Monthly Archives: August 2017


U of Rochester offering PD care via telemedicine

DCNY is a research team sponsored by the University of Rochester and opened to all New Yorkers who have Parkinson’s Disease. PDCNY is offering 250 Parkies who qualify FREE PD care for the next 2 years. And, more importantly, the care will be delivered by a team of specialist, headed by a Movement Disorder Specialist.  A MDS is a Neurologist who took extra training to treat PD.  For the most part the care will be given in the patient’s home via the internet using Telemedicine.

See a flyer about the research here —> PDCNY Flyer Sep 1

Learn more and sign up at PDCNY.org. Or call 844-777-3269

 

Studies have shown that telemedicine care is just as good as care received at an academic medical center; in fact, many people have reported preferring telemedicine because they feel more at ease in the comfort of their own home.

Telemedicine is especially valuable to patients in remote, rural and underserved areas because it gives them the ability to consult specialists they’d otherwise have to travel hours to see.

http://www.parkinson.org/expert-care-research/telemedicine-virtual-care

 

Using web-based video conferencing to provide specialty care at home is feasible, provides patients value, and may offer similar clinical benefit to in-person care. Larger studies are needed to determine whether the clinical benefits are indeed comparable to in-person care and whether the results observed are generalizable.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3791511/


16 Tips to Increase Your Mobility Confidence While Living With Parkinson’s Disease

Parkinson’s disease affects movement, coordination and mobility and as the disease progresses, it can often begin to ebb away at the confidence a person living with the condition has in their own abilities. However, all is not lost and there are ways that you can improve your confidence in movement. Although it may seem counterintuitive, according to the National Parkinson Foundation, in order to increase your mobility confidence you need to move more.

Here are a few of their tips to help you move more:

  • Try to increase the amount of physical activity you do each day. Tackling chores around the house and garden is a good way to get moving.
  • Attend a local exercise class — yoga, swimming, water aerobics, abd boxing classes are all excellent choices.
  • Try to move around more — get up and walk around the house every hour or get up while the commercials are on while watching TV.
  • Dance. Play some of your favorite music and dance around the house.

If mobility and balance become an issue, mobility aids such as canes and walkers will help you to get around and get some of your independence back.

  • Laser canes and walkers can help those who suffer from gait freezing. The laser can help guide where to place your feet.
  • Straight canes with a rubber tip are best for stability.
  • Ensure the cane is at the correct height for maximum support and has a hand grip that’s comfortable.
  • Tripod or quad canes are more difficult for people living with Parkinson’s disease to use than single tip canes.
  • Walkers with four or more wheels will offer better stability and allow for easier turning.
  • Other features such as swivel casters, larger wheels and hand brakes will offer the best stability.
  • Walkers with added baskets or seats can prove very useful for resting and carrying items.
  • Walkers which need to be lifted into place do not offer stability for anyone with Parkinson’s disease and can make them lose balance.

If your Parkinson’s disease is more advanced and you require a wheelchair, there are some considerations you should take into account:

  • Speak with your occupational therapist or physical therapist about the best type of wheelchair to suit your needs
  • Check with your insurance company to see if a wheelchair will be covered.
  • Opt for a lighter wheelchair that will be easier to move around.
  • A wheelchair with a reclining back will allow you to rest easier and help if you have elevated blood pressure

read more https://parkinsonsnewstoday.com/2017/08/30/tips-increase-mobility-confidence-living-parkinsons-disease/


Algorithm Accurately Predicts Cognitive Decline in Parkinson’s Disease

Prediction of cognitive decline within 10 years of onset of Parkinson’s disease (PD) is now possible through an analytic model developed by a multinational collaborative of investigators. The algorithm provides a set of clinical-genetic scores that accurately predict future dementia or disabling cognitive impairment, according to results of a large-scale longitudinal analysis published in the Lancet Neurology.

Read more http://www.neurologyadvisor.com/movement-disorders/predicting-cognitive-decline-in-parkinsons-disease-with-algorithm/article/682935/


New App Helps People Living With Parkinson’s Manage the Disease

The National Parkinsons Foundation has created a new smartphone app called Parkinson’s Central that’s now available for people living with the condition and their caregivers to help with all aspects of managing Parkinson’s disease

According to the National Parkinsons Foundation, the free-to-download app has many features that people living with Parkinsons’s disease can use, including how to get more out of their doctors’ appointments; a tool to find local resources; a schedule for taking medications; tips for living well with the disease; information about surgery, medication and alternative treatments; insurance and financial information; and content aimed at caregivers.
The app is available for both Apple and Android devices from the Apple App store or Google Play.

Read more


Immune response linked to Parkinson’s disease

Researchers found that immune cells recognize and react to alpha-synuclein, the protein that builds up in the brains of people with Parkinson’s disease.These findings suggest that the immune system may play a role in the start or progression of Parkinson’s disease. 

