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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?


WORLD PARKINSONS CONGRESS – KYOTO, JAPAN 4 – 7 JUNE 2019

There has been strong interest in our support group in attending the next World Parkinsons Congress in Kyoto, Japan.

I should emphasise that I am happy to play a coordinating and advisory role but cannot be a travel agent or “guide” in the traditional sense. Attendees will need to make their own travel and accommodation arrangements. I will be happy to make suggestions and, depending on the level of interest, organize some sight seeing in Tokyo prior to the Congress.

THE CONGRESS  – www.wpc2019.org

This is held every three years and brings together doctors, researchers, clinicians, people living with PD, caregivers and others. Participants are from all over the world and there is a great deal of interaction between participants. There were more than 4000 participants in Portland.

Sharon and I have attended the past two congresses in Montreal and Portland, OR and a stand out feature was the vigorous debate between medical professionals and also between people living with PD, their caregivers and clinicians. In the summing up session in Portland, several medical professionals said that the Congress was unique in that they received much valuable feedback – and push back – from people living with PD. As it is a world congress, participants are able to share knowledge and experience from many countries.

The web site is up and contains a lot of general information.

According to the organisers, attendance is going to be limited and registration will open on September 10. The cost is $300 for people with PD and also for caregivers. The cost increases to $350 after Feb 28 2019.

ACCOMMODATION AT THE CONGRESS

The organisers make arrangements with specific hotels near the venue and represent the full range from high end to moderate. In both Montreal and Portland the moderately priced accommodation booked out very quickly. The website is suggesting $150/night as the average for Kyoto.

There are other options such as Airbnb and “business hotels”  – but you need to keep in mind that Japan is a very densely populated country and space is always at a premium. The cheaper end will have very small rooms and bathrooms. Also, Kyoto is a hilly city and roads are very narrow with narrow sidewalks if at all.

For that reason and because trains and buses are often crowded and not designed for large pieces of luggage I cannot emphasise strongly enough that you need to minimize the amount of baggage you bring with you.

TRAVEL

Expedia is showing economy fares from JFK and Boston to Tokyo (Narita (90km from central Tokyo) – or Haneda (20km)  ranging from about $850 on Chinese airlines via Beijing or Shanghai to nearly $2000 on US or Japan Airlines.

The nearest international airport to Kyoto is Osaka – Kansai International (KIX). Flights are more expensive than to Tokyo – particularly n US airlines.

Japan Airlines is offering a fare of $2600 JFK – Tokyo in their premium economy cabin – which I have found to be very good. Some people have also expressed interest in travelling to Australia after the congress and the fare JFK – Tokyo – Sydney return is $2700 in premium economy.

I have found the expedia “bundled” deals of travel and accommodation to be very good value in Japan – but again, you get what you pay for – rooms at the APA chain of hotels contain a double bed and approximately one foot of space around it – about 9 sq ft at the entrance and a bathroom about 12 sq feet. The very confined space can be challenge to those of us who have balance or movement issues.

TOKYO

While Kyoto is a fascinating city and, as the capital of Japan from 794 AD until 1868, contains a great deal of history, first time visitors should definitely spend a few days in Tokyo, one of the world’s great cities. Sharon and I lived there for 8 years and are familiar with its layout and points of interest. It has an extensive and extremely efficient subway system but does involve a lot of walking and stairs – and must be avoided in rush hour (the Japanese have an expression – “sushizume” – which means jammed into the train like grains of sushi rice in a mold. )

Taxis are plentiful but are expensive and very few drivers speak English.

I am looking into hiring a mini bus and driver which we could use to do our own tour. Cost is about Yen90000 – $800 – or $50 per person for a 16 seater.

If participants would like to spend say 3 days in Tokyo – I suggest we plan on arriving in Tokyo on May 31 – leaving the USA on 29/30 May.

The conference begins on Tues June 4 in the afternoon and we could depart for Kyoto on the Shinkansen (Bullet train –  200 mph) on Tues morning – travel time is 2 hours 15 mins. Cost is about $200 one way for a reserved seat (recommended)

KYOTO

Organisers at past congresses have arranged group tours to places of interest and I expect the Japanese organisers will also do this. Apart from the Imperial Palace, there are a number of famous temples and shrines in Kyoto – Kinkakuji (Golden pavilion) and Ryoan-ji (famous rock garden) – and many others. Kyoto was not damaged in WW2 and so the older parts of Kyoto date back many centuries. This includes the Gion district, home to geisha traditions. The city of Nara is nearby and was the capital prior to Kyoto.

