Posts


Participate in a research study 

Parkinson’s Disease Study

The purpose of our current research is to identify molecules in the saliva, called microRNAs, which can serve as biomarkers for Parkinson’s Disease. We are hoping to identify specific microRNAs that are present in higher levels in the saliva of Parkinson’s patients compared to controls. By doing this, we may be able to diagnose this disease at an earlier stage and also improve our understanding of the disease.

Our study involves a single appointment, which lasts approximately 1 hour. During the appointment, we ask for a saliva sample and a medical history. We also perform a complete assessment with the Unified Parkinson’s Disease Rating Scale and detailed functional assessments to examine balance and motor function as well as cognitive and sensory function.  Subjects who participate in the study receive immediate feedback about their level of performance in the various test measures.  Additionally, all subjects receive $25 compensation.

More information on our study can be found at http://upstate.edu/parkinsonstudy.

We are also looking for healthy controls that match the ages of our Parkinson’s subjects. Often, the spouses of the Parkinson’s patients serve as great controls, and the appointments can be completed together.


About the Study
“Molecular and functional biomarkers of Parkinson’s disease” is being performed by Drs. Frank Middleton, Dragos Mihaila and Christopher Neville in the departments of Neuroscience & Physiology, Neurology, and Physical Medicine. The study is funded by Motion Intelligence, Inc. The purpose of this study is to help identify molecules in the saliva, called microRNAs, which can serve as biomarkers for Parkinson’s disease. By finding microRNA markers with higher levels in Parkinson’s patients, we may be able to diagnose this disease at an earlier stage and also improve our understanding of the disease.

Can I be in the study?
Any adult with a recent diagnosis of Parkinson’s disease will likely meet the criteria to participate in this study. Also, the healthy adults without the diagnosis of Parkinson’s can participate as controls.

What is involved in the study?
A doctor will ask each participant to perform a brief series of neurological tests, in addition to cognitive and balance tests. A small amount of saliva will then be collected in order to measure microRNA.

Will this study help me?
This study will not directly benefit you.  But, the results of this study may help us to understand some of the causes of Parkinson’s disease and help us to improve our diagnosis and services to those with Parkinson’s disease in the future.

What does it cost to participate in the study?
There are no costs to you for any of the tests involved in this study.  For your participation you will be reimbursed a small amount ($25).

Frequently Asked Questions
Thank you for being willing to consider participating in this research.  We are here to answer any questions you may have about the procedure as well as how your sample will be used.  If you have any questions that are not answered here, call 315-464-7729 or fill out the sign up form and we will contact you.

 


National HelpLine

Have you or a loved one been diagnosed with Parkinson’s disease? Are you adjusting to life several years into PD? Do you need help finding a physician or managing your medications? Ask the experts at PDF your questions.

Call (800) 457-6676 or email info@pdf.org

Our toll-free HelpLine/email service – staffed by a team of information specialists – can:
  • Answer your questions about Parkinson’s disease, symptoms, treatments, complementary and alternative therapies and the latest scientific studies reported by the media.
  • Help you to find support groups in your area and Parkinson’s specialists (movement disorder specialists) in your community, where available.
  • Identify financial, legal and other resources to help you live well with Parkinson’s.
  • Provide access to an interpreter for non-English speaking callers.

Each specialist provides a sympathetic voice and ear, with an understanding of the challenges you may be going through. If we can’t answer a question, we’ll find someone who can.  While this does not replace the relationship you have with your physician, we can help you prepare for your visits or provide advice when you cannot reach your team of healthcare professionals.

 

Begin finding answers today by:

  • Calling our toll-free helpline – (800) 457-6676 –  to speak directly with an information specialist.

More


Dance Through Parkinson’s Class

CLASSES MEET EVERY TUESDAY FROM 1:30 TO 3:00

at
Rudy A. Ciccotti Family Recreation Center

30 Aviation Road – Albany, 12205 – (518) 867-8920

Partners and caregivers welcome.

(more…)


September 14 – meeting agenda – Mary Piel will talk about (and do some of) LSVT BIG

September 14, 2017

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

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

Topic

Mary Piel will talk about (and do some of) LSVT BIG

She is an occupational therapist at Sunnyview Rehabilitation Hospital. She is certified in LSVT BIG which is a nationally recognized treatment for patient’s with Parkinson’s. Sunnyview has several therapist that are certified in LSVT BIG and they have also begun a Wellness Program for patient’s with Parkinson’s.

 


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


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
  • Parkinson’s Action Network, Advocacy group,
Research
Carepartners

Medical & Rehabiliation Care, Assistive Technology

General Care


How can I cope with stress?

It is not uncommon for the stresses of daily life — feeling overwhelmed, under prepared and over stimulated — to bring about anxiety and unrest. These psychological issues can be very important to your health, and even exacerbate the symptoms of Parkinson’s disease. That is why it is so important to take a good look at what may be causing stress in your life and learn how to deal with the situations that give rise to anxiety.

Reducing stressors in life is not always easy. You might need to take a closer look at your life to find what needs to change. Sometimes just reducing the negative influences in your life can make a big difference. Here is what I do to reduce stress and overcome anxiety — and what you can try, too.

Turn off the news.  Overexposure to events that are beyond your control can create tension and worry.

Eliminate violent and mindless TV and stressful video games. Use that time to engage in a hobby or something you enjoy.

Minimize exposure to negative people. Instead, connect with people who uplift you.

Learn some relaxation techniques. Meditation, yoga and deep breathing can help restore a sense of calm. Seek a yoga class tailored to Parkinson’s patients.

Seek solace in music. Try classical, soft rock, nature sounds or alternative. Set up a comfortable listening area where you can fully enjoy the moment.

Stay passionate. If Parkinson’s takes something you love away or care about, find a hobby to replace it. If you can no longer paint, pick up a camera and take pictures or learn to sing.

Stay open-minded and resilient. This will help you handle adversity.

Exercise away the anxiety. Talk to your doctor or physical therapist about setting up an exercise regimen that meets your health needs.

Socialize.  Nothing can empower you like a feeling of camaraderie. Get involved with a community organization, a support group, or a charity that you believe in.

Learn to laugh. Keeping a sense of humor is a sure way to beat anxiety. Watch a funny video and read something that makes you laugh every day.

Remember, anxiety and depression often go together. But the symptoms of anxiety can include: feelings of panic, fear and restlessness, sleep disturbance, poor concentration, palpitations, shortness of breath, irritability, and dizziness.

If you feel that you are totally overwhelmed by your feelings, consult with your physician. He or she can refer you to a mental health professional. There is no shame in seeking help, when you need it. Everyone deals with his or her anxiety differently.

Read more

http://www.parkinson.org/understanding-parkinsons/newly-diagnosed/coping-with-anxiety


Make a Donation

Hope Soars is a local organization that supports awareness, education and research about Parkinson’s

The organization started as Parkinson’s Albany and has expanded to become Hope Soars. Our goal has been to inspire the Parkinson’s community to live fully while battling this disease. Our efforts have brought about the Parkinson’s Garden of Hope, an annual 5K Run, Bike for PD and Community Walk. We host an annual Gala to raise funds for research.

We have  introduced Pedaling for Parkinson’s to the Capital District YMCA, Yoga for PD and Fighting Parkinson’s, a new boxing fitness program. We remain committed to finding a cure, and ways to live well while we hope.

Hope Soars does so much for the Albany Parkinson’s community,

Donate to Hope Soars using PayPal with the button below

 

OR

Donations can be mailed to
HOPE SOARS 1410 MAPLE HILL ROAD, CASTLETON NY 12033

Donate to Hope Soars using PayPal


How Vision Is Affected by Parkinson’s 

Many people living with Parkinson’s disease experience vision and eye problems. Some of the issues are a direct symptom of the disease, whereas others may be a side effect of medication taken to help treat Parkinson’s.
According to the National Parkinson’s Foundation, there are some common vision problems associated with Parkinson’s disease. Double vision can occur when the eyes begin to have trouble working in unison, which is referred to as convergence insufficiency. Some Parkinson’s disease medications can also produce the same effect. The problem can be rectified with either a change of medication or with special eyeglasses containing prisms. Many medications can also cause blurred vision for Parkinson’s patients and many will also suffer from dry eyes and decreased blinking.

Less commonly, people living with Parkinson’s may also experience involuntary closing of the eyes. This can happen for a number of reasons, many of which are not related to Parkinson’s at all, including nerve or muscle damage around the eye, inflammation of the eye, or damage to the eye. Parkinson’s patients are advised to see an ophthalmologist to determine the cause of the problem. There are medications that can help with the issue and if they don’t work, patients are advised to try botox. 

Read more

http://www.pdf.org/vision_parkinson

http://www.parkinson.org/Understanding-Parkinsons/Non-Motor-Symptoms/vision

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/eye-vision-issues/


Participate in upstate medical (Syracuse) study

We are currently recruiting participants for our study. We could try to coordinate a visit to Albany to conduct our study visits there, rather than have people drive out to Syracuse. We could plan a day (or a few!) to schedule interested participants and carry out the visits in a conference center that we can reserve. We could also speak briefly to support group members. 
Here is more information about our study:

The purpose of our current research is to identify molecules in the saliva, called microRNAs, which can serve as biomarkers for Parkinson’s Disease. We are hoping to identify specific microRNAs that are present in higher levels in the saliva of Parkinson’s patients compared to controls. By doing this, we may be able to diagnose this disease at an earlier stage and also improve our understanding of the disease.

