian (Seymour) and Durwood Foster. He was a Navy and Vietnam Veteran. He worked as a mechanical technician and later as a regional technical manager for various companies thoughout his career. Bob’s hobbies were hiking, biking, and camping. He loved being with family and friends and found joy in simple moments, while enjoying their company. He loved life and did not let his Parkinson’s of 14 years determine how he lived. He saw great possibilities everywhere.

Bob will be forever remembered by his beloved wife of 44 years Sandy, two children, Stephanie Foster-Breunig of Castleton and Joshua Foster of Albany, son-in-law Mike Breunig, granddaughters Isabella and Sophia Breunig. Brothers Eugene Foster of Johnsonville, and Donald Foster of Schaghticoke. Sisters Donna Brock of Babcock Lake and Linda Vogt of Schaghticoke.

Our Bob will be missed tremendously.

Relatives and friends may call Saturday July 21, 2018 from 9:00 am – 10:30 followed by a Memorial Service at 10:30 am from the Wm. J. Rockefeller Funeral Home, Inc., 165 Columbia Turnpike. Memorial donations in memory of Bob may be made to the Parkinson’s foundation, Hope Soars, 1410 Maple Hill Rd. Castleton, NY 12033.

https://wjrockefeller.com/tribute/details/1039/Robert-Foster/obituary.html#tribute-start


Free to a good home

Free to a good home:

A special Bruno Valet Plus car seat that came from a 2014 Chrysler Town and Country van

https://www.bruno.com/products-buckets/2473/valet-plus-(1)

 

and

Pride scooter/wheelchair lift that was also on the van. It goes into a tow bar on the vehicle.

https://www.pridemobility.com/c/pride-lifts-and-ramps

 

The owner would love someone who needs them to have them since they are dreadfully expensive when new.

Contact owner by calling Johnine (Jonnie) Simpson 518-527-9155.


November 8, 2018 meeting notice

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York. (Directions)

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

Topic :

LSVT BIG and Physical Therapy​​

Speaker:

Sarah Gutenmann, PT, DPT, LSVT BIG
Dr. Gutenmann graduated from Clarkson University with a doctoral degree in physical therapy. Dr. Gutenmann also holds an associates degree in nursing from SUNY Canton, and a BS from SUNY Potsdam.

Dr. Gutenmann holds a specialization certification in LSVT BIG, which is a specialized training program designed to train rehabilitation therapists in an evidence-based treatment approach for individuals with Parkinson disease and other neurological disorders. Sarah is also very interested in women’s health and pelvic physical therapy.


October 11, 2018 meeting notice

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York. (Directions)

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information

Topic : 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.


September 13, 2018 meeting notice

Join us for our monthly meeting.
Date: September 13, 2018 – Thursday 7:00 at Beverwyk.
Topic: Deep Brain Stimulation (DBS) – Christopher Henessay representing Abbott Infinity DBS

THIS MONTH ONLY – WE WILL MEET in a different building at Beverwyck. We will meet in the Van Cortland Room, 40 Autumn Drive, (Directions)

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.

Patients, spouses, siblings, medical professionals/students, friends, and caregivers are welcome to attend to learn more about Parkinson’s disease or obtain information


August 10, 2018 – Davis Phinney Victory Summit on-line event

THE VICTORY SUMMIT® EVENT LIVE BROADCAST

For the first time ever, the Davis Phinney Foundation will broadcast The Victory Summit®  event worldwide. The event, which will also be attended in person by several hundred people, will be filmed at the Pasadena Convention Center and streamed, free of charge, to anyone worldwide with access to a computer and internet. We’ve taken on this initiative as a way to allow more people living with Parkinson’s, care partners and care providers to take part in this valuable day of information on living well with Parkinson’s.

  • WHEN

    Friday August 10, 2018 1:00 pm to 7:30 pm


  • WHERE

    Worldwide (broadcast from Los Angeles, CA)

read more


How to travel (with greater ease) with Parkinson’s

For the average person, traveling is a minor frustration. Security lines, delays, crowded airports and cramped and long lines at snack shops and restaurants are par for the course. However, if you’re living with Parkinson’s, those things aren’t just frustrations, they can be so troublesome and aggravating to deal with that you choose to stay at home.