Osaka was totally destroyed during WW2 and so does not feature much on the tourist trail.

Please monitor the web site and let me know if you have questions or need advice on making arrangements.

Commencing in November I propose that people intending to go to Kyoto meet for ½ hour prior to the regular meeting so we can continue the planning.

I’m looking forward to having a capital district group in Kyoto!

Ian Wing


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

Map

(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.



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 : TBD


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 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.


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


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

PD SELF – Parkinson’s Self-Efficacy Learning Forum – A national program, now being offered in Albany for the first time, that provides people with Parkinson’s with 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.

PD SELF is a learning program designed to help people diagnosed with Parkinson’s in the last three years manage their disease and their life with Parkinson’s.  We will learn about the disease and how to approach goals, tasks and challenges.

The first session will be held on Wednesday, September 12, 2018 from 4:00 – 7:00.  There will be a total of eight monthly sessions. Each subsequent session will be from 4:00 – 7:00 on the second Wednesday of the month.  We will meet at the Terrace Community Room at Beverwyck in Slingerlands. – 41 Beverwyck Lane, Slingerlands, NY 12159. (Map) (directions)

Debra Virtanen and Jud Eson traveled to Denver in May 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.  The program has been active for three years. This is the first time it will be offered in this area. 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 neuroplasticity
  6. Understanding cognition and nonmotor 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 these flyers

Printable PD SELF flyer

Printable Flyer #2 PD SELF Albany Flyer

Printable pd self cards

 


August 9, 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

TopicRachel Kurtz – Holistic Health Coach

Rachel Kurtz is focused on helping folks dealing with chronic illness, or pain. She has expressed a strong interest in movement disorders, especially people with Parkinson’s. She takes a multi-disciplined approach to dealing with her clients.

Rachel’s primary goal is to support and guide her clients, whether healthy or living with chronic pain or illness, to live a more healthy and fulfilling life. Working closely with her clients support system and health care practitioners, Rachel will develop customized programs to help achieve individual health and wellness needs. In addition, she uses
insights from the latest research in positive psychology and health.

From Here to Wellbeing
Rachel Kurtz, Holistic Health Coach
Located in Saratoga Springs
518-260-3973 * rkurtz09@gmail.com

See attached flyer

Rachel Kurtz_Health Coach_3-11-18


June 2, 2018 – Albany Med Educational Program

Albany Med
The Movement Disorders Center
Presents

An educational program for those living with Parkinson’s disease and their caregivers

Saturday, June 2, 2018
Albany Marriott, 189 Wolf Road

Reservations are required. To register, please call 518-264-4257 or email rindens@amc.edu by May 25, 2018

To accommodate as many patients as possible, we ask that all reservations be limited to no more than 4 people.

 

Program outline:

9:00 – Registration, Continental Breakfast

9:30 – Frequently asked questions – Jennifer Durphy, MD – Assistant professor of neurology

10:00 – Q & A Session/Break

10:20 – Living well with Parkinson’s – Steve Hovey – Davis Phinney Foundation

10:50 – Q & A Session/Break

11:10 Troubleshooting side effects – Octavian Adam, MD  – Associate professor of neurology

11:40 Final  Q & A Session

 

 


Gocovri Improves Dyskinesia in Parkinson’s Patients

From: https://parkinsonsnewstoday.com/2018/04/24/gocovri-improves-dyskinesia-over-long-term-parkinsons-phase-3-trial

Gocovri (amantadine) extended release oral capsules provided long-term improvements of motor complications in Parkinson’s disease patients, according to results from a Phase 3 clinical trial.

Gocovri, developed by Adamas Pharmaceuticals, is the only medication approved by the U.S. Food and Drug Administration for the treatment of dyskinesia — involuntary, jerky movements — in Parkinson’s patients who receive levodopa-based therapy, with or without accompanying dopaminergic medications.

