Monthly Archives: July 2017


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 most months at the Beverwyck Senior Center located at Krumkill Road, Slingerlands, New York.  In January and February we meet in the afternoon of the second Saturday at 1:30.

When are our meetings?

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!
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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

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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

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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

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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

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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

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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.

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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

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on-line support groups

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

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

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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/

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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.

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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.®

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

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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.    

 

 

 


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.