Monthly Archives: March 2018


Finding the right Parkinson’s support group

Many Parkinson’s fighters find support groups tremendously helpful in coping with the everyday realities of having the disease. While a support group doesn’t exactly replace the standard medical care, it can make an individual feel less isolated as he/she makes connections with others facing similar challenges.

Since such groups come in different formats (from large, formal meetings to smaller “living-room” get-togethers), it is okay to be confused and not know which one will benefit you the most. Worry not! Here, we have a step-by-step guide to finding a Parkinson’s support group that’s right and equally comfortable for you.

Read more


Book: Old Age: A Beginner’s Guide – by Michael Kinsley

Vanity Fair columnist Michael Kinsley escorts his fellow Boomers through the door marked “Exit.”

The notorious baby boomers—the largest age cohort in history—are approaching the end and starting to plan their final moves in the game of life. Now they are asking: What was that all about? Was it about acquiring things or changing the world? Was it about keeping all your marbles? Or is the only thing that counts after you’re gone the reputation you leave behind?

In this series of essays, Michael Kinsley uses his own battle with Parkinson’s disease to unearth answers to questions we are all at some time forced to confront. “Sometimes,” he writes, “I feel like a scout from my generation, sent out ahead to experience in my fifties what even the healthiest Boomers are going to experience in their sixties, seventies, or eighties.”

This surprisingly cheerful book is at once a fresh assessment of a generation and a frequently funny account of one man’s journey toward the finish line. “The least misfortune can do to make up for itself is to be interesting,” he writes. “Parkinson’s disease has fulfilled that obligation.”

More https://www.amazon.com/Old-Age-Beginners-Michael-Kinsley/dp/1101903767


Are you interested in joining a Parkinson’s caregivers support group?

In response to requests at the Capital District Parkinson’s Support Group, caregivers’ support groups are being formed.  In order to provide convenient meeting times, we are asking for your preferences.

STEP I:  Questionnaire.  If you live in the greater Capital District, please complete the questionnaire by April 13th, either online here OR use the form below and mail to Nancy Eson, 2 Azalea Ct., Albany, NY  12205.

STEP 2: Organizational meeting.  On Monday, April 16, 2018, 7:00 p.m. at the Beverwyck Terrace Community Room, 41 Beverwyck Ln, Slingerlands, NY 12159, you are invited to an organizational meeting.  At this time, new groups will be formed based on preferred meeting times.  Information on how support groups might wish to function will be presented.

You do not need to be present at this meeting to participate in a support group.  If you complete the questionnaire, and do not attend the meeting, we will share your contact information with a member of your group, so that they can contact you.

Questions?  Please email: njeson@gmail.com

Printable PDF File: PARKINSONS CAREGIVER QUESTIONNAIRE


Exercise Classes

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.

 


P4P-Pedaling for Parkinson’s –Saratoga YMCA no charge – Monday & Friday – phone (518) 583-9622 (Dates & Times verified 3/23/18)

P4P-Duanesburg/Delanson YMCA – Monday’s and Thursday’s (518) 895-9500 member’s free, non-members $6.00. (Dates & Times verified 3/23/18)

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 (Dates and Times verified 3/24-18)

P4P-Glenville YMCA – Tuesday, Wednesday, Thursday– Members free, non-members $5.00—phone (518) 399-8118 (Dates & Times verified 3/23/18)

Neuromotor Wellness – Glenville YMCA – Monday’s 12 noon – 1:15 PM. (Dates & Times verified 3/23/18)

P4P-Troy YMCA – Monday, Wednesday, Friday – Members free, non-members $5.00– (518) 272-5900 (Dates and Times verified 3/23/18)

P4P-Guilderland YMCA – Monday, Wednesday, Friday – Member’s Free, non-members $5.00, Neuromotor Wellness Tuesdays and Thursdays $65 members, $80 non-members-Contact Chris Wilson – (518) 456-3634 ext 1140 for more information (Dates and Times verified 3/23/18)

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 (Dates and Times verified 3/23/18)

***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. 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 questions, please contact Mark Burek (518) 428-0056.

Rock Steady Boxing CNY, 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 (RSB) 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

Rock Steady Boxing for Onondaga County is daily, call (315) 622-2332 for more information

Dance Through Parkinson’s Colonie – 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***

Dance Through Parkinson’s Saratoga – Classes are every Thursday from 1:30 – 2:30 PM at the National Museum of Dance, 99 South Broadway, Saratoga Springs, NY 12866, (518) 584-2225 extension 3001- There is no cost for this class.

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


Rachel Kurtz – Holistic Health Coach

Rachel is a Holistic Health Coach and is really focused on helping folks dealing with chronic illness, or pain. Rachel has expressed a strong interest in helping folks dealing with movement disorders, especially people with Parkinson’s. She takes a multi-disciplined approach to dealing with her clients.