Read more from the Davis Phinney Foundation

How to Travel (with greater ease) with Parkinson’s


Experimental drug stops Parkinson’s disease progression and symptoms in mice

Drug similar to FDA-approved diabetes treatments shown to prevent motor impairment, extend the lives of mice with Parkinson’s

Johns Hopkins researchers say they have developed an experimental drug similar to compounds used to treat diabetes that slows the progression of Parkinson’s disease and its symptoms in mice.

In experiments performed with cultures of human brain cells and live mouse models, they report the drug, called NLY01, blocked the degradation of brain cells that is the hallmark of Parkinson’s disease. The drug is expected to move to clinical trials this year.

Read more


Support Group t-shirt for sale

 

$15 per shirt.  Available in sizes small, medium, large and x-large.

Color and design may differ slightly from picture shown.

This is a limited edition high quality cotton t-shirt.

100% of the profits from the sale will go to the support group.

You can get yours at the Picnic, but better to reserve your shirt as quantities are limited.

Contact PKK2222@yahoo if you want one. Patrick Klee with take, Venmo, Zelle or cash.


In Parkinson’s Disease, early diagnosis does matter

Carolyn Allen Zeiger, Ph.D.

Retired Licensed Psychologist

and spouse of someone with Parkinson’s Disease

 

In Parkinson’s Disease, early diagnosis does matter—for some obvious reasons, and also for reasons that are rarely discussed.  (recent edit 2/20/2018)

The question I always hear people with Parkinson’s (PWPs)—and their spouses—ask about someone else with PD is not, “How long have you had PD?” but “When were you diagnosed?”  Given that there is no definitive medical test to confirm the diagnosis, the delay between symptom onset and diagnosis is generally a few years. The thinking used to be that an early diagnosis didn’t matter.  After all, at this time it can’t be cured, it’s going to progress, and perhaps it is best to delay the use of dopamine replacement medications since they only provide symptom relief. In addition, even some physicians still harbor the mistaken belief that these medications tend to lose their effectiveness over time. Generally unstated, is also the thought that early in the progression of the disease it doesn’t have a big negative impact on the patient, or his life in general.  He’s doing well enough to get by. But is he or she? And what about the spouse or partner?

Fortunately, more doctors are focusing on early diagnosis.  But not for a reason that I find compelling: the impact of PD on our most intimate relationships—spouse, partner, lover. So many times I have heard, and experienced myself, the painful impact of undiagnosed PD on our closest relationships. Sometimes the impact is so great as to mean the ending of even long-term marriages when unidentified symptoms become burdensome or sources of ongoing conflict.  

The precise source of the problems varies depending on the varying symptom patterns.  Here are just a few stories:

Facial masking.  A wife wept as she told me, “He never smiled at me anymore. I kept asking, are you angry with me?  Don’t you love me anymore? “ He didn’t know what I was talking about. Finally he did get angry. “Just leave me alone! Nothing is wrong.”  She began to pull back; he responded in kind. A long time, close and open relationship became distant and closed off.

Fading Voice.  When the PWP can’t be heard, he feels ignored, or is convinced that his partner has a hearing problem because he is not aware that his voice has become soft.  His speech might be slurred and hard to understand as well. His partner becomes impatient, and perhaps a little embarrassed, so she begins to speak for him; the PWP pulls back, goes silent and a destructive pattern has been established

Apathy.  Partner: “Get off that couch and DO something!  All you do is sit around.”

PWP: “But I don’t feel like doing anything.”   

Partner: “If you would just get moving, you would.”

But no amount of either nagging or kind encouragement makes a difference because the apathy has a neurological basis. The spouse starts doing things by himself because “Nothing I do gets her moving, and I don’t want to stay home all the time.”  Both are lonely.

