Monthly Archives: April 2017


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


Exercise Classes

Boxing– Friday 10:00 am  Schott’s Boxing  –  21 Vatrano Rd, Albany, NY 12205  (518) 641-9064. This boxing PD activity is in presented in partnership with Hope Soars.  The cost is $10.00 for the initial visit which covers the cost of the hand wraps. Hope Soars is partnering with Schott’s and will pay most of the membership fee which will be determined based on class size. If you have any question’s please contact Mark Burek (518) 428-0056.
P4PPedaling for Parkinson’s M/W/F @ Bethlehem Y, Delaware Ave. 12 Noon.
Call your local YMCA’s for dates & time (perhaps cost) in your area.
P4P-Pedaling for Parkinson’s – Saratoga YMCA no charge—Thursday & Friday—phone (518) 583-9622
P4P-Southern Saratoga (Clifton Park YMCA) – Monday, Wednesday, Friday- members free, non-members $5.00 – phone (518) 371-2139
P4P-Glenville YMCA –  Monday, Tuesday, Thursday– Members free, non-members $5.00—phone (518) 399-8118
P4P-Duansburg/Delanson YMCA –  Monday, Thursday– Members free, non-members $6.00—phone (518) 895-9500
P4P-Troy YMCA – Monday, Wednesday, Friday – Members free, non-members $5.00– (518) 272-5900
P4P – Wednesday, Friday, Parkinson’s Wellness Class Thursdays 12 N -1:45 Cost $45 for 7 weeks – Bethlehem YMCA – 900 Delaware Avenue, Delmar, NY 12054 – Phone (518) 439-4394 Contact the Y for more information
PWR PD Wellness Recovery – 6 wk classes run independently by local YMCA’s. Bethlehem Y: call (518) 439-4394 for dates/times/cost $$
PWR PD Wellness Recovery – Thursday 10:30 $45/7 weeks Clifton Park Y: call (518) 439-2139 for more.
** 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
Thursdays Dance Class– Dance Theater of Syracuse, 117 Harvard Place, Syracuse, NY (504) 570-0752 1:45 – 3:00 PM
Tuesday Yoga Class- Heartspace Yoga and Healing Arts, 747 Madison Avenue, Albany, 12208, Donation is requested. Class is for Parkinson’s Patients and their family/caregivers, for information call Instructor Tamara Cookingham (518) 495-3239 tamaracookingham@gmail.com
 
Thursday Yoga Class- 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  
Dance for PD from home – http://capture.nbs-enb.ca/27/page/Home.aspx 
Yoga classes online every Wednesday live or view archived. http://nwpf.yourbrandlive.com/yoga  
 

FOUNDATIONS

 

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.


June 25, 2017 – Hope Soars and the Tri-City Valley Cats

When
Sun, June 25, 4pm – 9pm

Where
Joseph L. Bruno Stadium,
80 Vandenburgh Avenue, Troy, NY 12180, USA (map)

Description
Join us for a great night of baseball. Tickets are $25 which includes the pre-game buffet, a souvenir hat, and Reserved Box seats.
 

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


Dance Through PD Class – Every Tues at 1:30 starting June 6, 2017

Dance Through Parkinson’s

View printable flyer Dance Through Parkinson 

“The classes help me feel physically better, which helps my mood. It helps with my balance and gait issues. I have met many new friends with PD at varying levels of PD. It helps me be hopeful. The classes are a good challenge, but generally within my PD capabilities.” –Parkinson’s dance participant

CLASSES START TUESDAY, JUNE 6, 2017

 AND 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

Partners and caregivers welcome.

Persons with MS and other neuromuscular conditions welcome.

Walkers and wheelchairs welcome. No experience necessary.

$5 per class.

Teacher: Rachelle Smith-Stallman

Designed to engage participants’ minds and bodies through many styles while addressing such PD -specific issues as balance, flexibility, coordination and gait.

*Partially Supported by HopeSoars.org*