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?

[ninja_form id=5]


October 10, 2019 – 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. .

Our speaker will be 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. He is also uniquely skilled and experienced in botulinium injections for dystonia, providing patients with optimum results. Patients value his comprehensive and compassionate approach: “The best that I can offer is my time and expertise,” explains Dr. Molho. “These are complex cases and I feel it’s important to take the time to distinguish each individual patient’s needs, tolerance for medication and lifestyle in order to ensure the best treatment outcomes.”
Dr. Molho is a graduate of Albany Medical College where he currently serves as a professor of neurology and the Riley Family Chair in Parkinson’s Disease. At Albany Medical Center, he completed his residency in neurology and a fellowship in movement disorders with Dr. Stewart Factor. He has served as the co-director of the Tardive Dyskinesia Clinic and Huntington’s Disease Comprehensive Care Center, as well as the course director of the 2nd year clinical neurosciences course at Albany Medical College. As an active member of the American Academy of Neurology and Movement Disorders Society, Parkinson Study Group, Huntington Study Group and Dystonia Study Group, Dr. Molho is undoubtedly a leader in his field uncovering medical breakthroughs and providing exceptional patient care.


CARE Act wallet card

The Caregiver Advise, Record, Enable (CARE) Act helps family caregivers as their loved ones go into the hospital and as they transition home.

The CARE Act requires hospitals to:

  • Record the name of the family caregiver on the medical record of your loved one.
  • Inform the family caregivers when their  loved one is to be discharged.
  • Provide the family caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home.

The CARE Act has passed in NY State,

click here to download a CARE Act wallet card to place in your and your loved one’s wallets—next to your insurance cards. That way, you’ll both have important information about this new law available when you need it most

If you are a family caregiver, you’re not alone.

To find the tools and resources you need, go to the AARP Caregiver Resource Center.


Opportunity to participate in research study

Help us learn how to better diagnose Parkinson’s Disease at an earlier stage.

Overview

The purpose of this study is to help identify molecules in the saliva, called microRNAs, that can serve as biomarkers for Parkinson’s disease. These biomarkers may allow earlier diagnosis and treatment of this disease. A doctor will ask each participant to perform a brief series of neurological tests, in addition to cognitive and balance tests. A small amount of saliva will then be collected in order to measure microRNA.

We offer flexible scheduling.

See printable tri-fold brochure

Quadrant Biosciences works with top academic institutions, medical researchers and engineers to translate breakthrough findings into thoughtfully developed and scientifically sound assessment applications.

Help us learn how to better diagnose Parkinson’s Disease at an earlier stage. Each participant is paid $25.

Adults – recently diagnosed with Parkinson’s Disease – are eligible for the study, “Molecular and functional biomarkers of Parkinson’s Disease”

CLINICAL STUDY OF PARKINSON’S DISEASE THIS STUDY MIGHT BE FOR YOU IF:

◆ You have recently been diagnosed with Parkinson’s Disease

◆ You would like to help us learn how microRNA markers change in Parkinson’s Disease & improve our understanding of the disease.

A clinical study for adults with recently diagnosed Parkinson’s Disease. MOLECULAR AND FUNCTIONAL BIOMARKERS OF PARKINSON’S DISEASE

OVERVIEW The purpose of this study is to help identify molecules in the saliva, called microRNAs, that can serve as biomarkers for Parkinson’s disease. These biomarkers may allow earlier diagnosis and treatment of this disease. A doctor will ask each participant to perform a brief series of neurological tests, in addition to cognitive and balance tests. A small amount of saliva will then be collected in order to measure microRNA. We offer flexible scheduling.

GOAL OF THIS STUDY Currently, only a very small number of biological tests are available for early diagnosis of Parkinson’s Disease, and these are not informative for all types of the disease. By finding microRNA markers with higher levels in Parkinson’s patients, we may be able to diagnose this disease at an earlier stage and also improve our understanding of the disease. We hope that by discovering new markers and earlier diagnosis of Parkinson’s disease, the quality of life of patients can be improved.

DO YOU QUALIFY? We are looking for participants recently diagnosed with Parkinson’s Disease. As a small compensation for your participation, each participant will receive $25. We will also pay for parking. FOR MORE INFORMATION or to schedule your participation, form at:

If you qualify for the study, an information packet will be mailed to you prior to your study appointment.


PD SELF – a learning program designed to help people with Parkinson’s better manage their disease

PD SELF program starting in September 2019.