REM Sleep Behavior Disorder.   During the night, a man is awakened by his wife screaming and swearing at him.  He’s completely shocked and furious. “I didn’t do anything to deserve that!” When he wakes her up, she doesn’t have any idea what he is talking about.  Another PWP punched his sleeping wife—convinced he was actually “saving her from a gorilla”. Of course the gorilla was in a dream that he was unknowingly acting out.

Of course, symptoms interact and exacerbate each other.

Foot dragging combined with fragmentation of sleep at night and daytime fatigue  can lead to frequent tripping and falls, injuries that put a burden on them both, and lead to injuries and/or health problems for the partner as well as the PWP.

In all these scenarios, the accumulation of seemingly minor symptoms can lead to a major disruption in the relationship. The partner with PD feels constantly scrutinized, unfairly criticized, and nagged. The care partner feels ignored, disbelieved, and abandoned.  Over time, both partners may feel mistreated or simply neglected. The distance and constant tension of conflict, even low-level conflict, erodes the intimacy in the relationship.

One of the areas where couples experience the most pain is in the most intimate relationship: sex.  Many aspects of PD can interfere with a couple’s sex life. They include fatigue, apathy, loss of erectile function, reduced libido, and anxiety. All are neurologically based symptoms that can appear to be psychological (and might be that as well!), or stem from something going wrong in the relationship. Some of the physical symptoms such as awkward movements, loss of bladder control or drooling can be embarrassing or repellant to either one of them. The result is that either partner may pull away or give up.  Talking about it is important, but isn’t sufficient to solve the problems when the cause remains a mystery to them both.

In talking to both PWPs and their partners, I very rarely hear about a doctor inquiring about a couple’s sex life—before or after diagnosis. Sometimes younger clinicians assume that an older couple doesn’t have a sex life any longer. Or the couple might think they are just “too old” now, so they don’t even think to tell the doctor. For younger couples this can be even more disruptive to the relationship. As a psychologist, I know this is a difficult subject for any patient to broach, whatever their age or stage in life, and so it is seldom addressed.

What can be done?  

More doctors understand that PD is more than a movement disorder.  Some are taking a whole-person focus and inquiring about your whole life.  This may seem odd or inappropriate— sex is not what you came in to talk about—nonetheless, it is invaluable. You can help the clinicians out by telling them everything that is bothering you, whether you consider it physiological or psychological. Because my husband’s symptoms were more autonomic than motor, no doctor would consider evaluating him for PD, even when asked. Nevertheless, because a nurse asked us to tell her everything we were concerned about, the interview revealed the pattern of autonomic as well as movement related disorders that characterize PD.  

And after you receive a diagnosis, continue to report all your concerns—both partners’ concerns.  Because the PWP is often not aware of his symptoms, the perspective of those closest to him is essential for both diagnosis and selection of the best possible treatment of symptoms.  Also what bothers the partner may not bother the PWP and vice versa. Both of you count.

Read books that focus on all aspects of living with PD, such as Brain and Behavior by Joseph H. Friedman, MD, and 100 Questions and Answers about Parkinson Disease by Abraham Lieberman, MD. I highly recommend getting the Phinney  Foundation guide Every  Victory Counts. Read and contribute to blogs that focus on PD.

Talk about your relationships in support groups.  I have found other members are so relieved to have someone bring up difficult topics, to know they are not alone, and are grateful to other members who share ideas and approaches that are helpful.  Have your support group leaders bring in experts to talk about the impact of PD on relationships—including sex. When I have given such talks, some members begin to talk openly while others sit quietly listening.  Participants share their pain, fears, confusion, guilt, and then sigh with relief as they come to understand what is going wrong and ways to address it. Afterwards, both the quiet and the talkative participants tell me how much it has helped them.

Share this article with neurologists to help them understand more about how PD impacts relationships and the value of early diagnosis.  We health professionals truly want to be helpful, and to do so, we need to educate and consult with each other.