Read more 


Two New Drugs Coming As Prevail Gets Started in NY

The Silverstein Foundation, a nonprofit organization formed by OrbiMed partner Jonathan Silverstein, announced the formation of a new startup in New York called Prevail Therapeutics. Headed by Columbia University neurology professor and Parkinson’s researcher Asa Abeliovich, the startup has launched to press forward with a gene therapy, and possibly other approaches, for a genetically-defined subset of people with the condition.Prevail has a deal in place with RegenXBio (NASDAQ: RGNX) to use a tool used in gene therapy that shuttles genetic instructions into the body to fix a disease-related malfunction. Prevail can now use the delivery tool, a type of engineered virus, to develop a gene therapy for Parkinson’s or other neurodegenerative diseases. The goal is to introduce a working copy of a gene that is mutated in people with a rare genetic form of Parkinson’s. The hope is that the new gene would alter the progression of the disease.
The startup is the first industry investment for the Silverstein Foundation, which formed earlier this year to fuel Parkinson’s research. CNBC reported Wednesday morning that Silverstein, a longtime life sciences investor at OrbiMed, started the foundation after being diagnosed with an aggressive form of Parkinson’s. According to its website, the foundation has given grants to the Michael J. Fox Foundation, the Parkinson’s Institute and Clinical Center in San Francisco, and Columbia University.
Abeliovich, whose research at Columbia has been focused on the genetics underlying Parkinson’s, worked with OrbiMed when he co-founded Alector, an OrbiMed-backed neurological drug developer in San Francisco (he’s currently that startup’s chief innovation officer). The OrbiMed connection led Abeliovich to join the Silverstein Foundation’s scientific advisory board, and eventually to discussions about forming new companies to combat the disease. The first is Prevail.
“He’s put together a real ‘SEAL team’ to try to figure out how we can advance things” against Parkinson’s, Abeliovich says of Silverstein.

For Parkinson’s, Two New Drugs Coming As Prevail Gets Started in NY


Caregiver Support Programs

Albany County
DEPARTMENT for AGING
162 Washington Avenue | Albany, NY 12210
Phone: (518) 447-7198

Caregiver support programs assist informal caregivers—spouses, adult children, other family members, friends and neighbors in their efforts to care for older persons who need help with everyday tasks.

The programs include services to assist the caregiver in their efforts through:

  • Information, Assistance and Referral
  • Counseling and Support Groups
  • Caregiver Training
  • Home Based Services*
  • Transportation*
  • Personal Emergency Response Systems*
  • Short term respite to relieve the caregiver through in-home care or social or medical day care or overnight care in a facility*

http://www.albanycounty.com/Government/Departments/DepartmentForAging/CaregiverSupportPrograms.aspx


Senior Services of Albany

Caregiver Support Services

Caregiver Connection

Helping a relative or friend with life’s daily tasks? Unsure what help is available? Want to be prepared for the next steps? We can help!

Caregiver Connection Telephone Support Group Project

Reaching isolated family caregivers not being served by in-person groups and evaluating the effectiveness of support groups conducted over the telephone.


Catholic Charities Senior & Caregiver Support Services

Catholic Charities began in Schenectady County more than 75 years ago. While the specific programs and services have changed, the commitment has not. Catholic Charities remains committed to offering people in need-our brothers and sisters-a respectful helping hand, a kind and caring word, and hope for tomorrow.

Catholic Charities Senior & Caregiver Support Services (CCSCSS) provides a range of programs and services to support quality of life for seniors – Caregiver Support Services, Dayhaven Social Adult Day Services, Health Insurance Information, Counseling & Assistance, Long Term Care Ombudsman, Nutrition Outreach and Education, Meal on Wheels, Senior Dining Centers – Friendship Cafés, and Transportation Services (Medical, Dayhaven, and Social).

http://www.ccseniorservices.org/index.php/caregiver-support-services-program


Albany Stratton VA Medical Center

Care for Caregivers

As a Caregiver, the very best thing you can do for those who depend on you is to take care of yourself. VA offers a number of services to support Family Caregivers. These services are available in and out of the home to help you care for the Veteran you love and for yourself.

Caregiver Support Line

Help is just a phone call away with VA’s Caregiver Support Line – 1-855-260-3274. Caring licensed professionals staffing the support line can connect you with VA services, a Caregiver Support Coordinator at your nearest VA medical center, or just listen if that’s what you need right now.

Caregivers can participate in monthly telephone education groups, where they can discuss self-care tips and ask questions on a variety of topics. Want to learn more about the monthly calls? Listen to a recording or view an educational handout.