 

More information on our study can be found at http://upstate.edu/parkinsonstudy. We are also looking for healthy controls that match the ages of our Parkinson’s subjects. Often, the spouses of the Parkinson’s patients serve as great controls, and the appointments can be completed together.

Our study involves a single appointment, which lasts approximately 1 hour. During the appointment, we ask for a saliva sample and a medical history. We also perform a complete assessment with the Unified Parkinson’s Disease Rating Scale and detailed functional assessments to examine balance and motor function as well as cognitive and sensory function. Subjects who participate in the study receive immediate feedback about their level of performance in the various test measures. Additionally, all subjects receive $25 compensation.  
More information on our study can be found at http://upstate.edu/parkinsonstudy. We are also looking for healthy controls that match the ages of our Parkinson’s subjects. Often, the spouses of the Parkinson’s patients serve as great controls, and the appointments can be completed together. 


Benefits of CBD on Neurological and Autoimmune Disorders

With a growing number of states legalizing cannabis, hemp is gaining popularity for its many benefits–and for good reason. Hemp is basically a cannabis plant but is grown to have almost none of the properties of a standard cannabis plant that get you “high”. Both cannabis and hemp contain cannabidiol or CBD, and studies are showing how CBD has several medicinal benefits. Unlike regular marijuana, medicinal hemp is grown to have under 0.03% THC and in most cases, there is no chance of getting high from its extracts. Marijuana can have up to 20% THC and when concentrated its extracts can have up to 99% THC.

Read more 


July 26, 2017 -Online Lecture to Address Sexuality in People with Parkinson’s and Other Chronic Ills

Tuppy Owens, a sex therapist who works and advocates on behalf of the disabled, will hold an online lecture on July 26 focusing on sexuality in the context of chronic conditions, including Parkinson’s disease, and how patients and caregivers can best enjoy this aspect of their lives.

Read more

https://parkinsonsnewstoday.com/2017/07/18/online-lecture-to-address-sexuality-intimacy-in-parkinsons-patients/


August 10, 2017 – meeting agenda

Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  No meetings in January and February.

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

Our topic will be Using Technology to Help Manage Parkinson’s
Presented by Jud Eson


A swell of research is showing how dance can benefit Parkinson’s sufferers

To dance is human; people of all ages and levels of motor ability express movements in response to music.

Professional dancers exert a great deal of creativity and energy toward developing their skills and different styles of dance.

How dancers move in beautiful and sometimes unexpected ways can delight, and the synchrony between dancers moving together can be entrancing.

To us as a neuroscientist and biomechanist (Lena), and a rehabilitation scientist and dancer (Madeleine), understanding the complexities of motor skill in a ballet move, or the physical language of coordination in partner dance, is an inspiring and daunting challenge.

Read more: http://www.dailymail.co.uk/health/article-4686924/TANGO-stave-effects-Parkinson-s-disease.html


First-ever Definitive Test for Parkinson’s Developed in Israel

The good news about Parkinson’s is that a scientist in Jerusalem has developed a test that detects the degenerative brain disease both definitively and earlier, hopefully improving the prognosis for patients.
The bad news is that the Mayo Clinic has noticed an association between Parkinson’s and melanoma, a deadly form of skin cancer. They can’t explain it, but a significant association has been found.

read more: http://www.haaretz.com/science-and-health/1.799726


Support Hope Soars – riding from Buffalo to Albany

Donate to Hope Soars using PayPal

Jud Eson is riding his bicycle 391 miles from Buffalo to Albany starting in Buffalo Sunday July 9 and arriving in Albany Sunday July 16.

He takes  a boxing class for people with Parkinson’s disease every Friday at Schotts Boxing.  The class keeps his mind and body in shape and he believes it is partly responsible for delaying the progression of his disease.

That class is sponsored by Hope Soars.  It funds Parkinson’s  awareness, education and research.

Hope Soars does so much for the Albany Parkinson’s community, Jud is dedicating his ride to that organization.

Will you donate 5 cents a mile? 10 cents? More?

Donations can be mailed to
HOPE SOARS 1410 MAPLE HILL ROAD, CASTLETON NY 12033

or you can
Donate to Hope Soars using PayPal

You can follow a running commentary of the ride through pictures and text on the ride site

https://judsbikelog.wordpress.com/


Clinical study for Adipose Stem Cells to Treat Parkinson’s Disease

The purpose of this study is to determine the impact that treatment with a cellular concentrate derived from an individual’s own fat, known as the stromal vascular fraction (SVF), has on the quality of life of people with Parkinson’s disease (PD). SVF contains components with “regenerative” properties, including stem cells that may be capable of ameliorating specific disease conditions. This study is designed to evaluate quality of life changes in individuals with PD for up to 12 months following SVF treatment.

 

You may be able to participate

Read more here


Study will lead to human trial of cancer drug to prevent Parkinson’s 

 Tiny doses of a drug used for leukemia has halted toxic brain proteins linked to Parkinson’s disease in a new Georgetown University Medical Center study using animal models.

The senior investigator of the study is planning a clinical trial in humans to study the effects of the drug, called nilotinib.
The study, recently published online in Human Molecular Genetics, provides a novel strategy in treating neurodegenerative diseases that feature abnormal buildup of such proteins involved in Parkinson’s, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others. 

“This drug, in very low doses, turns on the garbage disposal machinery inside neurons to clear toxic proteins from the cell,” says the study’s senior investigator, neuroscientist Charbel E-H Moussa. “By clearing intracellular proteins, the drug prevents their accumulation in pathological inclusions called Lewy bodies and/or tangles, and also prevents protein secretion into the extracellular space between neurons, so proteins do not form toxic clumps or plaques in the brain.”

Read more


Using Technology to Help Manage Parkinson’s

Announcements

  • sign in sheet
  • subscribe to our mailing  list
  • Upstate Medical study
  • future meetings
  • refreshment volunteers for September, October, November
  • Holiday party – date? time? location?
  • Meetings in January, February?

Topic outline

 


Where are my glasses?

https://smile.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=glasses+strap

ThinOptics – http://www.thinoptics.com Glasses + Universal Pod – Small enough to fit in your wallet, purse, pocket or even stick it to your phone!
^Top


Find missing items

You could have sworn you left your keys right there! When you misplace a crucial item that’s part of your daily life—like a set of keys—it’s often when you’re in a hurry. Combined with your iPhone, Tile can help you find your misplaced items, and potentially save a perfectly good day from turning sour. It’s one of the better lost-and-found device we’ve tested so far, but it does have some some drawbacks. You’ll need to replace your Tile every year due to its non-removable battery,

Tile https://www.thetileapp.com/en-us/how-it-works

^Top


Remember to take your medications

Many health conditions require patients take medications on daily basis. Missing a dose or taking more pills than prescribed could have detrimental effect on patient’s health, often putting them at risk.

Staying on top of your medications and taking them exactly as prescribed is crucial for their efficiency. But keeping the track of medications you need to take could be bothersome, especially if there’s more than one drug involved.

This is the reason why many people use different reminders that help them remember not only when to take it, but also when they need refill, or to track their drug use. Mobile apps for both Android and iPhone made this tracking a lot easier.

Round Health for iPhone

https://roundhealth.co/app/

https://itunes.apple.com/us/app/round-health-medicine-reminder-and-pill-tracker/id1059591124?mt=8

^Top


How to use our website

http://www.cdparkinsons.org

Home Page, Top menu, right sidebar, post categories, search, footer links

Subscribe to out mailing list – mail from our group will have a footer that you can use to control your subscription
unsubscribe from this list    update subscription preferences

^Top


Be careful about what you read and buy on-line

Some products and ideas seem like they may make daily living easier, but be careful what you believe. Anyone (including me) can make a website that looks official.

https://aarptek.aarp.org/online-safety/

How to recognize a scam

  • Money is Involved
  • If It Sounds Too Good to Be True…
  • Urgent! ACT NOW! Don’t Wait!
  • The Power of Fear
  • We Need Some of Your Personal Information

^Top


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

http://www.cdparkinsons.org/organizations-that-can-be-trusted-for-good-information-about-pd/ )

  • 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

^Top


About AmazonSmile

AmazonSmile is a website operated by Amazon with the same products, prices, and shopping features as Amazon.com. The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price of eligible products to the charitable organization of your choice.

Every item available for purchase on www.amazon.com is also available on AmazonSmile (smile.amazon.com) at the same price. You will see eligible products marked “Eligible for AmazonSmile donation” on their product detail pages.

For more information about the AmazonSmile program, go to http://smile.amazon.com/about.

^Top


A personal health journal should keep track of your overall health.

Some of the things you should include are:

  • Illness or injury
  • Hospitalizations
  • Surgeries
  • Allergies
  • “>Medicines, vitamins or supplements that you are taking and how often you take them
  • Diseases or illness in your immediate family
  • Emergency contacts
  • Doctor names, addresses, phone
  • Insurance information
  • Medical professional visit log

When you fill in your health history, be sure to include the dates. For example, if you were hospitalized, write down the date that you were admitted and the date you were discharged. You can also include notes on how you were feeling.

Google Keep – https://keep.google.com

Google Docs – https://docs.google.com

A blank journal on paper or https://www.amazon.com/Patients-Medical-Journal-Personal-Treatment/dp/1634502299

^Top


on-line support groups

My Pakinson’s Team https://www.myparkinsonsteam.com/

Patients like me https://www.patientslikeme.com/

^Top


Can’t get out to exercise?

Try following a dance class from home

http://capture.nbs-enb.ca/dwp/page/Home.aspx

or try an on-line exercise video

http://www.cdparkinsons.org/free-on-line-exercise-videos/

^Top


Products that makes getting dressed easier

The Wright Stuff offers a range of  products that makes getting dressed easier for anyone who has lost the use of one of their hands. The company has Dressing Sticks, one-handed belt, sock aids, they even one-handed nail clippers for people.

