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]


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 .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



February 20, 2019 – Caregiver 12-Week Telephone Support Group

Senior Services of Albany will be conducting a Caregiver 12-Week Telephone Support Group! The group will meet weekly by phone on Wednesdays, 7 p.m. – 8 p.m. from February 20, 2019 to May 8, 2019. This program is supported by the Albany County Department of Aging, the New York State Department of Aging and the Administration for Community Living. The telephone support group provides busy caregivers with the opportunity to participate by phone from the comfort of their homes. The weekly classes will provide support and strategies to:

  • Reduce stress, strain and depression 
  • Solve problems more efficiently 
  • Learn about community resource.

See flyer for more information. Advance registration is required. Either the caregiver or care receiver must reside in Albany County. 

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


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 :

To be determined


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


Dear Parkinson’s

Dear Parkinson’s,

December 12th will be the sixth anniversary of our official, diagnosed, life together, although we were getting to know each other years before that.  I feel that our relationship is progressing. I remember when we met among the nerve cells of the substantia nigra. By the time we were officially diagnosed, we had already lost 80 percent of our dopamine-producing cells.  If it’s all right with you, I would like to name the surviving dopamine cells to let them know that they are needed and loved and should stick around.

Do you think we should get an anniversary present for each other? Metal or wood is traditional for the sixth anniversary, but I can’t think of anything made of wood or metal that I would want.  I have an idea. We could get masquerade costumes. Parkinson’s has already given me a mask to go with the costume, due to decreased facial expression. There are some gifts you have given me that I would like to return; I don’t really need them.  Are there gift receipts for these things I got from you? I would like to box up and return muscle rigidity, stiffness in the arms, shoulders and neck, voice changes and unsteady walking. If you’re willing to take those back, I’m sure I could find a few more.

On the other hand, there are some other things you have given me that I love and wouldn’t mind more of:

Give me more flexibility in adjusting to change.  There are parts of my life I have no control over.  Every day poses unique challenges and I need to be able to quickly shift course.

Remind me, Parkinson’s, to have a positive attitude. Choosing to have a positive attitude impacts my relationships with others and how I take care of myself.

Keep teaching me compassion.  You may have changed my way of moving, working and living, but you also taught me to have compassion, empathy and appreciation for those affected by all types of illness.

And, Parkinson’s, let’s keep being open and unashamed about what you give me.  This openness has lead to wonderful friendships, and a most supportive community.

You can continue to give me the gift of gratitude. I believe that you have increased my gratitude for the simple things in life that are often taken for granted.

So Parkinson’s, like so many relationships, we have had good times and weathered some bad times.  May we continue in our journey together for many years to come.


Combatting depression

Mental health is extremely important in PD. Although common in other chronic diseases, research suggests that depression and anxiety are even more common in PD. It is estimated that at least 50 percent of those diagnosed with PD will experience some form of depression during their illness, and up to 40 percent will experience an anxiety disorder. 

The Parkinson’s Foundation Parkinson’s Outcomes Project found that taken together, mood, depression and anxiety have the greatest impact on health status, even more than the motor impairments commonly associated with the disease. 

Read more http://parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression


Thomas Allen 1940 – 2018

Tom and Patty Allen were active members of our group.

Thomas M. Allen, 77, of Rexford, died peacefully at home surrounded by his loving family on Sunday evening, November 25, 2018, after a 30-year battle with Parkinson’s Disease.  Tom was born in Tannersville, NY to Harold Allen and Suzanne Worth Speenburg.  

He is survived by his loving wife of 54 years, Patricia; sister Jeanne Allen, sons Thomas Allen (Mary Doherty); David Allen, Brian Allen; and three grandchildren, Morgan, Greta and Carter.  Tom was a devoted and beloved son, brother, husband, father, friend and mentor. He was an active member of the community throughout his life, and was a communicant of St. Mary’s Church in Crescent. He enjoyed coaching his sons’ baseball, football and basketball teams, gardening and dancing with his wife and he was an avid hunter and fisherman.