In clinical studies, people with PD taking GOCOVRI experienced significantly less dyskinesia, as well as reduced “OFF” time resulting in better movement control.

GOCOVRI™ (amantadine) extended release capsules is the first and only FDA-approved prescription medication indicated to treat dyskinesia (sudden, uncontrolled movements) in people with Parkinson’s disease (PD) who are treated with levodopa therapy, with or without other medicines that increase the effects of dopamine in the brain. It is not known if GOCOVRI is safe and effective in children.

Read more

 


Driving and Parkinson’s

Driving allows personal freedom, control and independence. Many people with Parkinson’s disease (PD) continue to drive safely long after their diagnosis.

While Parkinson’s progression and medication side effects may affect a person’s driving ability, the diagnosis alone does not tell the whole story. Much depends on a person’s specific symptoms, as well as the presence of other age-related changes.

Though Parkinson’s may present driving challenges, there are many ways to maintain independence. If you are facing driving challenges, consider the following tips to help you take control of your transportation needs.

Local resources:


Sunnyview’s Driver Training Center offers the most comprehensive program of driver assessment, training, retraining, consulting about adaptive driving devices, and on-the-road evaluation for the disabled and elderly. In fact, Sunnyview is the only area hospital with such a program available to the public.

Our trained driver rehabilitation specialists discuss all findings and recommendations with clients and family members, as well as assisting with license renewal information as needed.

The goal is safety, and getting back on the road.

For more information, or to schedule an appointment, call 518-382-4569.

Sunnyview patient resource about driving evaluation

image title

http://www.sphp.com/driver-training-center-svh


More information from national PD organizations

https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?driving

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

 

 


Assistive technology

Vermont Assistive technology helps people with disabilities fully access their world. This technology can
be used as-is, or it can be modified or customized for an individual’s specific needs around the
home, on the job, and in the community. The Vermont Assistive Technology Program is
committed to helping people with disabilities of all ages get access to information about the
assistive technology they need and want. By doing so, we empower Vermonters with
enhanced independence, productivity and confidence for greater inclusion across our state.

Read more VATP_AT4ALL_One_Pager


Managing Financially: Advice For People With Chronic Illness

No one ever plans to have a catastrophic illness.

Most people go through life assuming that conditions such as organ failure, HIV/AIDS, cancer or hypertension will happen to someone else – not to them or their loved ones. But if a chronic disease does strike, individuals are confronted with a wide range of issues, one of which is finances.

If you are seriously ill and concerned that you have insufficient funds to maintain your quality of life, consider the information presented here before you do anything drastic such as selling your home or your life insurance policy. Also, retain the counsel of a professional comprehensive advisor. This individual should be someone who is not working on commission and with whom you have no conflict of interest. The advisor should examine your situation to suggest the wisest course of action.

Understand Your Financial Situation

The most important thing you can do is to get a clear picture of your financial situation – from assets to liabilities to borrowing sources. Once you thoroughly understand your financial situation, review these tips.

Read more


Discounts for people with disabilities

from https://www.huffingtonpost.com/jim-t-miller/how-to-find-discounts-for_b_9008436.html

Always Ask
The first thing to know is that most businesses that offer discounts to people with disabilities or their escorts don’t publicize them, so it’s important to always ask.

Also note that most nonprofit organizations and government agencies that provide disabled services or benefits will require proof of disability through a letter from your doctor or some other form of verification before they will accommodate you.

(more…)


Mime over matter

Rob Mermin, founder of Circus Smirkus, trained with legendary mime Marcel Marceau before embarking on a 40-year career in the theater and circus world. He will talk about how he adapts basic pantomime and circus techniques to help people with Parkinson’s cope with movement limitations. Mime techniques include visualization, body language, nonverbal communication, articulation of gesture, and creative use of imagery and space. Mime is a valuable method to enhance perception of one’s immediate movement problem, visualize a better result, and overcome the limitation through focused action. Come and put your Mime Over Matter!