^Top


The Aware in Care kit

http://www.parkinson.org/find-help/aware-in-care-kit

The Aware in Care kit can be requested at www.awareincare.org or by calling 1-800-4PD-INFO (473-4636).The kit includes:

Hospital Action Plan
Read about how to prepare for your next hospital visit—whether it is planned or an emergency.

Parkinson’s Disease ID Bracelet
Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.

Medical Alert Card
Fill in your card with emergency contact information and place in your wallet.

Medication Form
Complete this form and keep copies in your kit for use at the hospital.

Parkinson’s Disease Fact Sheet
Share the facts about Parkinson’s with hospital staff and ask that a copy be placed in your chart.

I Have Parkinson’s Reminder Slips
Share vital information about Parkinson’s disease with every member of your care team in the hospital.

Magnet
Use this magnet to display a copy of your Medication Form in your hospital.

Get the Kit. Know the Facts. Be Aware in Care.®

^Top



Facebook group for us
https://www.facebook.com/groups/1908330349452040

^Top


August 19, 2017 – YOPD (Annual Picnic)

 

 

For further information regarding the YOPD, contact:

 

518-783-3492 OR 518-371-0448, after 3:00 p.m.

 

Meeting:  Saturday, August 19, 2017 (Annual Picnic)

Good Shepherd Lutheran Church, 510 Albany Shaker Road, Loudonville

More information to follow

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.    

 

 

 


LSVT BIG – what is it?

Recently principles of LSVT LOUD® were applied to limb movement in people with Parkinson disease (LSVT BIG®) and have been documented to be effective in the short term. Specifically, training increased amplitude of limb and body movement (Bigness) in people with Parkinson disease has documented improvements in amplitude (trunk rotation/gait) that generalized to improved speed (upper/lower limbs), balance, and quality of life. In addition, people were able to maintain these improvements when challenged with a dual task.

LSVT BIG can be delivered by a physical or occupational therapist. Treatment is administered in 16 sessions over a single month (four individual 60 minute sessions per week). This protocol was developed specifically to address the unique movement impairments for people with Parkinson disease. The protocol is both intensive and complex, with many repetitions of core movements that are used in daily living. This type of practice is necessary to optimize learning and carryover of your better movement into everyday life!

Start exercising NOW – as soon as possible. Physicians rarely refer their patients to health and fitness programs at diagnosis because medications are very effective early on at alleviating most of the symptoms, and patients experience little change in function. Yet, according to a recent survey it is at the time of diagnosis that patients often begin to consider lifestyle changes and seek education about conventional and complementary/alternative treatment options. Thus referrals to exercise, wellness programs and physical/occupational therapy would be best initiated at diagnosis, when it may have the most impact on quality of life.

Read more


Exercise Classes

Dance Through Parkinson’s – Classes are every Tuesday from 1:30 to 3:00 PM at Rudy A. Ciccotti Recreation Center, 30 Aviation Road, Albany, NY 12205, (518) 867-8920 – $5.00 per class***

P4P Pedaling for Parkinson’s – Saratoga YMCA no charge – Monday & Friday – phone (518) 583-9622

P4P – Duanesburg/Delanson YMCA – Monday’s and Thursday’s (518) 895-9500 member’s free, non-members $6.00.

P4P – Southern Saratoga (Clifton Park YMCA) – Monday, Wednesday, Friday- members free, non-members $5.00 – phone (518) 371-2139

PWR – Parkinson’s Wellness Recovery Class Thursdays 10:30 – 11:45 Cost $45 for 7 weeks – Clifton Park YMCA – 1 Wall Street, Clifton Park, NY 12065 – Phone (518) 371-2139 Contact the Y for more information

P4P – Glenville YMCA – Monday, Tuesday, Thursday– Members free, non-members $5.00—phone (518) 399-8118

Neuromotor Wellness – Glenville YMCA – Monday’s 12 noon – 1:15 PM.

P4P – Troy YMCA – Monday, Wednesday, Friday – Members free, non-members $5.00– (518) 272-5900

P4P – Guilderland YMCA – Monday, Wednesday, Friday – Member’s Free, non-members $5.00-Contact Chris Wilson – (518) 456-3634 ext 1140 for more information

P4P– Bethlehem YMCA – Monday, Wednesday, Friday, Parkinson’s Wellness Class Thursdays 12 N -1:45 Cost $45 for 7 weeks –– Phone (518) 439-4394 Contact the Y for more information

Schott’s Boxing, 21 Vatrano Road, Albany, NY 12205 (518) 641-9064- Friday’s 10:00 AM -The cost is $10.00 for the initial visit which covers the cost of the hand wraps.  If you have any questions, please contact Mark Burek (518) 428-0056.

Rock Steady Boxing Oswego, 209 Oswego Street #12, Liverpool, NY. Classes are Tuesday, Thursday and Saturday.   Contact Jeannette Riley (315) 622-2332 for assessment appointment and more information. Check Website CNY.rsbaffiliate.com for class information.

Rock Steady Boxing Syracuse at the Centers at St. Camilus, 813 Fay Road, Syracuse, NY 13219, Classes are Tuesdays and Thursdays from 11:45 – 1:15. Call for information, (315) 488-2112

Yoga Class- Thursday Honest Weight Coop, 100 Watervliet Avenue, Albany, NY, Free for Parkinson’s Patients and their family/caregivers, for information call Instructor Tamara Cookingham (518) 495-3239 tamaracookingham@gmail.com

Free on-line exercise videos

Always consult your physician before beginning any exercise program. This general information is not intended to diagnose any medical condition or to replace your healthcare professional. Consult with your healthcare professional to design an appropriate exercise prescription. If you experience any pain or difficulty with these exercises, stop and consult your healthcare provider..


Parkinson’s Could Enhance Creativity

People with Parkinson’s disease may have higher levels of creativity than their healthy peers, a new study finds.

Researchers compared the creativity levels of 27 Parkinson’s patients with 27 healthy people of the same education level and age. Participants were asked to interpret abstract pictures, answer questions aimed at provoking imagination (such as, “What can you do with sandals?”) and explain imaginative metaphors such as a “scarf of fog.”

https://www.livescience.com/46925-parkinsons-enhance-creativity.html

Robin Morgan, who was diagnosed with Parkinson’s several years ago, read four “quietly powerful poems — meditating on age, loss and the simple power of noticing” at a recent TED talk.

 

http://onlinelibrary.wiley.com/doi/10.1002/ana.24181/abstract

 


Researchers Test Noninvasive Form of Deep Brain Stimulation on Mice

Researchers developed a method for noninvasive deep brain stimulation (DBS) that showed promise as a potential way to stimulate neurons without requiring surgery, a new study says.

The method works by inducing electrical currents with different high frequencies. When these currents meet deep in the brain, they generate enough stimulation to activate neuronal activity.

The study, “Noninvasive Deep Brain Stimulation via Temporally Interfering Electric Fields,” was published in the journal Cell.
Read more

https://parkinsonsnewstoday.com/2017/06/23/nonsurgical-deep-brain-stimulation-technique-parkinsons/


Building a Healthier You – Neuromotor Wellness – Class at the Glenville YMCA

The class will address muscle issues and, like the  “People with Parkinson’s” and  “Parkinson’s Wellness Recovery” classes, it will also work with balance, speech, manual dexterity, etc. It is open open to anyone with muscular degeneration challenges: Parkinson’s, MS, ALS, stroke recovery, muscle injury. 
Participants should be able to walk and stand unassisted. Participants must have a waiver and medical clearance. The cost will be $45 for Y members, $56 for Community members; free to caretakers.
For more information, you can call the Glenville YMCA, 399 – 8118,  127 Droms Rd, Glenville.

The class will be held on Mondays, from noon to 1:15.

The class will run through the summer of 2017

Please Note: There are still PWP and/or PWR classes going on at other YMCA’s.

  • Southern Saratoga County Y (Clifton Park) holds their class on Thursdays from 10:30 –  11:45.
  • Bethlehem Y is on Thursdays from noon – 1:15.
  • Troy Y’s class is held on Tuesdays from 10:30 – 11:45 – however, I did hear that they might suspend the class for the summer and start up again in the fall.
  • Troy’s class is taught by Sondra who actually works in the East Greenbush Y, so I assume East Greenbush also has a PWP class, but I don’t know when it is given or if it will be suspended for the summer either.
  • Other Y’s  may also give these classes, but I don’t have specific information, so if you are interested, please contact the Y nearest you and inquire! If they don’t have one, and enough people request it, they may have someone trained and start one! 

Is Parkinson’s an Autoimmune Disease?

The cause of neuronal death in Parkinson’s disease is still unknown, but a new study proposes that neurons may be mistaken for foreign invaders and killed by the person’s own immune system, similar to the way autoimmune diseases like type I diabetes, celiac disease, and multiple sclerosis attack the body’s cells. The study was published April 16, 2014, in Nature Communications.

“This is a new, and likely controversial, idea in Parkinson’s disease; but if true, it could lead to new ways to prevent neuronal death in Parkinson’s that resemble treatments for autoimmune diseases,” said the study’s senior author, David Sulzer, PhD, professor of neurobiology in the departments of psychiatry, neurology, and pharmacology at Columbia University College of Physicians & Surgeons.

Read more


Wednesday, June 21, 2017 – Live from Brooklyn: Dance for PD

For those who haven’t tried the local Dance for PD class which is held weekly at the Ciccotti center off Wolf Rd, this will give you a taste of what the class is like.