Tom graduated from Hunter-Tannersville High Schooland obtained degrees in Civil Engineering and Environmental Engineering from the University of Vermont and Rensselaer Polytechnic Institute.  Tom served as an Army Aviator in the 101st Airborne from where he served in many leadership positions before being Honorably Discharged as a 1st Lieutenant in 1966. Tom’s work as a professional engineer focused on improving water and air quality with the NYSDEC, where he served as Director for the Division of Air Resources from 1988-1995. He was instrumental in the development of the 1990 Clean Air Act Amendments. During this time Tom also served as the President of the State & Territorial Air Pollution Program Administrators (STAPPA) and led the efforts of Northeast States for Coordinated Air Use Management (NESCAUM).  Tom was awarded the Air & Waste Management Association’s S. Smith Griswold award in 1996, which is a national award given to an individual who has outstanding accomplishments in the prevention and control of air pollution. In retirement, Tom co-founded an environmental consulting business, Air Resources Group and for over a decade worked throughout the country as an instructor for the California Air Resources Board training new staff in air program activities. Tom loved music and dancing with his wife Patty, which they did at home and during their travels together across the country.

Calling hours will be held on Sunday, December 2nd, from 3 to 6 p.m. at the Catricala Funeral Home, 1597 Route 9 in Clifton Park, with a funeral service on Monday at 9:30 a.m. at St. Mary’s Church in Crescent. Burial will be in Saratoga National Cemetery following the funeral service at 11:30.

In lieu of flowers, donations may be made to The Michael J. Fox Foundation,
P.O. Box 5014, Hagerstown, MD 21741-5014, or to the Community Hospice of Saratoga, 179 Lawrence St., Saratoga Springs, NY 12866.


Parkinson’s Disease Vaccine Shows Preclinical Promise

from https://labiotech.eu/medical/united-neuroscience-parkinsons-vaccine/
The biotech company United Neuroscience has developed a candidate Parkinson’s disease vaccine that targets a protein linked to the condition.

The vaccine teaches the immune system to attack aggregations of alpha-synuclein. When this protein aggregates in neurons, it can lead to several neurodegenerative disorders, including Parkinson’s.

In United Neuroscience’s preclinical study, the vaccine was able to prevent the protein from aggregating in cell cultures, in mice and in post-mortem brain tissue of patients with Parkinson’s, Lewy body dementia and multiple system atrophy.

The company, headquartered in Dublin, has not specified when the vaccine might go to the clinic. As alpha-synuclein is involved in other diseases such as Lewy body dementia and multiple system atrophy, this vaccine could target several diseases in the clinic.

United Neuroscience has used the same platform to make a vaccine against Alzheimer’s disease, which is currently being tested in Phase II, with results expected at the end of this year.

There are companies that have Parkinson’s immunotherapies in the clinic already. Earlier this year, Affiris, an Austrian biotech, reported good safety results for its own alpha-synuclein vaccine in 24 patients in Phase I. Another Irish company, Prothena, in partnership with Roche, is running a Phase II trial with a different approach: injecting alpha-synuclein antibodies directly into patients.


Course:  Balanced Resilience for Family Care Partners – Every Wednesday • January 30th – March 20

Offered by Davis Phinney Foundation

Read more

What: This is an eight-week, live and online course you can attend from home. You will learn simple, evidence-based skills to make being a Parkinson’s care partner more sustainable so you can take better care of yourself and your person with Parkinson’s.When: Every Wednesday • January 30th – March 20
1-2:30 pm PST (4-5:30 pm EST)

Who: This is especially for Parkinson’s care partners

Cost: FREE

Instructor: Judy Long, outpatient palliative care chaplain at UCSF

Register: Enrollment is limited to 20 Parkinson’s care partners. If you want to secure your spot, please email us at blog@dpf.org.