Please give us your contact information, by filling in the interest form below, to reserve a place in the program starting September 2019.

PD SELF – Parkinson’s Self-Efficacy Learning Forum – A national program, now being offered in Albany for the second time, that provides people with Parkinson’s an in-depth understanding of the disease and the tools to manage it with confidence.  There is no cost to attend.  Registration is required.  Space is limited.

This self-efficacy learning forum is specifically designed for those who have been diagnosed with Parkinson’s disease (PD) within the past three years and their care partners. We will learn about the disease and how to approach goals, tasks and challenges.

Sessions will be held starting Wednesday September 18, 2019.  There will be a total of eight monthly sessions. Each session will be from 4:00 – 7:00 on the third Wednesday of the month.  We will meet at the Terrace Community Room at Beverwyck in Slingerlands. – 41 Beverwyck Lane, Slingerlands, NY 12159. (directions)

Debra Virtanen and Jud Eson traveled to Denver in May 2018 to attend a training course to learn how to facilitate the PD SELF program.  Facilitation teams, including a person with a clinical background and a person with PD, came from 11 locations across the country to learn.  Team Albany included Debra, a physical therapist, and Jud, a person with Parkinson’s.  This program is distinct and separate from the Capital District Parkinson’s Support Group.

Many people are handed a diagnosis with very little guidance on what to do next. But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.

Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.

Participants are provided with a PD SELF Curriculum Field Guide containing the course content for each of the eight modules.

  1. Adapting to Parkinson’s Disease
  2. Acquiring Self-Efficacy
  3. Creating your personal health care network
  4. Understanding PD medications and treatments including complementary and alternative medicine
  5. Benefiting from exercise and neuro-plasticity
  6. Understanding cognition and non-motor symptoms
  7. Strengthening the relationship between people with Parkinson’s and Care Partner
  8. Going forward

Over the eight modules, participants learn how to master their own relationship to Parkinson’s. The skills and behaviors learned include:

  • Setting and achieving goals
  • Self-monitoring
  • Keeping health care records
  • Communicating with your doctor
  • Establishing new routines
  • Overcoming obstacles
  • Problem solving
  • Reflection and journaling
  • Managing negative emotions
  • Realistic optimism
  • Resilience and tenacity
  • Self-Advocacy

For more information and to register, please visit the PD SELF website at PDSELF.org or send an email to PDSELF.Albany@gmail.com .

If you are interested  in registering, fill out an interest form

Spread the word with this flyer


Didier Thomas – 1928- 2019 | Obituary


Didier Octave Thomas was born in Paris, France on September 7, 1928, the youngest of nine children, and died in Schenectady on February 10, 2019. He was the son of the late Octave and Gabrielle Thomas. He studied architecture at l’Ecole des Beaux Arts in Paris, where he met Susan Felstiner of Mount Vernon, N.Y. during her junior year abroad. They were married in Mount Vernon on April 26, 1953, and lived in various places over the years in New York, New Jersey and Massachusetts. After two years service in the U.S. Army, Didier worked in architectural design, urban planning and historic preservation, culminating in ten years as associate director of planning at Harvard University. After retirement, he led a community organization that converted Boston’s landmark 19th century water pumping station into the Waterworks Museum. He is survived by his wife Susan; daughter Katherine Rosenblatt (Michael) of Slingerlands; son Daniel Thomas (Susanne) of Leiden, The Netherlands; and four grandchildren, Rachel, Julien, Joshua and Zachary. A private burial was held on Tuesday, February 12, 2019, in the Beth Emeth Cemetery. Shiva will be held on Sunday, February 17, from 6:30 – 8:30 p.m. at the home of Katherine and Michael Rosenblatt, 6 Fife Dr., Slingerlands. Donations in memory of Didier Thomas may be made to the Waterworks Museum waterworksmuseum.org To leave a condolence message for the family, please visit, levinememorialchapel.com


Lookin for people with PD for research study

A clinical study for adults with recently diagnosed Parkinson’s Disease. MOLECULAR AND FUNCTIONAL BIOMARKERS OF PARKINSON’S DISEASE

OVERVIEW The purpose of this study is to help identify molecules in the saliva, called microRNAs, that can serve as biomarkers for Parkinson’s disease. These biomarkers may allow earlier diagnosis and treatment of this disease. A doctor will ask each participant to perform a brief series of neurological tests, in addition to cognitive and balance tests. A small amount of saliva will then be collected in order to measure microRNA. We offer flexible scheduling.

