Monthly Archives: October 2018


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


February 14, 2019  meeting notice

Join the CDPSG Support Group for the monthly meeting.

February 14, 2019 7:00 PM at Beverwyck

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

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

Topic :

Tom Ford – Massage therapy


Speech and Swallowing Resources

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

Relevant Publications – Downloadable

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

 

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

 

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


“Speech and Language Therapy and Parkinson’s”

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

 

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

 

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

 


Relevant Online Information

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

 

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

 

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

 

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

 


Relevant Online Lectures and Webinars

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

 


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

 

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

 


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

 

 


Long sleeve t-shirt for sale

$20 per shirt with 100% of the proceeds going to support local PD activities!!!

To reserve one, come to a support group meeting or contact patrick klee pklee2210@yahoo.com

Styles:
long sleeve, navy shirt,
maroon short sleeve limited edition.  This unit will be Gildan 100% cotton or a 50-50 blend depending on availability (same brand as the dance t shirt and boxing shirts).

 


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

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

Read more

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