Book: The Power of Habit: Why We Do What We Do in Life and Business – by Charles Duhigg,

If we want to reach a goal, we may need to develop or change habits.  This book will help us understand how to do that.

A young woman walks into a laboratory. Over the past two years, she has transformed almost every aspect of her life. She has quit smoking, run a marathon, and been promoted at work. The patterns inside her brain, neurologists discover, have fundamentally changed.

https://www.washingtonpost.com/news/inspired-life/wp/2015/03/02/expert-ten-super-smart-ways-to-build-good-habits-and-make-them-stick/

https://www.goodreads.com/book/show/12609433-the-power-of-habit

https://en.wikipedia.org/wiki/The_Power_of_Habit

 

 


Blocking Inflammasome-induced Neuroinflammation in Parkinson’s Disease with a Potent, Orally Available Small Molecule

Parkinson’s Disease Drug That Cools “Brains on Fire” Could Enter Human Trials in 2020

Study Rationale:
Our brains are full of immune cells called microglia, which fight infections and clear the brain of toxic products. In Parkinson’s disease, these cells are constantly active, leading to brain inflammation that damages neurons (nerve cells). Evidence of this inflammation is found in the blood and brains of Parkinson’s patients. To fight this damage, we developed small molecules (suitable to be be taken as a pill) that get into the brain, where they stopped brain inflammation in pre-clinical models of the disease. We hope this treatment could halt or even reverse Parkinson’s progression.

Hypothesis:
There are many different possible causes of Parkinson’s involving age, genetics, diets and lifestyle. Whatever the cause, we think our immune system’s response to produce inflammation in the brain is a key factor that drives Parkinson’s disease, and small molecule drugs that can penetrate the brain and stop this inflammation may be able restore the health of our brain immune cells, so they can get back to ‘cleaning up’ brain toxins.

Read more https://www.michaeljfox.org/foundation/grant-detail.php?grant_id=1521

https://www.sciencedaily.com/releases/2018/10/181031141520.htm

https://www.businesswire.com/news/home/20181031005717/en/Inflazome-Validation-New-Target-Parkinson%E2%80%99s-Disease

 

 


How Do I Know If I’m Doing the Right Exercise for Parkinson’s Disease?

Recent literature strongly suggests that exercise has a therapeutic benefit for people with Parkinson’s disease (PD). There is evidence of benefits from varied types of exercise such as Tai Chi, treadmill training, boxing, progressive resistance training and adapted tango. It can be confusing to understand which type of exercise is optimal for you and how often you need to be exercising.

Read more

https://www.michaeljfox.org/foundation/news-detail.php?how-do-know-if-doing-the-right-exercise-for-parkinson-disease

 


Ulster County Support Group – Kingston

Ready, Steady, Go!

 

Parkinson’s Disease Support Group in Kingston

Join others who are diagnosed with PD. Learn to cope with PD’s challenges in a fun, supportive, peer-led group that focuses on stress management through mindfulness, gentle movement, music, and humor.

 

This group will give participants an opportunity to:

  • Talk about the impact of PD on everyday life in a safe, respectful environment.
  • Learn from others and share useful written, community and on-line resources
  • Use methods such as deep breathing, mindfulness meditation, music and laughter to achieve improved mental health
  • Try gentle chair exercises to help with dexterity, flexibility, facial expression and vocal strength.

 

Important: Participation in occasional low stress exercise is optional. Those who choose to participate should only do so at a pace which is manageable and approved by the treating physician. 

 

Contact: Teresa Joseph (845)339-9090 ext. 2206

Location: MHA in Ulster, 300 Aaron Court, Kingston, NY

Time/Date: Thursdays 2:30pm-3:30pm, starting summer 2018

Group type: Open/Drop-in, Support

 


How to Talk So Your Doctor Will Listen

from

https://www.aarp.org/health/healthy-living/info-2016/talk-to-doctor-patient-relationship.html

Learn these tips before your next appointment
by Amy Paturel, AARP Bulletin, Jan./Feb. 2017 | Comments: 15

Be prepared for your next doctor’s visit with these helpful tips.