GOAL OF THIS STUDY Currently, only a very small number of biological tests are available for early diagnosis of Parkinson’s Disease, and these are not informative for all types of the disease. By finding microRNA markers with higher levels in Parkinson’s patients, we may be able to diagnose this disease at an earlier stage and also improve our understanding of the disease. We hope that by discovering new markers and earlier diagnosis of Parkinson’s disease, the quality of life of patients can be improved. DO YOU QUALIFY? We are looking for participants recently diagnosed with Parkinson’s Disease. As a small compensation for your participation, each participant will receive $25. We will also pay for parking

FOR MORE INFORMATION or to schedule your participation, visit the study website and complete a contact form at: https://quadrantbiosciences.com/parkinsonsresearch/ If you qualify for the study, an information packet will be mailed to you prior to your study appointment.

Get printable tri-fold brochure about the study:


April 13, 2019 – Pints for Parkinson’s

April 13, 2019 3PM at Martel’s at Capital Hills 65 ONeil Rd, Albany, New York 12208

Hosted by Karen Toomey Chenel and Lisa Toomey Silipo

Open to all. My family would love it if you could come share some pints and tasty snacks with us on April 13th at Martels! All proceeds will go to Albany Medical Center’s Parkinson’s Research Program in honor of my Dad! ♥️ Please send in payment by April 11th!!

No photo description available.



March 30, 2019 – Bruce Plotsky’s 60th Birthday Party!

Come as a Super Hero … or you will be assigned one.
Must be 21 or older … let’s not traumatize youngsters.
When: Saturday March 30, 2019 … 7pm to 10pm
Where: American Legion, 16 W. Poplar Drive, Delmar
Why: Bruce’s Birthday and Hope Soars Fundraiser

The party…there will be a DJ Extraordinaire.  Be prepared to dance!
There will be finger food, snacks, and a cash bar.
There will be prizes. Categories include:
Most original, Closest to the “actual” Super Hero, Most likely Super Hero to get arrested,  plus more…
Lots of Audience participation.

Some Costume Ideas:
The Super Hero you always knew you were (Wonder Woman, Spider Man, Captain America, The Hulk, etc.).
Go for it…How many times will you be able to show who you really are (in public).
Use your imagination….
Any of the “Super Heroes” from the movie Mystery Men (including PMS Girl).
Superman… the later years. With a big belly, 3 day beard growth, and a can of cheap beer.
Super Hero of Little Help:
Jar Man…able to open stuck glass jars.
Tissue Girl… Always ready with a tissue.
The Future Tellers … two people trade off telling the future, second person correcting it/down playing it.
     1st person: There will be a huge amount of water falling from the sky tomorrow. 2nd person: It’s going to rain

RSVP by 3/23/19 to Bruce
Cellphone:
518-368-2906 text responses
Email: bplotsky@gmail.com
Please include how many are in your group when you RSVP. Also, please NOTE: No one under 21 please.

No gifts please, but contributions to Hope Soars is greatly appreciated (whether or not you come to the party).
 All money raised is put towards local Parkinson’s Support programs and research. See:   http://www.hopesoars.org

Some of the many programs Hope Soars helps fund:

  • PD Spin (Stationary bike) classes at most Capital District YMCAs.
  • PD Dance class Tuesdays at the Cicotti Center (Colonie, off of Wolf Road).
  • Yoga for PD Thursdays at Honest Weight (Albany).
  • PD Boxing class Fridays at Schott’s Boxing (Albany).

Carleton A. Foster | 1935 – 2018 | Obituary

Carleton A. Foster, 83, of Jackson, passed away Tuesday, Christmas Day, Dec. 25, 2018 at the Center for Nursing and Rehabilitation at Hoosick Falls.

Carleton was born a Shushan farm boy on Sept. 20, 1935 and was the son of the late Anderson and Clara (Vaughn) Foster. He attended a two-room schoolhouse in Shushan and graduated from Salem Washington Academy. He had worked at Nash Rambler & Studebaker and also at Reynolds Tool & Die before starting his own business, “Puzzleworks” making children’s wooden puzzles and the business became C.A. Foster design & creator of fine cherry wood kitchen utensils and cherry wood sculptures.