Here is information about our local class. – CLASSES MEET EVERY TUESDAY FROM 1:30 TO 3:00 (no class on July 4th) at Rudy A. Ciccotti Family Recreation Center – 30 Aviation Road – Albany, 12205 – (518) 867-8920

Live from Brooklyn:

Dance for PD

Wednesday, June 21

2:15-3:30 PM (US Eastern Time)

Join us as we continue our season of live-streamed Dance for PD® classes from the Mark Morris Dance Center in Brooklyn, NY.

No registration required—just click below at the scheduled time.

Class taught by John Heginbotham | Music by William Wade

Can’t make it? Click here to enjoy archived classes.


On-line resources

FOUNDATIONS
Parkinson’s
Research
Carepartners

Medical & Rehabiliation Care, Assistive Technology

General Care


Exercise resources

It is recommended that you exercise within 55 to 85 percent of your maximum heart rate for at least 20 to 30 minutes to get the best results from aerobic exercise. The MHR (roughly calculated as 220 minus your age) is the upper limit of what your cardiovascular system can handle during physical activity.

Target Heart Rate Calculator | ACTIVE


Borg Rating of Perceived Exertion Scale

One way to see how much progress you’re making in your physical activity is to measure the amount of effort it takes to do an activity. Over time, the amount of effort it takes should decrease. Once you’ve reached this point, you can gradually move on to more challenging activities.

The Borg Rating of Perceived Exertion (RPE) scale will help you estimate how hard you’re working (your activity intensity). Perceived exertion is how hard you think your body is exercising. Ratings on this scale are related to heart rate (how hard your heart is working to move blood through your body).

How to Use the Scale

  • While you’re doing an activity, think about your overall feelings of physical stress, effort and fatigue. Don’t concern yourself with any single thing, like leg pain or shortness of breath. Try to concentrate on your total, inner feeling of exertion.
  • Find the best description of your level of effort from the examples on the right side of the table.
  • Find the number rating that matches that description. Add a zero to the end of the number rating to get an estimate of your heart rate during activity (also known as training or target heart rate).
  • Typically, RPE ratings for activity in the target heart rate zone will be between 12 and 16. The shaded areas are the moderate activity zones.
  • If your RPE for an activity decreases over time, you’ve improved your fitness level. Congratulations!

Borg Rating of Perceived Exertion (RPE) Scale

Number Rating Verbal Rating Example
6 No effort at all. Sitting and doing nothing.
7 Very, very light Your effort is just noticeable.
8
9 Very light Walking slowly at your own pace.
10 Light effort.
11 Fairly light Still feels like you have enough energy to continue exercising.
12
13 Somewhat hard
14 Strong effort needed.
15 Hard
16 Very strong effort needed.
17 Very hard You can still go on but you really have to push yourself. It feels very heavy and you’re very tired.
18
19 Very, very hard For most people, this is the most strenuous exercise they have ever done. Almost maximal effort.
20 Absolute maximal effort (highest possible). Exhaustion.

Stem Cells and Parkinson’s

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

What are stem cells?

Stem cells are a renewable source of tissue that can be coaxed to become different cell types of the body. The best-known examples are the embryonic stem (ES) cells found within an early-stage embryo. These cells can generate all the major cell types of the body (they are “pluripotent”). Stem cells have also been isolated from various other tissues, including bone marrow, muscle, heart, gut and even the brain. These “adult” stem cells help with maintenance and repair by becoming specialized cells types of the tissue or organ where they originate. For example, special stem cells in the bone marrow give rise to all the various types of blood cells (similar blood cell-forming stem cells have also been isolated from umbilical cord blood).

read more


Stem cell technique morphs brain cells to cure Parkinson’s in mice

Are Stem Cell-Based Therapies for Parkinson’s Disease Ready … – NCBI

Brain Cell Transplants Are Being Tested Once Again For Parkinson’s – NPR


June 23, 2017 – Boxing class

A non-contact boxing fitness class designed for people with Parkinson’s and their caregivers.

The class is taught on Fridays at 10.

Read more here


June 28, 2017 – Schenectady County Support Group

Schenectady County:
Monthly, 4th Wednesday 2:00 – 4:00 PM, November and December 3rd Wednesday 2:00 – 4:00 PM
Congregation Agudat Achim, 2117 Union Street, Schenectady, NY 12309
Contact: Barby Harris (518) 346-5779 Home (518) 522-6245 Cell
barbyandstan2116@gmail.com

 

Schenectady County Meeting: June 28th at 2 PM. Kyle J. Guay, PharmD, Clinical Pharmacist, from Capital Care would appreciate having questions before the meeting so he can come with answers to our questions. Send them to Barbie at barbyandstan2116@gmail.com 

***Please note the meeting location has changed to Congregation Agudat Achim, 2117 Union Street, Schenectady, NY 12309


June 15, 2017 – Challenges and Treatment of Young-Onset Parkinson’s – on-line seminar 

Challenges and Treatment of Young-Onset Parkinson’s Disease

People diagnosed with Parkinson’s disease before age 50 (young-onset PD) face unique challenges around work and family and may take different approaches to treatment. Our patient and clinician panelists will discuss the experience of and care for YOPD.

Title: Challenges and Treatment of Young-Onset Parkinson’s Disease

Date: June 15, 2017

Time: 12:00 PM Eastern Time

Duration: 1 hour

Thursday, June 15, 12 to 1 p.m. ET

Register here


Ride with Larry – Medical Marijuana video – a must watch

Larry doesn’t just live with Parkinson’s. He rises above it. After a 20-year battle with Parkinson’s, Larry has exhausted every conventional method of treatment, every drug, and even brain surgery. Refusing to give up, he seeks alternatives, discovering the untapped benefits of exercise and medical marijuana. Now Larry will attempt the unthinkable, a 300-mile bike ride across South Dakota, a journey of hope for anyone facing a life altering illness. In this intimate portrait of courage, love, and community, Larry Smith refuses to give up, proving that if you love life, you’ll fight for it.

 

Video showing the effect of medical marijuana on Larry


July 24, 2017 – YOPD Dinner

MEETING

YOUNG ONSET PARKINSON’S DISEASE (YOPD) SUPPORT GROUP

DATE: MONDAY, JULY 24, 2017

TIME:    7:00 PM

LOCATION: ROUTE SEVEN DINER, 1090 TROY SCHENECTADY ROAD   

                          LATHAM, NEW YORK (Handicapped Accessible; Ample Parking)

 

Join the YOPD Support Group July 24, 2017 for the monthly meeting.

 

Dinner is ordered off the menu (individual bills).  Reservations are not required.  Patients (any age) and caregivers are welcome to attend to learn more about Parkinson’s disease in an informal setting.   

 

For further information regarding the YOPD, contact:

 

518-783-3492 OR 518-371-0448, after 3:00 p.m.

 

Next Meeting:  Saturday, August 19, 2017 (Annual Picnic)

Good Shepherd Lutheran Church, 510 Albany Shaker Road, Loudonville

 

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.    

 


Lifespan in Parkinson’s Nearly Identical to General Population

A new study finds that, overall, lifespan for those living with Parkinson’s disease (PD) is nearly identical to those in the general population. The study looked at a group of diseases called synucleinopathies, including Parkinson’s. The results appear in the May 15 online edition of JAMA Neurology.

Overall, the study reminds us that people with Parkinson’s can live many years with the disease. With that in mind, people living with these diseases, their care partners and their families can take steps to plan for their health care and make important financial decisions.

Read more here


August 4, 2017 – Hope Soars day at the races

Fri, August 4, 12pm – 6pm
Where

Saratoga Race Course, 267 Union Ave, Saratoga Springs, NY 12866

267 Union Ave, Saratoga Springs, NY 12866

https://goo.gl/maps/mKGi5qnw2kF2

Description

We will have a community event booth near the picnic area to raise awareness for Parkinson’s research and local Parkinson’s programs.


Young Onset PD (YOPD) Support Group Meeting information

Starting in May and every other month meetings will be the fourth Monday.

Time: 7:00 PM
Location: Route 7 Diner, 1090 Troy Schenectady Road (across from Keeler Motors), Latham

Diner dates are:

• Monday, May 22
• Monday, July 24
• Monday, September 25
• Monday, November 27

➢ Meetings for June, August, October, and December will be the third Saturday of the month.
Time: 2:00 PM
Location: Good Shepherd Lutheran Church

Dates are:

• Saturday, June 17
• Saturday, August 19
• Saturday, October 21
• Saturday, December 16


12 Types of Exercise Suitable for Parkinson’s Disease Patients

If you have Parkinson’s disease, there are a lot of health benefits that come along with exercise. Staying active can help you sleep, strengthen your muscles and joints, reduce stress and depression, and improve posture, balance, and gait.

But what sort of exercise should you do? The types of exercise you choose will depend, to some degree, on the severity of your Parkinson’s disease and your overall health. According to the Parkinson’s Disease Clinic and Research Center at the University of California, the exercises should be varied and incorporate changing directions through unplanned movement, cardiovascular exercise, balance, strength training and rhythmical exercises.

How does Parkinson’s disease affect the brain?

Unplanned and Random Movement
The exercises listed require the person to change tempo and direction regularly. These will challenge a person mentally as well as physically as they require concentration to perform.

  • Walking, hiking or jogging
  • Racket sports such as badminton, table tennis, squash
  • Yoga or Tai Chi
  • Outdoor cycling
  • Dancing
  • Aerobic classes
  • Marching with swinging arms
  • Swimming in different strokes

Planned and Repeated Movement
These exercises are generally repeated movements that require balance. They can be performed while doing something that challenges a person mentally, such as watching a quiz show or the news, throwing and catching balls, singing, or problem-solving.