If you’ve ever felt like your doctor isn’t listening to you, it may be true. Studies have found that doctors let patients speak for only 23 seconds on average before cutting them off; in one University of South Carolina study, primary care patients were interrupted just 12 seconds after the physician entered the exam room.

When there’s less doctor-patient dialogue, patients are not only more likely to leave the office frustrated, but they’re also at greater risk of being misdiagnosed. Want to make up for the time crunch? Try these strategies to maximize your office visit and talk so your doctor will listen.

Make a human connection
Before you dive into your concerns, break the ice with a greeting or even a joke. “Doctors are people first, and we’re much more receptive when a patient begins a conversation with a simple, ‘How’s your day going?’ ” explains Katie Neuendorf, M.D., medical director for the Center of Excellence in Health Care Communication at the Cleveland Clinic.

Stay on message
Most doctor visits last 13 to 16 minutes, according to Medscape’s 2016 “Physician Compensation Report,” so after your greeting, get to the point. “Oversharing information unrelated to your medical concerns takes time away from tailoring a treatment plan,” Neuendorf says.

Tell the whole truth
You can’t expect a doctor to listen to your complaints, or adequately resolve them, if you’re not forthright. Tell your doctor about your fear of falling, substance abuse, sexual dysfunction or changes in sleep patterns.

Rehearse before you go
If you’re uncomfortable discussing embarrassing topics, write a script and rehearse it in front of a mirror. Use words like incontinent, bowel movements and diarrhea so that when you’re talking to the doctor, you’ll be more comfortable saying them aloud.

Don’t accept ‘it’s just aging’
If you have a symptom that has come on suddenly, keeps you up at night or interferes with your daily life, be specific about the changes you’ve noticed. “For example, you could say, ‘I’ve always been on time for appointments, but lately I’m forgetting them entirely. Is there a test you can do to rule out a more serious cognitive issue?’ ” says Mary Jane Minkin, M.D., clinical professor in the Department of Obstetrics, Gynecology and Reproductive Sciences at Yale Medical School.

Don’t save questions for the end
Once your doctor is halfway out the door, he or she is already thinking about the next patient. Instead, come with a list of concerns and address them within the first few minutes of your visit, Minkin suggests.

Explain what you can afford
Most doctors don’t have a clue about patients’ out-of-pocket costs. Some aren’t even sure which procedures, prescriptions and lab tests are covered by insurance or Medicare. “But that doesn’t mean they’re not willing to work with you to lower costs,” Neuendorf says. If you can’t afford a prescription, ask your doctor for an alternative, or ask him or her to help you prioritize your medications, so you know which ones you can skip and which ones are nonnegotiable.

Don’t go it alone
Bringing a loved one or family member to your medical visits can help ensure that the doctor listens to you and answers your questions. Your loved one can take notes, remind you about issues you wanted to discuss and help you remember doctors’ instructions after the visit is over.

Don’t be afraid to make a switch
If your doctor rushes through visits, doesn’t address your questions or fails to listen to you without interrupting, look for a new physician. “There’s no shame in finding someone who’s a better fit,” Grube says.


Schenectady County: support group

Schenectady County:
 Barby (Schenecady County) has stepped down as leader. She did a wonderful job but it is just to much for her at this time. There is no leader to replace her at this time.