Rachel’s primary goal is to support and guide her clients, whether healthy or living with chronic pain or illness, to live a more healthy and fulfilling life. Working closely with her clients support system and health care practitioners, Rachel will develop customized programs to help achieve individual health and wellness needs. In addition, she uses
insights from the latest research in positive psychology and health.

From Here to Wellbeing
Rachel Kurtz, Holistic Health Coach
Located in Saratoga Springs
518-260-3973 * rkurtz09@gmail.com

See attached flyer

Rachel Kurtz_Health Coach_3-11-18

 


March 22, 2018 – Community Caregivers hosts open house

Thursday, March 8, 2018 – 15:46

GUILDERLAND — Community Caregivers announces its first Spring Open House, “Meet Community Caregivers,” on Thursday, March 22, from 4 to 6 p.m.

The open house will take place at the Community Caregivers’ office at 2021 Western Ave, Suite 104, in Guilderland.

A not-for-profit organization, the Community Caregivers harnesses the expertise and energy of volunteers to  provide non-medical services, including transportation and caregiver support, at no charge to residents of Guilderland, Bethlehem, Altamont, New Scotland, Berne, Knox and the city of Albany.

“We welcome those interested in learning about our ‘neighbor helping neighbor’ services for themselves or a loved one,” said Acting Director Larry Miller in a release from the Caregivers. “We have resources and volunteer services to support family caregivers.

“We also welcome prospective volunteers to stop in to pick up volunteer information and sign up for a springtime orientation. And, we invite community members who are thinking about what it takes to live at home as they grow older.”

The open house will offer information about local efforts for “aging in place” and the nationwide and fast-growing Village Movement.

Light refreshments will be served and helpful and information about local resources will be distributed. Experienced staff members will be on hand to answer questions.

Call 518-456-2898 for more information or for directions to the open house.


Quotes from Steven Hawking

On Taking Risks

“I want to show that people need not be limited by physical handicaps as long as they are not disabled in spirit.”

 

The Meaning of Life

“Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at.”

 

NY Times Obituary

 


March 19, 2018 – Saratoga Support Group meeting

SARATOGA PARKINSON’S SUPPORT GROUP

 

Date: Monday, March 19th, 2018

Time: 2:00 PM

 

Location: Woodlawn Commons Bldg,

Saratoga Room 2nd Floor

At Wesley Health Care Center

156 Lawrence Street

Saratoga Springs, NY 12866

 

This month our Speaker will be Lisa W. Camp Wellness Director at Family YMCA of Glens Falls Area. Lisa will conduct a chair YOGA class and speak to the benefits for all of us of this type exercise.

All persons with Parkinson’s, their families, friends and caregivers are welcome to attend.

For additional info, please call Bruce McClellan at 331-9611 or Kevin McCullough 518-222-4247.


Useful Assistive Devices for Parkinson’s Disease

Parkinson’s disease (PD) can make daily living challenging. As the disease progresses, the motor symptoms such as tremor or shaking, stiffness, slow movements, and unsteady balance can make it difficult to accomplish everyday tasks, but there are many assistive devices available to make daily activities easier. Assistive devices can also help improve a person’s safety around the home and reduce the risk of falls.

Read more

https://parkinsonsdisease.net/living-with-pd/assistive-devices/


Creativity and Art Therapy

Adapted from https://www.davisphinneyfoundation.org/blog/art-therapy

There is speculation that dopamine enhancing medications can result in a surge of creativity in people living with Parkinson’s.


Some of the reasons art-making can benefit you:

  • Finding Pleasure. Art making is enjoyable. There is no such thing as a “wrong” mark. Every expression is valid.
  • Experiencing Control. Art making is an activity in which the artist — you— can experience choice (through color, medium, line, subject matter, etc.) and control over your environment.
  • Valuing Individuality. Free creation can encourage spontaneity which can, in turn, improve confidence in your own ideas and in yourself, overall.
  • Expressing Yourself. Art is another language for communication that can be done at an artist’s own pace. The pressure to communicate quickly, accurately or without hesitation does not exist.
  • Relaxation. Art making has been proven to lower blood pressure, reduce repetitive and uncontrollable (anxious) thoughts and lift depression.
  • Finding Flow in Mind-Body Connection. In a relaxed state with focus on the expression rather than on the physical movement itself, motion can become more fluid.
  • Strengthening Concentration, Memory & Executive Functions. Art making increases the bilateral activity in the brain. When drawing or painting, you are using both the right and the left hemispheres of the brain. This is wonderful way to take greater advantage of mental resources.