Carleton was a charter member of the Valley Artisan’s Market, where his cherry wood creations were displayed and sold. He also was noted for the beautiful baritone voice and trained at the Troy Conservatory of Music. He was past President of the Washington County Historical Society and the Battenkill Snow Drifters. He was Past Master of the Cambridge Valley Lodge No. 481 F&AM Masonic Lodge; he was Lecturer of the Cambridge Valley No. 147 Order of the Eastern Star. Carleton also supported the Covered Bridge Association, the Cambridge Historical Society & Museum, and the Historic Salem Courthouse.

He enjoyed Formula 1 racing and working at Lime Rock Park in Connecticut and also at Watkins Glen. Carleton did hill climb racing and was a Marshal for road races. He was noted at the Saratoga Auto Museum as a driver.

He had a variety of interests which include painting and sketching and watching University of Connecticut Women’s Basketball. He started the annual tradition of the Shushan Bonfire.

In addition to his parents, he was predeceased by his first wife, Joan Tully Foster.

Carleton is survived by his wife, Carol Brownell; his children, Lydia (Christopher) Owen of Columbia, South Carolina and Hillary (Rev. Jarrett) Allebach of Worcester, Massachusetts; a brother, George Foster of Shushan; mother-in-law, Leta Tully of Cambridge; grandchildren, Vaughn, Aquilla, Blaize, Porsha, Ty, Wesley, Briana and Isaac. He is also survived by many nieces and nephews.

Memorial contributions in memory of Carleton may be made to the Center for Nursing and Rehabilitation at Hoosick Falls, 21 Danforth St., Hoosick Falls, NY 12090 Attn: Resident Fund or Michael J. Fox Foundation for Parkinson’s Research, P.O. Box 5014, Hagerstown, MD 21741-5014.

Arrangements are with Ackley, Ross & Gariepy Funeral Home, Cambridge.


Caregiver online resources

[The Parkinson’s Podcast™ ]
ADVICE FOR PARKINSON’S CARE PARTNERS WITH CONNIE CARPENTER PHINNEY
https://www.davisphinneyfoundation.org/blog/podcast-advice-for-parkinsons-care-partners-connie-carpenter-phinney/

​​Caring and Coping is a comprehensive guide for caregivers of people with Parkinson’s at any stage.
https://parkinson.org/pd-library/books/caring-and-coping

Caring for You (the Caregiver)
You may be involved in assisting your loved one with many activities of daily living and medical tasks, as well as maintaining a household; shopping and preparing meals; organizing records, papers and appointments; transporting your loved one to health care visits; keeping up with social and family relationships and many other tasks. At the same time, you may be working, raising children or grandchildren or coping with your own health or personal issues.
https://parkinson.org/pd-library/tip-sheets/caring-for-you

PD Partnership
https://f5h3y5n7.stackpathcdn.com/sites/default/files/attachments/pd_partnership_14.pdf

Intimacy and PD
https://f5h3y5n7.stackpathcdn.com/sites/default/files/Intimacy%20and%20PD.pdf

Communication and PD
https://www.parkinson.org/sites/default/files/Communication.pdf

Slides from PD Expert Briefing: What’s Missing? Communication and the PD Partnership https://www.parkinson.org/sites/default/files/Communication.pdf

BOOKS

Caring with Courage and Compassion
https://www.amazon.com/Caring-Courage-Compassion/dp/B0039OIOTI


Parkinson’s Disease and the Family
https://www.amazon.com/Parkinsons-Disease-Family-Harvard-University/dp/067401751X

Journaling Toward Wholeness
https://www.amazon.com/Journaling-Toward-Wholeness-Develop-Practice-ebook/dp/B0714L6Y4P


Michael E. Neaton of Green Island, New York | 1940 – 2019 | Obituary

Michael Edward Neaton passed into eternal life, at the home he was born in, on Wednesday, January 16, 2019. At his side was his life partner and caregiver Geri de Seve. Michael’s grace, enthusiasm for life and incredibly positive attitude never faded during his long battle with Parkinson’s disease.

Born on May 20, 1940 in Green Island NY, Michael was the youngest of six children of Jane and William Neaton. He graduated from Catholic Central High School in 1958 and was ordained into the Roman Catholic priesthood in 1966.

During his time at St Mary’s parish from 1969 to 1972, he earned a Master’s Degree in counseling and was the Director of the CYO in Troy, NY. In 1973, after serving as a monk at Weston Priory, he co-founded The Priory of St. Benedict in Chestertown, NY.  Known for his work throughout the Adirondack community, he was a beloved, vibrant presence there.

Michael lived humbly and spread messages of love, respect and inclusion. He continued his progressive commitment to social issues as he returned to civilian life in 1986. He worked for 16 years as an education counselor at Coxsackie and Green Correctional Facilities.