Anyone who wishes to volunteer to re-start this group, please email eson dot jud at gmail dot com


FDA reviews two new Parkinson’s drugs to treat ‘OFF’ episodes

22 October 2018 – For many people with Parkinson’s, “off” episodes — when disabling symptoms come back before it is time for the next dose of oral levodopa — are among the most troubling aspects of the disease. Now, two entirely new drug formulations with potential to alleviate “off” episodes may have reached the home stretch of their long journey to market. The FDA is expected to rule on an inhaled powder formulation of levodopa (with delivery similar to an asthma inhaler) and an under-the-tongue “Listerine strip” formulation of apomorphine in January 2019.

read more

FDA Reviews Two New Parkinson’s Drugs to Treat ‘Off’ Episodes


Another Drug for Parkinson’s Gets Approval

March 08, 2018 – Recently, the U.S. Food and Drug Administration (FDA) approved a new drug for Parkinson’s symptoms called Osmolex ER (amantadine extended-release). Osmolex ER is the third amantadine-based medication for Parkinson’s disease (PD), and joins Symmetrel (immediate-release amantadine) and Gocovri (extended-release amantadine). Amantadine works on two brain chemical systems involved in PD: dopamine and glutamate.

More options can be better, but they also can be confusing. Here we talk about these drugs’ similarities and differences and why you might consider one over another.

read more

https://www.michaeljfox.org/foundation/news-detail.php?another-drug-for-parkinson-gets-approval


January 10, 2019 meeting notice

Join the CDPSG Support Group for the monthly meeting.

January 1o, 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 :

Susan C. Hare, MS, CCC-SLP from Albany ENT speaking about Speech – Swallowing – Voice –  Evaluations and Therapy

 


Albany Med recruiting for NILO-PD Study

A Phase II clinical trial to evaluate the safety and tolerability of nilotinib in Parkinson’s disease (PD) — NILO-PD — is under way at 25 sites across the United States. Researchers are looking to enroll 75 volunteers.

Nilotinib is a U.S. Food and Drug Administration (FDA)-approved treatment for cancer of the white blood cells. In a small Phase I trial, nilotinib showed potential benefit in PD. The nilotinib trial is one of many examples of repurposing, or repositioning, therapies for Parkinson’s. Repurposing is taking an existing medication approved by the FDA for one condition and using it to treat another; it can be a promising path to new PD therapies. But patients and clinicians are urged to wait for additional safety and efficacy data before adding nilotinib or any other repurposed drug to their regimen.

Here we answer a few key questions about the nilotinib trial.

What is the NILO-PD study?
The NILO-PD study will investigate the safety and tolerability of nilotinib in 75 people with Parkinson’s at 25 research institutions across the United States. Two-thirds of participants will receive nilotinib and the remaining will take placebo (an inactive pill) for comparison. Study involvement lasts approximately eight and a half months and includes 13 in-person visits.

What is nilotinib? Why do researchers believe it may slow or stop Parkinson’s?
Nilotinib is an FDA-approved drug to treat certain forms of white blood cell cancer. It is not approved to treat Parkinson’s disease. Nilotinib inhibits the activity of a protein, c-Abl, which is linked to pathways associated with PD, and preliminary data from a small Phase I clinical trial showed potential safety, tolerability and benefit in Parkinson’s. Watch a webinar on nilotinib.

Who is eligible to participate in NILO-PD?
Volunteers must meet certain criteria, including:

  • Age between 40 and 79,
  • PD diagnosis for more than five years, and
  • Stable PD medications, which include levodopa, for at least 30 days prior to enrollment.

Additional characteristics may qualify or exclude a participant as well. You can view all eligibility criteria on Fox Trial Finder.

How can people learn more about NILO-PD?
Visit Fox Trial Finder to read more about the study, eligibility criteria and recruiting sites. Or, contact your local site directly. (You can find phone numbers and emails on Fox Trial Finder.) You also can learn more on the study’s website: www.nilopd.org.

For more information, read the NILO-PD press release.

Site address:

Albany Medical College
47 New Scotland Avenue
Albany, NY  12208

If you are interested in participating or want to learn more about this study, please contact:
Sharon Evans, LPN 518-262-6682

 


Suggestions for Handwriting Changes

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

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

How can I make writing easier?

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


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

09:00 AM – 12:00 PM — …

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

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

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

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