ART THERAPY AND PARKINSON’S SYMPTOMS

In addition to the intangible and ethereal ways that life can be enhanced through creativity and expression, art making can be used therapeutically to address specific symptoms of Parkinson’s.

  • Tremor. Approximately 70% of people living with Parkinson’s are affected by tremor, and this can be exacerbated by stress. Relaxation is key. In an art studio or other safe space where acceptance is nurtured and focus is on the process rather than on the product, art making can lower blood pressure, slow down breathing and calm the central nervous system. Acceptance of a tremor can actually soothe the tremor.
  • Freezing. When the body is on autopilot, often during repetitive movement, and is interrupted, neuromuscular freezing can result. When you are deeply immersed in art making, the focus shifts to creating with deliberate, novel motions, and you are less likely to freeze.
  • Impaired speech. The physical and cognitive symptoms of Parkinson’s can result in impaired speech. Self-expression and communication with others is essential to well-being. Art making opens a door for non-verbal communication. The act if creating benefits you, the artist, and the act of sharing what you’ve created strengthens your relationships with others.
  • Isolation and Depression. The social and emotional connections you form by sharing a safe, creative space are invaluable for combating isolation and depression. An art therapy support group can be beneficial for those living with Parkinson’s as well as for care partners and caregivers. I have witnessed first hand the emotional support, information, and inspiration that members of these groups provide to one another in a way that only someone that has experienced living with Parkinson’s could do.

7 Ways the Arts Can Help People with Parkinson’s Disease

https://www.michaeljfox.org/foundation/news-detail.php?ways-the-arts-can-help-people-with-parkinson-disease

  1. Singing has been found to help people with Parkinson’s disease improve voice strength and volume.
  2. Besides being relaxing, playing an instrument, painting and other arts endeavors can help people with Parkinson’s maintain motor skills.
  3. Use your craft to help raise awareness about Parkinson’s disease. Whether you’re painting a self portrait, writing a personal essay or even penning a play, creative works can help others understand your experience better.
  4. Many people with Parkinson’s have found that dance helps improve their balance, and that moving to a rhythm helps them avoid freezing episodes. Any exercise has also been found to improve Parkinson’s symptoms such as gait and flexibility.
  5. Art isn’t limited to painting and drawing. Any engrossing activity that you enjoy can help you relax and potentially manage symptoms.
  6. Enjoying a hobby can also be a way to connect with others who also have Parkinson’s, or who simply share your interests.
  7. If there’s a hobby you enjoyed that your Parkinson’s symptoms have impacted, our community recommends trying them again and making the most of your new “style.”

 

 


Dyskinesia

An Overview of Dyskinesia

Dyskinesia is an abnormal, uncontrolled, involuntary movement. It can affect one body part, such as an arm, leg or the head, or it can spread over the entire body. Dyskinesia can look like fidgeting, writhing, wriggling, head bobbing or body swaying. It doesn’t happen in everyone with Parkinson’s, and in those who do have it, it occurs to different degrees of severity. In some people, dyskinesia may be painful or bothersome to the point that it interferes with exercise, social life or other daily activities. Many people, though, say they prefer having dyskinesia to being rigid or less mobile due to Parkinson’s.

Dyskinesia tends to occur most often during times when other Parkinson’s symptoms, such as tremor, slowness and stiffness, are well controlled. (This is what doctors and researchers call “on” with dyskinesia.) Stress or excitement can exacerbate dyskinesia.

 

More from M.J Fox https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?dyskinesia

 

 


New wearable tremor suppression gloves may hold huge benefits for Parkinson’s disease patients

A new prototype for wearable tremor suppression gloves has a team of Western University researchers believing real change is on the way for the more than 6 million people in the world afflicted by Parkinson’s disease.

Ana Luisa Trejos, an Electrical and Computer Engineering professor at Western, and members of her Wearable Biomechatronics Laboratory Group have developed a novel approach for designing wearable technology that allows those with Parkinson’s to exhibit improved motor control while reducing or even restricting involuntary muscle contractions commonly associated with the long-term and degenerative neurological disorder. More than 25 percent of people with Parkinson’s disease have an associated action tremor.

Previous studies from Trejos and her team show suppression devices targeting elbows or wrists often produce exaggerated tremors in the fingers, which causes even more difficulty for those with Parkinson’s.

” If you have seen anybody with Parkinson’s that has tremors, they have them in their entire body but it’s the ones in their fingers that really prevent them from performing the activities of daily living,” explains Trejos, also a key investigator at Western’s Bone and Joint Institute.

Instead of suppressing tremors, which is what most other tremor suppression devices do, these new personalized gloves actually track voluntary movement so if a person is trying to accomplish a particular task, the glove allows the action to happen while minimizing the tremor.