Premiere Performance by the PD Players directed by Rob Mermin: The Parkinson’s Performance Troupe in “Mime Over Matter!” At the Unadilla Theater in E. Calais, Vermont – June 17, 2017

 

 


Medicare HelpLine

Beneficiary and Family Centered Care Quality Improvement Organizations (BFCC-QIO) help Medicare beneficiaries exercise their right to high-quality healthcare. They manage all beneficiary complaints and quality of care reviews to ensure consistency in the review process while taking into consideration local factors important to beneficiaries and their families. They also handle cases in which beneficiaries want to appeal a health care provider’s decision to discharge them from the hospital or discontinue other types of services. Beneficiary experiences, both good and bad, give the QIO Program the perspective to identify opportunities for improvement, develop solutions that address the real needs of patients, and inspire action by health professionals.

BFCC-QIOs, like Livanta, review appeals and complaints about health care for Medicare patients. Quality Innovation Network (QIN) QIOs work with providers to improve care.

While BFCC-QIOs are the primary point of contact for Medicare beneficiaries and their families, quality of care complaints can also be made by calling 1-800-MEDICARE.

Livanta BFCC-QIO HelpLine 866-815-5440

Please have the followinf information available when calling:

Medicare card and number
Date of birth
Address and phone number
Date of service
Provider contact information


Capital Region Caregiver Coalition

The Capital Region Caregiver Coalition is an informal group of professionals dedicated to educating caregivers about the resources available to them in New York’s Capital Region. Each member of our Coalition strives to live our mission throughout each of our respective jobs.

Our Mission: To promote community awareness, sensitivity to, and action around delivery of care to seniors.

http://www.capitalregioncaregiver.com


PD Library

PD Library.

If you have Parkinson’s disease or care for someone who does, you need information. And you might just find answers in the PD Library. The free online resource — maintained by the Parkinson’s Foundation — is a gold mine for anyone with an interest in the disease


In Parkinson’s Disease, early diagnosis does matter

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)

Carolyn Allen Zeiger, Ph.D.

Retired Licensed Psychologist and spouse of someone with Parkinson’s Disease

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.  

(more…)


April 18, 2018 – Guided hike at Peebles Island State Park

Hike Peebles Island State Park

Please join us for a 2 to 3 mile guided hike of Peebles Island State Park in Cohoes at 9 AM on April 18, 2018. We will meet at the Peebles Island parking lot. There may be a fee to park.
The terrain in mildly hilly, with great views of the Cohoes Falls and I have heard there is a nesting pair of eagles that should be visible from the trail. Friends and family are welcome.

Please contact Jim Slavin at jaslavin1@gmail.com to sign up.

Website: https://parks.ny.gov/parks/111/details.aspx for directions and trail map.

Thanks, Jim Slavin

Finding the right Parkinson’s support group

Many Parkinson’s fighters find support groups tremendously helpful in coping with the everyday realities of having the disease. While a support group doesn’t exactly replace the standard medical care, it can make an individual feel less isolated as he/she makes connections with others facing similar challenges.

Since such groups come in different formats (from large, formal meetings to smaller “living-room” get-togethers), it is okay to be confused and not know which one will benefit you the most. Worry not! Here, we have a step-by-step guide to finding a Parkinson’s support group that’s right and equally comfortable for you.

Read more


Book: Old Age: A Beginner’s Guide – by Michael Kinsley

Vanity Fair columnist Michael Kinsley escorts his fellow Boomers through the door marked “Exit.”

The notorious baby boomers—the largest age cohort in history—are approaching the end and starting to plan their final moves in the game of life. Now they are asking: What was that all about? Was it about acquiring things or changing the world? Was it about keeping all your marbles? Or is the only thing that counts after you’re gone the reputation you leave behind?

In this series of essays, Michael Kinsley uses his own battle with Parkinson’s disease to unearth answers to questions we are all at some time forced to confront. “Sometimes,” he writes, “I feel like a scout from my generation, sent out ahead to experience in my fifties what even the healthiest Boomers are going to experience in their sixties, seventies, or eighties.”

This surprisingly cheerful book is at once a fresh assessment of a generation and a frequently funny account of one man’s journey toward the finish line. “The least misfortune can do to make up for itself is to be interesting,” he writes. “Parkinson’s disease has fulfilled that obligation.”

More https://www.amazon.com/Old-Age-Beginners-Michael-Kinsley/dp/1101903767