He met the love of his life, Geri de Seve, in 1990, and quickly captured her heart with his radiant smile. For over 28 years they shared family, travel, opera, skiing and hiking. In the 1990s, Michael became a “46er,” having climbed all 46 Adirondack high peaks.  He served on the Board of Governors of the ADK Mountain Club, and also served his Green Island community as a Town Councilman.

Michael was predeceased by his brothers Bernard (Terry) and James, and his sister Mary Jane (late Paul) Zimmer. He is survived by his siblings, William (Marlin) and John (late Lupe) Neaton, and several nieces and nephews, as well as Geri and her family, Steve (Sabine Aronowsky), Mike (Daniela Kostova), Jim (Kian Tjong) and Karen (John Fairbairn) de Seve. He was “Grandpa Michael” to Delphine, Vega, Ellery and Cyane.

Many thanks to the wonderful friends who visited Michael at home over the years, to his service coordinator, to the staffs at Eddy Daybreak in Cohoes, and at Albany VNA, to his nurses and therapists, and especially to his dedicated caregivers, Patty, Allene, Ugonda, Shameika, Rashida, Philip, Kasanna, Seanyel and Brenda.  Without their help Michael could not have stayed in his home. Thanks also to Patty, Bob and Rick for their special help, to Dr. Eric Molho and to Doctor Kevin Costello for his amazing care.

Funeral from the McNulty Funeral Home, 147 Hudson Avenue, Green Island on Saturday, January 26 at 8:45 a.m. and at Our Lady of Victory Church, 55 North Lake Avenue in Troy at 9:30 a.m. where a Mass of Christian Burial will be celebrated by Rev. Randall Patterson.   Interment will be beside his parents in St. Peter’s Cemetery, Troy.  If desired, donations may be made to Joseph’s House or to Unity House’s Deuteronomy fund.


Poster and cards added to Albany Med movement disorder office

Part of the mission of the Capital District Parkinson’s Support Group is to increase awareness.  To that end, having accessible information about our group in the doctor’s office should increase attendance and diversity.

We now have a poster hanging in the waiting room of the Albany Medical Center movement disorder clinic.  There are also matching business cards to take.

Thank you to Jud Eson, Nancy Eson and Rachel Eson, for help on the poster and card  design.


Researchers developing new therapy to treat Parkinson’s disease

Recent strides in stem cell technology mean that quality, consistency, activity, and safety can be assured and that it is possible to grow essentially unlimited amounts of dopamine-producing nerve cells in the laboratory for transplantation, said a study, published in the Journal of Parkinson’s Disease. Read more….

https://www.timesnownews.com/health/article/researchers-developing-new-therapy-to-treat-parkinsons-disease/367794


July 11, 2019 meeting notice

Join the CDPSG Support Group for the monthly meeting.

July 11, 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 :

Topic: Reflections from the World Parkinson’s Congress in Kyoto Japan as told by Albany members that went to the conference.


June 13, 2019 meeting notice

Join the CDPSG Support Group for the monthly meeting.

June 13, 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 :

To be determined


March 5, 2019 – Expert Briefing – Seeing Clearly with PD: Vision Changes

Expert Briefing – Seeing Clearly with PD: Vision Changes

Visual changes can impact daily fuction and quality of life for people living with Parkinson’s. In this webinar, Dr. Daniel R. Gold will share the most common visual changes, explain why these conditions exist and address ways to treat them.

Learn more about vision changes with PD, such as ocular surface irritation, hallucinations and blurry vision, by registering for our free Expert Briefing webinar taking place on Tuesday, March 5, 2019 from 1:00-2:00 p.m. ET.

Who: Dan Gold, DO, Assistant Professor of Neurology, Opthalmology, Neurosurgery, Otolaryngology-Head and Neck Surgery at The Johns Hopkins Hospital.

How to Watch: Register here to watch online or listen by phone.


April 6th, 2019 – Tools for Caregivers

Resources You Can Use When a Senior Relies on You.

When: April 6th, 2019

Where: at the Bulmer Communications Center at HVCC .