“Our gloves don’t suppress all movements, which is what most other wearable tech systems do,” says Trejos. “They are either suppressing or not suppressing movement so when a person is trying to perform a specific task, the devices actually prevent them from performing the action they are trying to perform. They have to act against it. Our gloves actually allow the voluntary movement to happen and at the same time, prevent the tremor from occurring.”

The new gloves will be custom designed for both hands of each patient to maximize the benefits of the wearable technology. The prototype was created specifically for the left hand of Western doctoral student Yue Zhou, who 3D-printed its key components. Mary Jenkins from Western’s Schulich School of Medicine & Dentistry and Michael Naish from Mechanical and Materials Engineering at Western also collaborated on the project.

“While collecting data, we have seen first-hand

that people with Parkinson’s get really frustrated when they can’t do something on their own and I feel our glove will allow them to get back to their daily living,” says Trejos. “It can be very frustrating to not be able to eat or button a shirt on your own. Or even draw. Things we take for granted. By creating a glove that allows people to perform these actions while suppressing the tremors, I think they could go back to being much more independent in their own homes for a far longer period of time.”


MRI-Focused Ultrasound Undergoing Phase 3 Clinical Trial for Parkinson’s Treatment

New technology that uses MRI-guided focused ultrasound to target areas of the brain affected by Parkinson’s disease and improve motor symptoms will be further tested in a pivotal Phase 3 clinical trial.

Led by the University of Maryland Medical Center (UMMC) and the University of Maryland School of Medicine (UMSOM), the randomized trial will assess the safety and effectiveness of the novel procedure. It is the final step before the U.S. Food and Drug Administration (FDA) will consider approving it as a nonsurgical treatment for  Parkinson’s.

“The goal of the focused ultrasound treatment is to both lessen the main symptoms of Parkinson’s disease, which include tremors, rigidity and slow movement, as well as treat the dyskinesia that is a medication side effect, so that less medication is needed,” Howard M. Eisenberg, MD, the trial’s lead investigator, said in a press release.  Eisenberg is a professor and the chair of neurosurgery at both UMSOM and UMMC.

Participants are currently being recruited for the new trial (NCT03319485), which follows a previous study where MRI-guided focused ultrasound led to a 62% improvement in upper-limb tremors, compared with 22% in the control group, in patients with tremor-dominant Parkinson disease who did not respond to other forms of therapy.

Findings were published in the study, “Safety and Efficacy of Focused Ultrasound Thalamotomy for Patients With Medication-Refractory, Tremor-Dominant Parkinson Disease: A Randomized Clinical Trial,” in the journal JAMA Neurology.

“The results of the pilot trial, so far, are very encouraging,” said Eisenberg about the first trial conducted in 2015 with 20 patients, the majority of whom were treated at UMMC.

With the new technology, clinicians direct ultrasound waves to a brain structure called the globus pallidus, which helps regulate voluntary movement, to destroy damaged tissue, decreasing the uncontrolled movements that characterize Parkinson’s disease.

Doctors use magnetic resonance imaging (MRI) to create a temperature map of the brain, giving them a real-time picture of the region they want to hit with the sound waves. They then raise the energy, directly targeting that area of the brain to destroy the tissue.

Patients are awake and alert the entire time in the MRI scanner, enabling them to give clinicians constant feedback. They are fitted with a helmet through which the energy is converted into sound waves, which are then targeted to the globus pallidus. The approach is noninvasive, meaning there is no surgery or radiation treatment involved.

Current therapies to lessen movement and coordination problems in Parkinson’s patients include levodopa (sold under the brand name Dopar, among others), which is the most common. Patients with advanced Parkinson’s may undergo surgery, known as deep brain stimulation, to implant micro-electrodes in the brain that help control tremors, rigidity and dyskinesia (abnormal, uncontrolled, involuntary movement).

“For people with Parkinson’s disease and other movement disorders such as essential tremor, focused ultrasound is an appealing alternative to deep brain stimulationbecause it does not involve more invasive surgery,” said Paul S. Fishman, MD, PhD, professor of neurology at UMSOM and a neurologist at UMMC.

Enrollment in the study is approximately 80 to 100 participants, and the inclusion criteria were designed to include a wider population of Parkinson’s patients. Sponsored by InSightec, the trial is recruiting participants in the U.S. at the University of Maryland Medical System, Maryland; Weill Cornell Medicine, New York; and The Ohio State Wexner Medical Center, Ohio.

“University of Maryland Medicine is a world leader in pioneering MRI-guided focused ultrasound to become a new standard of care for treating many devastating brain diseases including Parkinson’s, essential tremor and glioblastoma, an often deadly type of brain cancer,” said E. Albert Reece, MD, PhD, MBA, vice president of medical affairs at the University of Maryland and dean of UMSOM.