  • Cycling on a static bike
  • Weightlifting using light weights
  • Swimming laps in the same stroke
  • Slow walking on a treadmill

Read more 


‘Miracle nun’ says Pope John Paul II healed her from Parkinson’s disease

She couldn’t believe her eyes.

There, on the paper before her, she had written Pope John Paul II’s name in handwriting clear enough to read.

“The pen skipped across the page,” Sister Marie Simon-Pierre would tell Vatican investigators later.

Until that moment, the French nun, then 43, had been so racked by Parkinson’s she could barely hold a pen, let alone write.

Unable to process what appeared to be happening, the nun retired to her bed and woke up at 4:30 a.m. to another revelation — she had slept through the night for the first time in months.

“I got up fully alive,” she said.

Read more

 

John Paul II “Miracle” Further Scrutinized

The Vatican this week marks the fifth anniversary of Pope John Paul II’s death amid some doubts that the miracle needed for his saint-making cause will stand up to scrutiny and questions about his record combating pedophile priests.

Read more

 

Nun ill again after cure by Pope John Paul

VATICAN CITY, March 5 (UPI) — A French nun’s return to illness could delay the canonization of Pope John Paul II.

Pope Benedict XVI put his predecessor on the fast track for sainthood almost immediately, and there had been speculation John Paul would be beatified on Oct. 16, the anniversary of his election to the papacy, the Guardian reports. The Vatican has now scheduled the canonization of six saints on Oct. 17, which would bar a beatification the day before.

To become a saint requires evidence of posthumous miracles. Sister Marie Simon-Pierre said three years ago she had been relieved of the symptoms of Parkinson’s disease after praying to John Paul, who also suffered from Parkinson’s.

Now, a Polish newspaper, Rzeczpospolita, reports Simon-Pierre’s symptoms have returned. The newspaper also said her doctor, on his Web site, suggested she did not suffer from Parkinson’s but from a disease with the same symptoms that is known to go into remission.

read more


10 Secrets to a Happier Life :: book

Internationally renowned as both a neurologist and a leading researcher, Dr. Okun has been referred to as, “the voice of the Parkinson’s disease patient.” He has an international following on the National Parkinson Foundation’s Ask the Doctor web-forum. His many books and internet blog posts are brimming with up-to date and extremely practical information. He has a talent for infusing his readers with positivity and optimism. In his current book, he unmasks the important secrets applicable to every Parkinson’s disease patient. For some sufferers the secrets have translated into walking again, for others they have restored voices, and for many they have resulted in the lifting of a d

Read more https://www.amazon.com/Parkinsons-Treatment-Secrets-Happier-English/dp/1481854992/

 

 


‘Hunger Hormone’ Could Help Treat Parkinson’s Disease

New evidence suggests being hungry isn’t a bad thing, at least for your brain.

When the “hunger hormone” ghrelin was first discovered in 1996, scientists were excited about its future application the treatment of eating disorders. Years of research revealed that the hormone, which is produced in an empty stomach, stimulates appetite and regulates the distribution and rate of use of energy.

But now, at Swansea University in the United Kingdom, Jeffery Davis and his team added ghrelin to lab-grown mouse brain cells and found that it activated neurogenesis—the process by which neurons divide and multiply. This work could revolutionize how we treat neurodegenerative conditions like Parkinson’s disease.

Scientists have discovered that ghrelin, known as the “hunger hormone,” activates the process by which cells divide and multiply—offering a possible treatment for Parkinson’s disease.

Parkinson’s disease is a long-term disorder of the central nervous system that primarily affects the motor system. Scientists don’t know the cause of the disease, but it’s believed to be a result of a loss of type of brain cell. But some research, even some conducted by Davis, suggests ghrelin could play a part in treating it. Here’s Clare Wilson, writing for New Scientist:

In further experiments, Davies’s team found that ghrelin protects brain cells in a dish from dying when they are encouraged to mimic Parkinson’s disease. And Davies’s colleague Amanda Hornsby found that, in a study of 28 volunteers, people with Parkinson’s dementia—cognitive impairment caused by Parkinson’s disease—have lower levels of ghrelin in their blood than people who don’t have the condition.

This indicates that in the future, ghrelin could be used to treat Parkinson’s dementia. From an evolutionary perspective, the link between ghrelin and mental ability makes sense. If an animal is hungry, it needs extra brainpower to find that vital next meal. Previous studies on mice showed that a reduced-calorie diet helped boost the number of neural connections in their brain and they performed better on learning and memory tests.

Read more


Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind and Spirit

An essential addition to your wellness toolkit. Dealing and Healing offers a fresh and exciting new tool for any individual or group seeking an holistic approach to their own wellbeing. Angela and Karl Robb, the team that developed the Parkinson’s Disease best selling book, A Soft Voice in a Noisy World, have created an easy to use workbook to enhance personal wellness. Dealing and Healing is a new workbook that explores living well with a health condition from a body, mind, and spirit level. Filled with exercises designed to expand self-awareness, refresh the body, calm the mind, and bring peace to the spirit. Now, having lived with Parkinson’s for at least thirty-three years,


Parkinson’s Disease: 300 Tips for Making Life Easier

Parkinson’s Disease: 300 Tips for Making Life Easier

 

Being diagnosed with Parkinson’s disease can be distressing, and adjusting to the effects of the disease can be difficult. The second edition of Parkinson’s Disease: 300 Tips for Making Life Easier will help readers lead a remarkably unlimited life. Filled with tips, techniques, and shortcuts readers will learn basic lessons for conserving time and energy, enabling them to do more of the things they want to do. Throughout the book, specially marked tips are provided for those who provide care and support for people with this disease. By adapting their routine,

 


Medical Marijuana and Parkinson’s

The Facts

The American Medical Association stated in a 2007 online report, “Medical Marijuana (A-01)”:

Only limited data exist on the effects of marijuana in patients with Tourette’s syndrome who respond inadequately to standard treatment, consisting of 4 case histories that report beneficial effects of smoked marijuana and 1 who reported substantial benefit from oral 9-THC.

The Institute of Medicine published in its March 1999 report titled, “Marijuana and Medicine: Assessing the Science Base”:

It is important to note that stress and anxiety tend to worsen the symptoms of movement disorders. Thus, marijuana’s calming effect could be a primary reason why some patients claim that it brings them relief.

Movement Disorders stated in a Sep. 2004 article titled, “Survey on Cannabis Use in Parkinson’s 
Disease” by researchers from the Movement Disorders Centre at the Department of Neurology at Charles University, Prague, Czech Republic:

An anonymous questionnaire sent to all patients attending the Prague Movement Disorder Centre revealed that 25% of 339 respondents had taken cannabis and 45.9% of these described some form of benefit. …The late onset of cannabis action is noteworthy. Because most patients reported that improvement occurred approximately two months after the first use of cannabis, it is very unlikely that it could be attributed to a placebo reaction.

Desired Strains Effects and Administration Methods

Patients suffering from movement disorders should consider the indica cannabis strains with high CBD low THC that provide following palliative effects:

  • Anxiety relief
  • Muscle inhibitor

Always seek the advice of your physician or other qualified healthcare provider before starting any 
new treatment or discontinuing an existing treatment with medicinal cannabis. Talk with your healthcare provider about any

For your physician

Only physicians, nurse practitioners and physician’s assistants are allowed to recommend medical marijuana.

Recommending physicians must:

  • Be licensed and practicing in New York
  • Be qualified to treat the serious condition
  • Have complete the New York Department of Health-approved training course
  • Have registered with the DOH
  • Must be caring for the patients for whom they are making recommendations for, meaning that they have done a full assessment of the patients’ medical histories, current medical conditions and believe that the patient will benefit from the use of medical marijuana.
  • Must consult the prescription drug monitoring program and review the patient’s control substances history before issuing a recommendation

should not be used as a substitute for the care and knowledge that your physician can provide.

How to use

Start Low and Go Slow

The basic principal for dosing medical marijuana is to start with a low dose and to go slow in taking more until the effect of the first dose is fully realized, because the effects of cannabis are not always immediately felt. Starting low and going slow allows patients to accommodate for the different experiences they may have.

Cannabis has a wide margin of safety and there is limited risk of overdose. However, caution is warranted until a patient fully understands the effect that the cannabis may have. Dosage varies greatly among patients, even when treating the same condition.

There are many factors that impact the effect, including:

  • Amount used (dosage)
  • Strain used and method of consumption
  • Environment/setting
  • Experience and history of cannabis use
  • Biochemistry
  • Mindset or mood
  • Nutrition or diet

Administration

All allowable forms of medical marijuana, including methods of consumption and strain, variety, and strength, are determined by the Commissioner and must be approved by the Commissioner before they can be sold. Smoking as a method of consumption of the only form not left to the Commissioner and specifically excluded from ‘certified medical use’ in the statute.

Inhalation Methods:

  • Battery-powered handheld vaporizer
  • Disposable handheld vaporizer with replacement cartridge options
  • Electric vaporizing device
  • Metered-dose inhalers (MDI)

Oral Forms:

  • Capsules/tablets
  • Oils
  • Tinctures
  • Oromucosal sprays

Effects of Medical Marijuana

Short-Term Cognitive Effects

Patients should be aware that cannabis use causes short-term impairments in the following brain functions:

  • Memory
  • Sense of time
  • Sensory perception
  • Attention span
  • Problem solving
  • Verbal fluency
  • Reaction time
  • Psychomotor control

Cannabis users may “pull themselves together” to concentrate on simple tasks for brief periods of time. That said, performance impairments may be observed for at least one to two hours following cannabis use, and residual effects have been reported up to 24 hours depending on potency of the cannabis, the method of administration, and the tolerance of the user.