A free event for you – the caregiver – to learn, share and explore the many different services and options available to the seniors of the Capital Region. Attend educational workshops and meet with local professionals at the vendor fair. Registration is required. Please email crccreg@gmail.com or call Angela at 518- 279-5502 to register. Click here for more info: Tools for Caregivers 2019


Can we repair the brain? The promise of stem cell technologies for treating Parkinson’s disease

Cell replacement may play an increasing role in alleviating the motor symptoms of Parkinson’s disease (PD) in future. Writing in a special supplement to the Journal of Parkinson’s Disease, experts describe how newly developed stem cell technologies could be used to treat the disease and discuss the great promise, as well as the significant challenges, of stem cell treatment.

Read more https://www.sciencedaily.com/releases/2019/02/190214153141.htm


May 9, 2019 Meeting notice

Join the CDPSG Support Group for the monthly meeting.

May 9, 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 :

To be determined


August 11, 2019 – Summer Picnic

Join the Capital District Parkinson’s Support Group for our Summer Picnic.

Date: Sunday, August 11
Time: 12 noon until 3:00 pm
Place: The Crossings Park, Colonie


There will be no “regular” Thursday meeting in August. There is no charge to enter the park. The facility has ample parking nearby and  a covered, wheelchair accessible, pavilion with picnic tables. There are wheelchair accessible bathrooms on level ground a short distance from the parking lot and pavilion. Friends, relatives, children, grandchildren and leashed dogs are also welcome.

A number of fun activities are also being planned.


Directions:

Enter the park from the Albany Shaker Road entrance. Follow the park road 0.6 mile to the end. You will be able to park there and you will see the pavilion.

GPS to the entry to the Crossings Park on Albany Shaker Road:

580 Albany Shaker Road, Loudonville, NY 12211

Map

Directions to the picnic:
Starting from the corner of Wolf Road and Albany Shaker Road (exit 4 on Northway)​
Go east on Albany Shaker (towards Albany).

In .5 mile take first exit of traffic circle to stay on Albany Shaker

In .4 mile turn right into the Crossings Park

Follow park road for 0.6 mile to end of road at parking circle.

You can see pavilion from there.
For more information about our group and about Parkinson’s visit our website at www.cdparkinsons.org


Young Blood Plasma Parkinson’s Disease Study One-Month Results introduced at the Texas Neurological Society

AUSTIN, Texas, Jan. 31, 2019 /PRNewswire/ — The Neurology Center, a medical group practice of top doctors devoted to excellence in care, located in Houston, Texas, working in conjunction with two leading neurology and anti-aging specialists from Houston, will introduce on Friday initial, one-month results of their randomized controlled study of intravenously administering NuPlasma® young blood plasma into the first fourteen of twenty Parkinson’s disease patients.

In a landmark investigation that addresses a well-known neurological disorder that affects more than 10 million people worldwide, for which there has been previously no known treatment that can slow the progression of the disease, the randomized double-blind, placebo-controlled study, designed to evaluate the efficacy of 25 ml/kg intravenous NuPlasma® young Fresh Frozen Plasma (yFFP) administered in two doses over three days, realized dramatic improvements in critical disease-conditions such as pain, facial expression, speech, handwriting, tremors, rigidity and falling.  yFFP recipients achieved improvements in 30/43 assessment categories, with yFFP outperforming the placebo in every assessment subset.

Full and continuing study disease assessment and blood laboratory data is accessible online at:  www.youngplasmastudy.com.


‘We may not find a cure but we will be closer because of this’

Federal Health Minister Greg Hunt will announce $30 million in funding for the Parkinson’s Disease Mission, which combines clinical trials and genomics research led by the Garvan Institute of Medical Research.

Despite dedicated research since the 1960s, the causes of Parkinson’s are largely unknown and treatments only mask the symptoms. There is an urgent need to identify drugs that will slow or stop the disease, Mr Hunt said.

The mission’s first clinical trial will assign 300 patients to randomly receive existing drugs for diabetes, asthma, cardiovascular disease, a supplement or placebo.

Lead researcher, neurologist Professor Simon Lewis said the trials should give patients “realistic hope, not hype”. But the beauty of the Parkinson’s Disease Mission was that it will combine clinical trials and “really clever science”, Professor Lewis said.

Read more at Sydney Morning hearald



Subjective Cognitive Decline Could Help Predict Parkinson’s Dementia, Study Contends

Increasing evidence suggests that subjective cognitive decline is associated with Alzheimer’s disease pathology and with an increased risk for future dementia development. However, the clinical value of subjective cognitive decline in Parkinson’s disease (PD-SCD) is unclear. The aim of the present work was to characterize PD-SCD and its progression to dementia.

Statistical analyses revealed that language domain and, especially memory domain are good predictors of dementia.