Peer Support Mentoring

Caregivers of Veterans of all eras may participate in peer support mentoring, both as mentors and as mentees usually for 6 months. Mentors and Mentees communicate using email, telephone, and letter writing depending on what works best for both of them. Unable to commit to 6 months, one-time support is available through the Compassionate Connections Program.

Building Better Caregivers

Build the skill and confidence to care for your Veteran at home with the free, online workshop, Building Better Caregivers™. The program has been recognized for its ability to reduce caregiver stress and depression, and increase caregiver overall well-being.

Caring for Seriously injured Post-9/11 Veterans

The program for Comprehensive Assistance for Family Caregivers provides approved caregivers services such as a monthly stipend, travel expenses, health insurance, mental health services, and respite care.

REACH VA

Mentoring in the challenging areas of caregiving, stress management, mood management, and problem-solving is available through REACH VA . The program is available for Caregivers of Veterans diagnosed with: ALS, Dementia, MS, PTSD, or Spinal Cord Injury/Disorder.

Additional Support

Visit Tips & Tools for additional information on managing medicines, talking with your provider, caring for oneself, staying organized, and moving around safely.

Need Help?

Caregiver Support Coordinator
Your local Caregiver Support Coordinator is a licensed professional who can support you by matching you with services for which you are eligible, and providing you with valuable information about resources that can help you stay smart, strong and organized as you care for the Veteran you love. Enter your zip code to view contact information for your area.

Caregiver Support Line
With VA’s Caregiver Support Line – 1-855-260-3274 – assistance is just a quick phone call away. If you’re just getting started with VA, calling the Caregiver Support Line is a great first step to take to learn more about the support that’s available to you.


Kinship Caregivers 449-2001
Catholic Charities Caregivers
275 State St., Albany, NY 12202
Meets 1st and 3rd Tuesdays

http://www.townofbethlehem.org/DocumentCenter/View/2718


Support G

 

roup Services

Family Caregiver Support provides support groups for caretakers of the elderly and disabled or for seniors age 55 and up, caring for grandchildren. Albany FAMILY CAREGIVER SUPPORT ALBANY COUNTY DEPARTMENT FOR AGING
Caregiver Services Provides information, counseling, assistance, and support to caregivers at home or in the workplace. Also provides telephone support groups and educational programs to adult children and spousal caregivers of the elderly across the Capital Region. Caregiver Connection manages grant funds that can help caregivers pay for other services, such as Meals on Wheels, Social Adult Day Programs, and Personal Emergency Response Systems (PERS). Albany CAREGIVER CONNECTION SENIOR SERVICES OF ALBANY

http://www.hudson211.org/zf/taxonomy/detail/id/519912


 


Preventing falls and getting up safely from a fall

Most people with Parkinson’s disease fall and many have to live with recurrent falls.Research shows that the fear of falling increases the chance of falling greatly. Assessing the fear of falling by creating an intervention plan can help reduce recurrent falls. In this video, Chad Moir owner of Dopafit, shares some tips on gaining better balance. 

Read more http://mailchi.mp/925db4cce19f/balance-exercises-and-fall-prevention


Organizations that can be trusted for good information about PD

Here is a list of organizations that can be trusted for good information

  • National Parkinson’s Foundation helps patients actively enjoy life through expert care and treatment research.
  • American Parkinson’s Disease Association provides support, education, and research to help you live a fuller life.
  •  Michael J. Fox Foundation is helping to raise money for much-needed research to help find a cure. From ways you can get involved to a great blog chock-full of Parkinson’s-related information, there is so much information here
  •  Parkinson’s Disease Foundation provides information including news about the disease, information about upcoming events, insight into the latest research, and education about what to expect.
  • The Davis Phinney Foundation is committed to supporting programs as well as research that help to deliver inspiration, information and provide tools that will enable people living with Parkinson’s to have more control in managing their disease.
  • EVERY VICTORY COUNTS® Davis Phinney Foundation Essential Information and Inspiration for a Lifetime of Wellness with Parkinson’s Disease. A must read. http://www.cdparkinsons.org/wp-content/uploads/2016/08/DPF-EVC_2014-2.pdf
  • The Parkinson Alliance is the umbrella organization for the Parkinson’s Unity Walk that takes place every spring in New York City. They also sponsor Team Parkinson, a fundraising racing event. You can find current news and information on research projects on their site.
  • Partners in Parkinson’s has a program where you can be connected to an advocate who will listen, offer advice and support to patients and caregivers at no cost. This is just one of the services you can find through Partners in Parkinson’s.
  • Caring.com has a support group for caregivers, family and friends of those with Parkinson’s disease. No subject is off-limits in this forum.
  • The National Parkinson Foundation has a site specifically geared to caregivers. They help carers navigate the emotional, financial, and physical challenges they may face caring for someone with Parkinson’s
Research
Carepartners

Medical & Rehabiliation Care, Assistive Technology

General Care