Medication may provide “only” symptom-relief, but relief can be essential to restoring and preserving your relationship.  Also, treatment is more than medication. It includes exercise. Exercise of various kinds has been shown to not only improve function, but to stimulate neural growth. In our work teaching yoga for Parkinson’s, our students reported that it improves mood and self confidence (And we could see it!). Just having fun is therapy!  Treatment can also include support groups and psychotherapy, enjoyable activities—anything that improves your quality of life.

A combination of treatments tailored to the individual PWP, taking into account the person’s life situation and key relationships, provides a better quality of life for everyone, both individually and as a couple. Improvement in one aspect of your life starts a positive feedback loop, and each person’s life becomes more satisfying

Carolyn Allen Zeiger, Ph.D. has over 45 years experience in the fields of clinical, organizational and health psychology. With Kate Kelsall’s husband, Tom, she founded a Parkinson’s care partners’ support group in Denver, and assisted her husband Paul in teaching yoga to others with Parkinson’s Disease and their partners. Carolyn is a retired State of Colorado Licensed Psychologist, and former adjunct faculty member at University of Denver, University of Colorado and University of Arizona. She also provided short term counseling for the caregivers of those with Parkinson’s Disease.

 


Impulse control disorders found to be more common in people taking Parkinson’s drugs

Over time, half of the people taking certain drugs for Parkinson’s disease may develop impulse control disorders such as compulsive gambling, shopping or eating, according to a study published in the June 20, 2018, online issue of Neurology®, the medical journal of the American Academy of Neurology.

In Parkinson’s, a vital chemical in the brain called dopamine that regulates movement is gradually reduced. Parkinson’s is treated with levodopa, which converts to dopamine in the brain, or with dopamine agonists, which work by activating dopamine receptors.

“Our study suggests that impulse control disorders are even more common than we thought in people who take dopamine agonists,” said study author Jean-Christophe Corvol, MD, of the ICM Brain and Spine Institute-;Pitié-Salpêtrière Hospital, Assistance Publique-;Hôpitaux de Paris, Sorbonne University in Paris, France. “These disorders can lead to serious financial, legal and social and psychological problems.”

Read more


June 14, 2018 – Senior Services of Albany Caregiver Teleseminar.

Senior Services of Albany is conducting an upcoming Caregiver Teleseminar. This is a one-time call on Thursday, June 14, 2018 from 7:00 p.m. – 8:00 p.m.

The topics for this teleseminar are:

  • Health Care Proxies;
  • Living Wills;
  • MOLST;
  • Powers of Attorney; and
  • The disposition of assets after death.

 

Advance registration is required. To register, please contact Beth Owen at Senior Services of Albany at (518) 694-3511.

 

This seminar is sponsored by Albany County Department for Aging, NYS Office for Aging, The Administration on Aging, The United Way of the Greater Capital Region

www.AlbanyGuardianSociety.org


Study Links Some Antidepressants, Bipolar Medications To Dementia

The research also found an associated risk with medications used for bladder conditions, as well as Parkinson’s disease.

“It’s important but it’s not conclusive,” commented Dr. Barbara Sommer, a geriatric psychiatrist at Stanford Medical Center and an expert in anticholinergic medication. She cautioned that the study does not prove these drugs cause dementia. Even so, she said if you take medication, over-the-counter drugs, even supplements, you should reassess if you really need them.

Read more

Study Links Some Antidepressants, Bipolar Medications To Dementia « CBS San Francisco

 


APDA Healthcare Communication Graph

 

By using the APDA Healthcare Communication Graph you will be able to consistently track important PD symptoms. This tool will allow you to identify any changes in symptoms and make visits with your healthcare professionals focused and productive.

How to Use This Tool

You will be asked to rate how you feel in several specific areas.

The areas of focus are:

Motor Symptoms:

  • Tremor
  • Rigidity
  • Balance/Walking difficulties
  • Motor fluctuations/dyskinesia
Non-Motor Symptoms:

  • Fatigue/Sleep disturbances
  • Anxiety/Depression/Memory
  • Swallowing
  • Gastrointestinal Issues/Constipation
  • Sexual concerns

APDA Healthcare Communication Graph