Long-Term Cognitive Effects

Consult the advice of your physician if you are a long-term user of medical cannabis and intend to stop using it, or if you are concerned about dependence on or addiction to cannabis. Your physician can help you manage any withdrawal effects that you may experience. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment with medical cannabis.

Talk with your healthcare provider about any questions you may have regarding your cannabis use. The information and materials provided to you by PharmaCannis should not be used as a substitute for the care and knowledge that your physician can provide to you.

Regulations

Each registered organization may initially produce up to five brands of medical marijuana product, with prior approval of the Department, which must include at least one brand that has a low tetrahydrocannabinol (THC) content and high cannabidiol (CBD) content, and at least one brand with approximately equal amounts of THC and CBD. Each brand in its final form must have a consistent cannabinoid profile. Independent laboratory testing of the final medical marijuana product is required to test for contaminants and ensure product consistency.

Until independent laboratories receive certification from the New York State Environmental Laboratory Approval Program (ELAP), the Department’s Wadworth Center Laboratory will perform the testing and analysis of final medical marijuana products. Each registered organization may have up to four dispensing facilities, owned and operated by the registered organization, where approved medical marijuana products will be dispensesd to certified patients or their designated caregivers, who have registered with the Department. Dispensing facilities must report dispensing data to the New York State Prescription Monitoring Program Registry and consult the registry prior to dispensing approved medical marijuana products to certified patients or their designated caregivers.

Frequently Asked Questions

You can find a list of commonly asked questions for the New York Medical Marijuana Program here.


Anxiety and depression

When facing a diagnosis of Parkinson’s disease, it is understandable to feel anxious or depressed. But mood disorders such as anxiety and depression are real clinical symptoms of Parkinson’s, just as rigidity and tremor. In fact, at least half of all Parkinson’s patients may suffer from clinical depression at some point during the course of their disease, according to some estimates.

The good news: Over the past decade, researchers have placed increasing focus on investigating these aspects of the disease, and today we have a better understanding of how to treat mood disorders in Parkinson’s and increase quality of life.

Read more at https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?emotions-depression

 

Feeling worried is an understandable reaction to a Parkinson’s diagnosis. But when feelings of constant worry or nervousness go beyond what is understandable, a person may be experiencing anxiety, which is more serious.

Anxiety is a common nonmotor symptom of PD. It is important to note that anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in the chemistry of the brain. Estimates show that between 25 and 45 percent of people with PD experience an anxiety disorder at some point.

Read more at http://www.pdf.org/anxiety

There are two main types of treatment options for anxiety:  medications and psychological counseling (psychotherapy).  Depending on the severity of symptoms, psychotherapy can be used alone or combination with medication. NPF recommends a personalized, holistic and comprehensive strategy for the treatment of mental health problems, meaning that care should be tailored to each person’s individual health needs and preferences.

Read more at http://www.parkinson.org/understanding-parkinsons/non-motor-symptoms/anxiety/What-are-the-Treatment-Options-for-Anxiety

There are many different ways in which a person with Parkinson’s can experience anxiety. The following is a list of common anxiety disorders and a description of symptoms associated with each form. As many as two out of five people with Parkinson’s will experience one of these forms during the course of their illness.

Read more at http://www.parkinson.org/understanding-parkinsons/non-motor-symptoms/anxiety/What-are-the-Symptoms-of-Anxiety

Some people with Parkinson’s may experience anxiety including feelings of unease, worry and fear.

It is often a natural reaction to situations we find threatening or difficult. There are a number of ways of managing anxiety.

Read more at https://www.parkinsons.org.uk/information-and-support/anxiety

 


Sleep Disturbances – from PDF.org

read more at http://www.pdf.org/sleep_disturbance

Sleep Disturbances

Many people with Parkinson’s disease (PD) have trouble sleeping through the night.

In some cases, PD symptoms like rigidity or tremor keep people awake. The brain changes that are part of PD also can cause sleep difficulties, and some people have problems sleeping even before movement symptoms develop and PD is diagnosed. In addition, some PD medications can disrupt sleep at night, and others make people sleepy during the day.

A good night’s rest is essential to feeling well. Disrupted sleep can affect your health, mood and overall quality of life. Furthermore, when people with PD don’t sleep well, the sleep of their care partners is disrupted too. Care partners also need restful sleep to stay healthy.

Symptoms

Nighttime Sleep Difficulties

  • Difficulty going to sleep, because PD symptoms like rigidity make it hard to get comfortable or turn over.
  • Difficulty falling asleep due to symptoms of anxiety or depression.
  • Difficulty staying asleep, because of a need to use the bathroom during the night, the return of motor symptoms when medications wear off, pain or hot flashes with night sweats.
  • Noise produced by tremor against a pillow.
  • Vivid dreams or nightmares caused by levodopa medications.
  • Early morning awakening, from a too-early bedtime or associated with depressed mood.
  • An overwhelming urge to move or an unpleasant sensation in the legs caused by restless legs syndrome.
  • Loud snoring, restless sleep and pauses in breathing during the night caused by sleep apnea. Although sleep apnea is usually associated with being overweight, this is not the always the case for people with PD. As many as 40 percent of people with PD have sleep apnea.
  • Activity, sometimes violent movements such as kicking, punching, running or getting out of bed due to rapid eye movement (REM) sleep behavior disorder. People with REM sleep behavior disorder do not relax their muscles normally during sleep, and thus act out violent dreams. This affects about a third of men with PD, but is less frequent in women with PD.
  • Disruption in the normal sleep-wake cycle caused by excessive sleepiness during the day or taking long naps during the day.

Troublesome Daytime Sleepiness

  • Excessive sleepiness during the day may be a symptom of PD and may even start before the characteristic movement symptoms appear.
  • Many PD medications can cause sleepiness during the day and may even cause sudden sleepiness with potentially dire consequences, such as falling asleep while driving.
  • Too much napping during the day makes it hard to sleep through the night.

Therapies

Good sleep is a foundation for good health. Not only does it contribute to tiredness and fatigue, it can also worsen any cognitive issues you are experiencing. If you have trouble sleeping, remember that you don’t have to “just live with it.” Medical therapies can help some sleep difficulties:

  • A long-acting levodopa medication might prevent PD symptoms from returning during the night. Talk to your doctor about adjusting your PD medications to maximize wakefulness during the day and sleep at night, while controlling your symptoms.
  • For REM sleep behavior disorder, doctors may prescribe melatonin or clonazepam (Klonopin®), which is a long-acting sedative.
  • For sleep apnea, wearing a CPAP device (Continuous Positive Airway Pressure device) at night can help prevent obstruction of the airways. You need to have an overnight sleep evaluation for a sleep apnea diagnosis to be made.
  • Talk to your doctor about over-the-counter sleep aids, such as melatonin, as well as those available with a prescription. It is important to balance the benefits of sleep medications with the risks, especially of daytime sleepiness, cognitive decline and increased falls.
  • Antidepressants are sometimes prescribed to help nighttime sleep.
  • If urinary frequency keeps you up at night, be sure your doctor rules out causes other than PD. In addition, there are several medications that can be helpful, including oxybutynin (Ditropan®), tolterodine (Detrol®), trospium (Sanctura®), solifenacin succinate (VESIcare®), darifenacin (Enablex®), mirabegron (Myrbetriq®) and fesoterodine fumarate (Toviaz®). If your doctor has difficulty managing bladder symptoms, you may be referred to a bladder specialist (urologist).
  • Some physicians prescribe stimulants to help people with PD stay awake during the day.

Tips for Better Sleep

People with PD — and their care partners too — can take these steps to get to sleep faster and stay asleep:

  • Keep a regular sleep schedule — go to bed at the same time each night and get up at the same time each morning.
  • Choose your bedtime based on when you want to get up and plan to spend seven to eight hours a night in bed.
  • Make a bedtime routine — for example, snack, bath, tooth-brushing, toileting — and follow it every evening.
  • Spend time outdoors and exercise every day, in the morning if possible. Avoid exercise after 8:00 PM.
  • If you can’t get outdoors, consider light therapy — sitting or working near a light therapy box, available at drug stores and department stores.
  • If you nap, try to do so at the same time every day, for no more than an hour, and not after 3:00 pm.
  • Avoid stimulants like caffeine, nicotine and alcohol, especially six hours before bedtime. While alcohol can initially cause sleepiness, it actually disrupts sleep.
  • Avoid heavy meals in the evening.
  • If you take PD medications at night, keep your dose and a glass of water close by so you don’t have to get up in the middle of the night.
  • Sleep in a cool dark place and use the bed only for sleeping and sexual activity. Do not read or watch television in bed.
  • Avoid “screen time” — television, phones, tablets such as your iPAD — one or two hours before bed.

In addition, people with PD can:

  • Use satin sheets and pajamas to make moving in the bed easier.
  • Minimize drinking liquids for three hours before bedtime to help prevent frequent nighttime urination.
  • Go to the bathroom immediately before retiring.
  • Place a commode next to the bed, to minimize the effort, and the light needed, to get up during the night.

Sleep Advice from Davis Phinny Foundation

From https://www.davisphinneyfoundation.org/living-well/sleep/

What causes sleep problems in Parkinson’s?