Conclusions

The present investigation is the first to conduct a long-term follow-up study of PD-SCD and its relationship with the development of dementia. The results provide relevant data about the characterization of SCD in PD patients and show that PD-SCD is a risk factor for progression to dementia

read more https://link.springer.com/article/10.1007/s00415-019-09197-0


April 11, 2019 – Meeting Notice

Join the CDPSG Support Group for the monthly meeting.

April 11, 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 : Deb Riitano – Commissioner Albany County Department for Aging

Albany County Department for Aging (ACDFA) strives to maximize choice and self-direction for the people of Albany County as they age.

ACDFA’s mission is to connect adults age 60+ and their families/caregivers with community resources that promote independence, self-direction, dignity and improved quality of life.

We will hear about programs administered by the Department such as:

  • information & assistance
  • adult day care
  • in-home health services
  • caregiver support programs
  • volunteer opportunities
  • consumer and caregiver supports such as respite care, case/care management
  • facility based services such as adult day care programs and nursing homes
  • home based services such as home health or personal care services and personal emergency response systems
  • insurance/benefit information and counseling regarding long term care insurance, Medicare or Medicaid, Veteran’s and other benefitsprotective/preventative services for information about how to prevent or report situations of abuse, neglect, or exploitation of adults (over the age of 18)
  • residential housing options and supports such as adult residential care facilities, assisted living facilities, low income/subsidized housing and utility payment assistance programs
  • support groups and counseling for caregivers, children and adults with disabilities or aging/older adults
  • transportation related information such as automobile/van adaptations and programs to transport the disabled and/or senior citizens
  • information and assistance may also be available regarding such things as legal services, mental health and/or substance abuse programs, home modification programs and property tax exemptions

CDC Publication – What can you do to stay independent?

Do you or your loved ones have a plan to stay safe, mobile, and independent as you age? Many people make financial plans for retirement, but don’t consider how to plan for potential mobility changes. The mobility planning tool can guide you to take action today to help keep yourself—or your loved ones—safe, mobile, and independent tomorrow.

dowmload here

https://www.cdc.gov/motorvehiclesafety/pdf/older_adult_drivers/CDC-AdultMobilityTool-9.27.pdf


January 17, 2019 – Parkinson’s & Neurological Diseases Advocacy & Education Group


Join others who live with Parkinson’s and other neurological diseases as we share, learn from the experts, and live to the fullest.


Please join us on
Thursday, January 17, 2019 from 2-3 PM
at the
Mayfield Presbyterian Church
22 North Main Street, Mayfield, NY 12117

Guest speaker will be Jamie Marshall, from the Resource Center for Independent Living who will discuss Respite Care and other services provided by RCIL

For more information, contact Rev. Bonnie Orth at 518-661-6566


Book: Yoga and Parkinson’s Disease: A Journey to Health and Healing

Paperback – August 28, 2013 by Peggy Van Hulsteyn

Yoga and Parkinson’s Disease is a practical how to guide to using yoga to manage stress, improve mental alertness, increase flexibility, correct posture and improve the quality-of-life of readers with Parkinson’s. It follows the author’s own experience and research studies in the subject that have shown a correlation between yoga practice and better health and outcomes after a Parkinson’s Disease diagnosis. More than simply an exercise guide, the book is a deeply soothing form of moving meditation and physical activity that is a safe way to rebuild strength, stamina, and flexibility. 

Yoga and Parkinson’s Disease shows how yoga ameliorates difficulties that accompany Parkinson’s, including mobility, range of motion, balance, and guides towards leading a healthier life.


Meditation, mindfulness, relaxation techniques

Navy SEAL calming technique

This calming technique is called box breathing, and you can try it yourself. It will only take you 16 seconds to cycle through the method one time. Just repeat the cycle as long as it takes you to feel relaxed. Breathe in for four seconds. Make sure all the air has been expelled from your lungs before you start to inhale. Once you start sucking up your air, make sure to really fill those lungs. Hold your breath for four seconds. No more inhaling at this point, and don’t let any air escape yet. Exhale for four seconds. Let the air out of your lungs at an even rate for the whole stretch of time, and make sure to get it all out. Hold your lungs empty for four seconds. It may be tempting to suck in some more air immediately after letting it all out, but just hang on for four.

