Monthly Archives: April 2018


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

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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.

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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


April 21, 2018 – YOPD meeting

YOUNG ONSET PARKINSON’S DISEASE (YOPD) SUPPORT GROUP

DATE: SATURDAY, APRIL 21, 2018

TIME:   2:00 PM – 4:00 PM

LOCATION: GOOD SHEPHERD LUTHERAN CHURCH, 510 ALBANY-SHAKER ROAD,

                          LOUDONVILLE, NEW YORK

Join the YOPD Support Group Saturday, April 21, 2018, for the monthly meeting.

Program:   Donna Stressel, Program Director, of the Driver Rehabilitation Program, Sunnyview Hospital and Rehabilitation, will give a presentation on the program offered at Sunnyview.  There is networking and no admission charge.   Patients (any age) and caregivers are welcome to attend to learn more about Parkinson’s disease.

For further information regarding the YOPD, contact:  518-541-2021, after

3:00 p.m.

Next Meeting:  Monday, May 28, 2018, Route 7 Diner, 1090 Troy-Schenectady Road, Latham

Mission:  The YOPD support group shall welcome everyone with Parkinson’s disease including their care network.  YOPD will support, share, and encourage PD persons to enjoy quality of life and ensure they are not alone in their journey.  Information/issues obtained by YOPD from attendees will be treated confidentially and privacy respected.    


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