Difficulties with sleep can be caused by a number of factors. Some are directly related to Parkinson’s and its treatments, while others are completely unrelated. While many common issues can be improved with minor medication changes or other tweaks, it is important to understand the causes of common sleep issues associated with Parkinson’s and to discuss with your neurologist and other members of your care team to get the best sleep you possibly can.

read more

MEDICATIONS read more

PAIN read more

ANXIETY, DEPRESSION AND OTHER PSYCHOLOGICAL ISSUES read more

NIGHTTIME TRIPS TO THE BATHROOM (NOCTURIA) read more

CAUSES NOT RELATED TO PARKINSON’S read more

pain not connected to Parkinson’s or sleep apnea.

You Might Also Like

Making the Best of a Bad Night’s Sleep

MAKING THE BEST OF A BAD NIGHT’S…

Tips for When You’re Awake in the Night

TIPS FOR WHEN YOU’RE AWAKE IN THE…

Living Well with REM Sleep Behavior Disorder

LIVING WELL WITH REM SLEEP BEHAVIOR…

9 Easy Tips for a Better Night’s Sleep

9 EASY TIPS FOR A BETTER NIGHT’S…


Simple Relaxation Techniques

From parkinsonsnewstoday.com

If  you have Parkinson’s disease, you are likely to feel stress related to your tremors. Sometimes, you may feel self-conscious. That alone is stressful. These simple relaxation solutions open up natural relaxation responses which can help improve your mood and ease your mind.

The National Institutes of Health (NIH) considers relaxation exercises to be safe for most people. However, just like with exercise routines, people with serious physical health problems such as Parkinson’s should discuss the techniques with their healthcare provider before starting a relaxation routine.

There are many viable techniques for relaxing. These include deep breathing exercises, self-hypnosis, and guided imagery. Each relaxation technique goal is to produce a natural reaction from the body. This should include: lower blood pressure, slower breathing, and a sense of well-being.

We found five easy relaxation exercises that are simple enough for most people to do1 in a chair or while lying in bed.

The first two relaxation tips come from Harvard University and the last three are from the University of Michigan.

Place your hand just beneath your navel so you can feel the gentle rise and fall of your belly as you breathe. Breathe in. Pause for a count of three. Breathe out. Pause for a count of three. Continue to breathe deeply for one minute, pausing for a count of three after each inhalation and exhalation.

While sitting comfortably, take a few slow deep breaths and quietly repeat to yourself, “I am” as you breathe in and, “at peace” as you breathe out. Repeat slowly two or three times. Then, feel your entire body relax into the support of your chair.

Raise eyebrows up and tense the muscles across the forehead and scalp. Feel the tension build and hold. Take a deep breath. As you exhale say “relax” while letting the tension leave your body.

Relax your facial muscles and allow your jaw to open slightly. Let your shoulders drop. Let your arms fall to your sides. Allow your hands to loosen so there are spaces between your fingers. Uncross your legs or ankles. Feel your thighs sink into your chair, letting your legs fall comfortably apart. Feel your shins and calves become heavier and your feet grow roots into the floor. Now, breathe in slowly and breathe out slowly.

Observe your abdomen rising and falling with each breath. Inhale and press your navel toward the spine then tense your abdomen. Feel the tension build and hold it. Take in a deep breath. As you exhale say “relax,” and let the tension leave you.

Here’s a PDF with more relaxation techniques from the University of Michigan.

The NIH recognizes the relaxation response as having broad health benefits including the reduction of pain and restoration of sleep. In addition, research on the relaxation response has shown that this simple technique can increase energy and decrease fatigue. It can increase motivation, productivity, and improve decision-making ability, too. The relaxation response lowers stress hormone levels and lowers blood pressure.

The relaxation response is your personal ability to make your body release chemicals and brain signals that make your muscles and organs slow down and increase blood flow to the brain. We hope these stress relieving solutions help you find a relaxation routine that suits you so that you will continue to practice it each day.


First Dose Group in Parkinson’s Stem Cell Trial Successfully Transplanted

From Parkinson’s News Today

The fourth and last patient of the first group in a clinical trial of stem cell transplants in Parkinson’s disease has successfully received the transplant, the International Stem Cell Corporation (ISCO) reported. Researchers are now preparing for the next stage, in which patients will receive a higher number of cells.

So far, researchers have not recorded any adverse events among the four patients who had neural stem cells, called ISC-hpNSC, inserted into their brains.

If successful, the stem cell therapy has the potential to regenerate lost nerve cells — and revolutionize the way Parkinson’s disease is treated.

“We are very encouraged by the early clinical safety data for ISC-hpNSC,” Russell Kern, PhD, executive vice president and chief scientific officer of ISCO, said in a news release.

The Phase 1 clinical trial (NCT02452723) was launched in March 2016, and expects to enroll 12 patients with moderate Parkinson’s disease. Patients are divided into three groups of four patients each. The groups will receive increasing doses, ranging between 30,000,000 to 70,000,000 neural stem cells.

The main goal of the trial is to assess the safety of the treatment, with patients followed for 12 months after the transplants.

But researchers will also use brain scans to assess whether the cells survive once transplanted, and if they contribute to making the patients better. Participants are assessed using the Unified Parkinson Disease Rating Scale (UPDRS) and other tools, and although the study is small, researchers will evaluate any potential improvements in symptoms.

Parkinson’s symptoms typically appear when a large proportion of brain cells containing dopamine are already gone. And while treatments with added dopamine may improve symptoms, at least for some time, the treatment approach is fraught with dosing difficulties.

The ISC-hpNSC cells are derived from what researchers call human parthenogenetic stem cells. Parkinson’s animal models that received the treatment improved, making researchers and patients alike hope that the same will be seen in patients.

The cells are thought to provide neurotrophic support to brain cells still alive. This means they secrete factors that help dying neurons survive. They are also thought to replace the dead and dying dopamine neurons.

But as the trial started, researchers raised concerns that not enough was known about what the cells do in the brain. The group of researchers also questioned whether the safety follow-up of one year was sufficient, and argued that clinical trials of stem cell approaches may be a premature step, in an article in the Journal of Parkinson’s Disease.

Still, ISCO has an optimistic view of the trial continuation.

“We look forward to dosing our second cohort with 50 million cells and enrolling the rest of our clinical trial participants in 2017,” Kern said. “The Data Safety Monitor Board meeting will be held in the beginning of May and we expect to receive approval to start an accelerated enrollment of patients into the second cohort.”


May 24, 2017 – Schenectady County Meeting

Schenectady County Meeting: May 24, 2017 at 2 PM.

Bernie Elwood from Spikes Trikes will bring a trike for anyone interested in trying to ride a trike. It is a great way to exercise outdoors.

***Please note the meeting location has changed to Congregation Agudat Achim, 2117 Union Street, Schenectady, NY 12309


Five Steps to a Caregiving Plan for Your Family

From AARP Prepare to Care Manual

This guide is designed to help you and other family members discuss and create a caregiving plan for yourself or an aging parent, other relative, or close friend or neighbor. Each of the following five steps includes information on how to get started, questions to ask, and where to find basic resources. Don’t be discouraged if you can’t answer every question or fill in every blank. And remember, you don’t have to do it all at once. The important thing is to start—and continue—the conversation in a way that works for you and your family. STEP 1 Prepare to Talk STEP 2 Form Your Team STEP 3 Assess Needs STEP 4 Make a Plan STEP 5 Take Action


May 11, 2017 Join the CDPSG Support Group for the monthly meeting.

The Capital District Parkinson’s Support Group meets at 7 PM the second Thursday of every month at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.

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

Our speaker:
Heintje Calara MA, RN –   Has 25 years of nursing experience. He earned his nursing masters degrees from New York University. Heintje  is currently a candidate of doctoral degree in nursing practice with research project in the nursing care of Parkinson’s disease.
His work has been presented at the 2016 World Parkinson’s Congress (WPC) in Portland, OR, and also at the 2017 American Association of Neuroscience Nurses (AANN) in Boston, MA.
He served as the Parkinson’s disease nurse specialist at the NYU Langone Medical Center movement disorders center for many years and is now the nurse educator for the intestinal levodopa treatment for the northeast region of the US.
At our meeting,
Heintje will speak briefly about the treatment then a patient volunteer partner, who is currently on the intestinal levodopa treatment for Parkinson’s disease, will be sharing his/her own unique account on being on this treatment, what helped him/her decide, barriers overcome, questions asked, and how he/she is living with this treatment. There will be time for questions and answers.
We also will have group planning, refreshments, networking and social time.

Rest and sleep

Parkinson’s disease creates many challenges to getting a good night’s rest. Try these tips to help you get enough rest and sleep, which is an important component of overall health and quality of life.

Getting a Good Night’s Rest

  • Make a regular, relaxing bedtime routine a habit.
  • Maintain a regular sleep schedule: get up and go to sleep at the same time every day.
  • Get plenty of bright light exposure during the day, particularly natural daytime light.
  • Decrease fluids several hours before bedtime, and go to the bathroom before getting into bed to sleep.
  • Avoid strenuous exercise, alcohol, nicotine and caffeine within 4 hours of your bedtime.
  • Use your bed only for sleeping and intimacy with your partner.
  • Banish animals from the bed!
  • Customize your sleep environment: invest in a good mattress and pillows.
  • Set the bedroom temperature at a cool, comfortable level.
  • Limit daytime napping to a 40-minute NASA nap (yes, tested by astronauts!).
  • Lie down to sleep only when sleepy. Learn to tell the difference between fatigue and sleepiness.
  • If you are unable to sleep after 15 minutes, get out of bed and engage in a relaxing activity like listening to music, meditation or reading until you are sleepy.
  • Turn off the TV. If weaning yourself of a TV habit is difficult, try a relaxation or nature recording.
  • Keep lighting and noise at low levels when trying to sleep.
  • Eliminate the common but bad habit of “checking the clock” throughout the night.
  • Limit prescription sedatives to a 2-week period; instead, try over-the-counter alternatives such as Valerian root capsules.
  • Sleep as much as needed to feel refreshed, but avoid spending too much time in bed.