https://medium.freecodecamp.org/a-navy-seal-breathing-technique-you-can-use-to-keep-calm-when-coding-f05a66da8067
Basic Meditation techniques

http://bemindful.org/basicinstru.htm
Guided meditations

https://www.uclahealth.org/marc/body.cfm?id=22&iirf_redirect=1
Easy relaxation techniques

https://www.innerhealthstudio.com/
Relaxation Downloads

https://students.dartmouth.edu/wellness-center/wellness-mindfulness/relaxation-downloads

Techniques for managing stress

https://www.parkinson.org/pd-library/fact-sheets/techniques-managing-stress

Visualization and Guided ImageryGuided imagery and visualization are techniques used to help you imagine yourself being in a particular state. Recordings are designed to help you visualize yourself relaxing or engaging in positive changes or actions. These exercises can help you reduce anxiety, improve self-confidence, or cope more effectively with difficult situations. https://www.uhcl.edu/counseling-services/resources/visualization
“Meditation made easy”

https://www.headspace.com/

Many of the resources found on p. 141 – 143 in the student handbook can be found at https://www.parkinson.org/pd-library


FDA approves focused ultrasound to treat symptom of Parkinson’s

December 21, 2018 — Insightec announced that the U.S. Food and Drug Administration (FDA) has approved an expansion of the indication of Exablate Neuro to include the treatment of patients with tremor-dominant Parkinson’s disease (PD).

The Exablate Neuro is a focused ultrasound device for performing incisionless thalamotomy guided by magnetic resonance imaging (MRI). This expansion adds medication-refractory tremor from PD to the current Exablate Neuro indication for incisionless, focused ultrasound thalamotomy for medication-refractory essential tremor. Read more https://www.itnonline.com/content/fda-approves-exablate-neuro-tremor-dominant-parkinsons-treatment


March 14, 2019 Meeting

Join the CDPSG Support Group for the monthly meeting.

March 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 :

Deb Foss – Yoga.  Deb has a passion for sharing healing methods from a variety of psychological and spiritual traditions, including Yoga, Buddhist meditation, Psychosynthesis and Gestalt therapy. Her warm, engaging style makes learning accessible and fun. She is a Kripalu certified facilitator, yoga teacher and bodyworker.


New connection between the gut and brain

Interestingly, there is a growing body of work showing that there is communication between the gut and brain, now commonly dubbed the gut–brain axis. The disruption of the gut–brain axis contributes to a diverse range of diseases, including Parkinson’s disease and irritable bowel syndrome.

Read more 


Speech and Swallowing in Parkinson’s Disease

In addition to the classic motor symptoms of Parkinson’s (tremor, slowness, stiffness, walking and/or balance problems), a person may develop changes in speech and/or swallowing. Although these problems can occur at any time in the course of Parkinson’s, they are more common as disease progresses.

Speech and swallowing therapy exercises, combined with Parkinson’s medication adjustment and, if necessary, dietary and/or behavioral modifications are the mainstays of management. Read more at https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?speech-swallowing

LSVT LOUD LSVT LOUD is an effective speech treatment for people with Parkinson’s disease (PD) and other neurological conditions.  Named for Mrs. Lee Silverman (Lee Silverman Voice Treatment), a woman living with PD, it was developed by Dr. Lorraine Ramig and has been scientifically studied for over 25 years with support from the National Institute for Deafness and other Communication Disorders within the National Institutes of Health (NIH) and other funding organizations. LSVT LOUD trains people with PD to use their voice at a more normal loudness level while speaking at home, work, or in the community. Read more at https://www.lsvtglobal.com/LSVTLoud


Where are we with surgery for PD?

WPC BLOG 
Elena Moro, MD, PhD is a Professor of Neurology at Grenoble Alpes University in Grenoble, France. Elena Moro was a speaker at the 3rd World Parkinson Congress in Montreal, and she is a current member of the Program Committee for the 5th World Parkinson Congress in Kyoto, Japan.

WHERE ARE WE WITH SURGERY FOR PD?
I have had the privilege to be involved in surgery to treat Parkinson’s disease (PD) for over 20 years. I still remember the first patients with severe advanced PD who had deep brain stimulation (DBS) surgery in the early 90’s. After a lot of suffering, these patients could have a decent life back: no more violent dyskinesia or very painful and disabling dystonia, no more horrible tremor and motor fluctuations. It really was like a miracle! I also still remember the hours spent in the operating room to test treatment efficacy and side-effects…. A great team effort, but so rewarding for everybody!

Read more at https://www.worldpdcongress.org/home/2018/11/27/where-are-we-with-surgery-for-pd