Getting into Bed

  • Approach the bed as you would a chair; feel the mattress behind both legs.
  • Slowly lower yourself to a seated position on the bed, using your arms to control your descent.
  • Lean on your forearm while you allow your body to lean down to the side.
  • As you body goes down, the legs will want to go up like a seesaw.
  • DO NOT put your knee up on the mattress first. In other words, don’t “crawl” into bed.

Rolling or Turning Over in Bed

  • Bend your knees up with feet flat.
  • Allow knees to fall to one side as you begin to roll.
  • Turn your head in the direction you are rolling and reach top arm across the body.
  • Some PD patients find that “silk sheets” help them move better in bed.

Scooting Over in Bed

  • Bend your knees up with feet flat.
  • Push into the bed with feet and hand to lift your hips up off the bed. Then shift hips in the desired direction.
  • Finish by repositioning feet in the direction your hips moved.

Getting Out of Bed

  • Bend knees up, feet flat on the bed.
  • Roll onto your side toward the edge of the bed by letting the knees fall to that side. Reach across with the top arm, and turn your head to look in the direction you are rolling.
  • Lower your feet from the bed as you push with your arms into a sitting position.


May 18, 2017 – Sleeping Well with Parkinson’s – on line discussion

Hear expert discussion, and ask questions in MJ Fox Foundation Third Thursdays Webinar series.

Sleep disturbances are a common non-motor symptom of Parkinson’s disease that may cause difficulty falling or staying asleep. In this webinar, we’ll discuss sleep disorders that can occur in Parkinson’s, how to manage them and current research on sleep and PD.

Title: Sleeping Well with Parkinson’s

Date: Thursday, May 18, 2017

Time: 12:00 PM Eastern Time

Duration: 1 hour


Sunnyview’s Adaptive Recreation Experiences program

Introducing the 2017 Summer Adaptive Recreation Experiences … Sunnyview’s Adaptive Recreation Experiences program provides individuals with disabilities the opportunity to return to previously enjoyed activities or to try something new. Sessions are designed to encourage and assist each participant to have fun, and be successful on a variety of levels. All programs are open to those in wheelchairs, as well as ambulatory participants. Experiences are staffed by Sunnyview therapists, volunteers, and experts in that specific activity. Each activity offers a unique opportunity to try our adaptive equipment

More information on printable flyer here


Dancing Might Help Prevent Parkinson’s, Recent Research Points Out

Dancing helps prevent Parkinson’s disease, obesity, dementia, depression and anxiety, says Dr. Patricia Bragg, CEO of organic health company Bragg Live Food Products.“New studies show that dancing increases your memory and helps prevent a wide variety of diseases such as Alzheimer’s,” Bragg said in a press release.

Bragg’s father, Dr. Paul C. Bragg, was the originator of health stores in the United States, in 1912. For both father and daughter, dancing became a way of life.

Today, the 87-year-old Bragg sees herself as a crusader, born to carry on her father’s health movement, which pioneered many approaches that today would be considered “‘alternative medicine.”

“I have been dancing all of my life, and it’s not surprising to me that medical science is proving what I’ve known all along,” said Bragg.

Dancing has indeed been shown to help people with Parkinson’s recover balance and muscle control, as well as to help reduce the risk of Alzheimer’s dementia by 50 percent, which is expected to strike nearly 14 million Americans over the next 30 years.

“Think of the millions who can avoid this trauma simply by dancing,” said Bragg, the author of 10 best-selling “self-health” books.

According to a University of California Berkeley report, dancing has been shown to reduce depression, anxiety and stress and boost self-esteem. The New York Times also recently reported that dancing improves how the brain processes memory. Another study comparing the neurological effects of country dancing with those of walking and other activities suggested there might be something unique about social dancing.
In fact, dancing seems to increase cognitive acuity at all ages in a singular way, since they demand split-second decisions and exercise neuronal synapses. Dancing also helps keep the only neural connection to memory strong and efficient.
“My memories of dancing with Fred Astaire, Lawrence Welk, Arthur Murray and Gene Kelly are crystal-clear and so is my memory of the great time I had dancing last night,” said Bragg.


11 Facts About Parkinson’s Disease You May Not Know

Most people know of Parkinson’s disease and have a good idea of its symptoms, but very few know much more than that about this progressive illness. Since April is Parkinson’s disease awareness month, we’ve put together some simple stats and facts that you can share near and far.

This post appeared first on Parkinson’s News Today.

With help from the Parkinson’s Disease Foundation, everydayhealth.com, and ecaring.com, here are 11 facts about the disease most people don’t know. (Some of them may even surprise you!)

It’s a movement disorder. 
Parkinson’s disease is a neurodegenerative disease whereby cells responsible for producing dopamine die off in the substantia nigra area of the brain. Dopamine is essential for movement as it acts as a transmitter for signals from the brain to other parts of the body.

Who found it?
Parkinson’s disease was discovered by British surgeon Dr. James Parkinson in 1817.

How prevalent is it?
Approximately one million people have Parkinson’s disease in the U.S. and there are around 50,000 new cases diagnosed eac1h year.

Most patients are middle-aged. 
The average age of someone diagnosed with Parkinson’s disease is 56. Around 4 percent of Parkinson’s patients are diagnosed before the age of 50 and it’s considered young-onset if diagnosed before the age of 40.

When is it considered young-onset Parkinson’s disease?
It’s considered young-onset if diagnosed before the age of 40. The youngest recorded case of Parkinson’s was a 12-year-old patient.

How is it diagnosed?
There is no blood test or scan that can diagnose Parkinson’s disease. Doctors look for four classic symptoms of the disease before reaching a diagnosis: tremors, rigidity in the wrist and elbow joints, lack or slowness of movement, and an unstable posture.

It affects mostly men. 
Parkinson’s disease is twice as likely to affect men than women.

There’s no known cause. 
There is no known cause of Parkinson’s disease although a family history of the disease will increase your risk. Researchers think environmental factors such as smoking, pollution, heavy metals, medications and illegal drugs may be responsible for the onset of the disease. Head trauma, brain inflammation, and stroke have also been associated with the disease.

Parkinson’s is expensive. 
Treating patients with Parkinson’s disease costs the U.S. around $25 billion a year. The average patient will need $2,500 worth of medication each year and therapeutic surgery could cost up to $100,000.

How do you treat it? 
There is no cure for Parkinson’s disease but there are medications that can help patients with the symptoms. Patients can also undergo deep brain stimulation where electrical current is used to help block tremors and other movement symptoms of the disease.

There’s a correlation between Parkinson’s and depression. 
Dopamine is also associated with mood as well as movement. It’s estimated that more than half of Parkinson’s disease patients suffer from depression and around 40 percent suffer from anxiety.


10 Organizations That Support Parkinson’s Disease Patients and Their Families

If you’re struggling with Parkinson’s disease or know someone who is, it’s incredibly helpful to have a list of organizations that can support you or your loved one along the way. The following is not an exhaustive list, but hopefully it will prove to be a helpful resource.

The post 10 Organizations That Support Parkinson’s Disease Patients and Their Families appeared first on Parkinson’s News Today.

1. National Parkinson’s Foundation helps patients actively enjoy life through expert care and treatment research.

2. American Parkinson’s Disease Association provides support, education, and research to help you live a fuller life.

3. 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.

4. 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.

5. European Parkinson’s Disease Association advocates for the rights and needs of patients and their families.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

Having resources that help keep you informed, and offer support and encouragement to patients and their loved ones is so important. These are just 10 of the hundreds of organizations out there that are available to you. You can search online or visit your local library for more.


Can Stress Cause Parkinson’s?

Read more

Conclusion
“We speculate that chronic emotional stress may cause dopaminergic cell loss in susceptible individuals and propose that functional somatic syndromes are commonly seen in patients with PD. Dopaminergic dysfunction with abnormalities in striato–thalamo–cortical brain circuits may be the shared underlying cause.”


Control DBS with ipod

You can’t see tremors in Paul Detlefsen’s hands now, but a decade ago, the outlook for this 43-year-old Parkinson’s disease patient looked a lot different.
“My symptoms were mostly in the right arm, sever tremors,” he said.

Read more


Knocking out Parkinson’s one punch at a time

Video of local boxing class

ALBANY, N.Y. (NEWS10) — As many as 1 million people live with Parkinson’s disease in America. Now, a new exercise program is energizing patients diagnosed with the movement disorder and renewing hope among patients.


Positive Thinking may improve health and extend life

“Look on the sunny side of life.”
“Turn your face toward the sun, and the shadows will fall behind you.”
“Every day may not be good, but there is something good in every day.”
“See the glass as half-full, not half-empty.”
Researchers are finding that thoughts like these, the hallmarks of people sometimes called “cockeyed optimists,” can do far more than raise one’s spirits. They may actually improve health and extend life.

Read more 


Parkinson’s Patients Could Dance Their Way to Better Health

A recent article in the Harvard Gazette suggests dance as a potential treatment for neurodegenerative disorders such as Parkinson’s disease (PD).

Imaging studies have identified several brain regions involved in the complex, rhythmical, and coordinated movements that constitute dance. The motor cortex is — as with other kinds of voluntary movement — involved in planning, controlling, and executing dance moves.

Read more