Author: Marilyn

WHAT DID YOU SAY? COMMUNICATION AND STRAINED RELATIONSHIPS

“Communication, is not a singular process, and a spouse or other significant other often has to be invited into a treatment visit to help them better understand how their own communication style or behaviors may support or limit the progress of their loved ones. …Having a diagnosis of Parkinson’s disease or a related diagnosis can sometimes take a toll on relationships. …If speech and hearing problems are not addressed, talking to one’s spouse, which may have been a pleasurable and  emotionally fulfilling part of a couple’s relationship, may gradually disappear and become another burden associated with the disease.” –Mary Spremulli, MA, CCC-SLP

Read more here from Voice Aerobics about communication and swallowing disorders. “Licensed speech-language pathologists and audiologists are eager to help people communicate effectively across the lifespan. Take advantage of their help!” Mary Spremulli

CAN ZEBRA FISH HELP YOU SLEEP??

Zebra Fish

Excerpting from a June 19, 2019 Parkinson’s News Today article by Catarina Silva: According to a study of zebra fish, not getting enough sleep may cause memory defects and emotional changes due to changes in dopamine metabolism. (Sleep Deprivation Caused Memory Defects and Emotional Changes in a Rotenone-based Zebra fish Model of Parkinson’s Disease”, published in Behavioural Brain Research.)

Researchers wrote: “In addition to cognitive and emotional disorders, sleep abnormalities are also prevalent in Parkinson’s disease. The problem of sleep is not only the characteristics of the disease itself, but also related to medication and dyskinesia such as tremor and rigidity.”

Sleep is an essential physiological process, and lack or shortage of sleep time causes fatigue, increase of mood swings, and can affect learning and memory. Some studies have shown that sleep deprivation can result in emotional and cognitive impairments.

A team of Chinese researchers investigated the effects of sleep deprivation on locomotor activity, memory and emotional behavior in a zebrafish model of Parkinson’s disease. To understand how tiny fish are helping with research for a cure, read more here

WORRIER OR WARRIOR..DO YOU HAVE A CHOICE?

Sherri Woodbridge was diagnosed with Young Onset Parkinson’s disease over fifteen years ago.
Her column, “Journeying Through Parkinson’s Disease” appears regularly on the Parkinson’s News Today website (click here), and we often share her first-hand wisdom in our own blog updates.

Sherri can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in…a warrior role model who “gets it”!

FACT-FINDING AT A LIBRARY WHERE YOU DON’T NEED A CARD!

New Fact Sheets Are Available!

The Parkinson’s Foundation has a free library with the latest Parkinson’s disease (PD) related information. To view the following topics and many more – Seeking a Specialist, Physical Therapy, Depression, Intimacy, Impulse Control, Non-drug options, Anxiety, Fatigue or Apathy – click here.

I’M TRYING TO TALK AS LOUD AS I CAN!

Free App Available for Improving Speech Volume
and Clarity!

Being able to communicate effectively obviously affects everyday life quality. Parkinson’s symptoms can include a noticeable drop in speech volume, as well as an effect on the way in which one speaks. (dysarthria: when the muscles in the lips, tongue, vocal cords, and diaphragm do not work together to help one speak clearly – often causing words to run into one another and not be distinctly recognized.)

There is a FREE program available for use at home on an iPad that can help with improving speech volume and clarity! Please note that an iPad iOS 7 or greater is required for this application. Read more here!


REMEMBER BEING TOLD TO STAND UP STRAIGHT? SO WHAT IS FTF?

“Poor posture is a hallmark feature of Parkinson’s disease. This stooped positioning has been associated with increased muscle rigidity or stiffness. The typical Parkinson’s posture includes: forward head, rounded shoulders, increased thoracic kyphosis, increased flexion of the trunk, and bending of the knees.”

How can poor posture affect you?

  • Difficulty speaking clearly and loudly
  • Difficulty with moving your neck and upper extremities
  • Change your perception of your body’s position in space
  • Can alter balance and lead to falls from having your weight shifted forward
  • Decrease strength of postural muscles
  • Headaches and TMJ pain
  • Difficulty swallowing

(Meredith Defranco, “Parkinson’s Treatment Tips” published March 1, 2012, Norman Fixel Institute for Neurological Diseases at University of Florida Health)

A May 22, 2019 article in Parkinson’s News Today offers insight into assessment results from a controlled study that utilized a four-week trunk-specific, posture-correcting rehabilitation program: “Forward bending of the spine, known as disease-related forward trunk flexion (FTF), is a common complication observed in patients with Parkinson’s disease. FTF can result in permanent postural imbalance, pain, frequent falls, and irreversible deformities. Early detection and rehabilitation efforts through focused physical therapy can help in reducing pain and delay motor symptoms progression. However, information is limited on FTF rehabilitative efforts in Parkinson’s patients.” – Vijaya Iyer Read more here

A POSSIBLE NEW “GAIT WAY” – SPINAL CORD STIMULATION

If you can relate to others who experience episodes of having your feet “freeze” in place while you’re on your way elsewhere, you likely also have postural instability, meaning your balance is impaired. Quoting from an online article from the Parkinson Foundation, “…these symptoms can cause falling, resulting in a multitude of injuries, a loss of personal freedom, caregiver stress and a reduction in the quality of life (Pirker & Katzenschlager, 2017; Samotus, Parrent, & Jog, 2018). …Current PD medications, therapies or surgical procedures do not effectively address this debilitating unmet need. This lack of options might be changing, due to an intervention called spinal cord stimulation (SCS).”

Information contained in the study is so worth reading and discussing with your movement specialist or neurologist. Don’t pass this by! The results of this study may provide a new gateway to a new “gait way”! READ MORE HERE

100 People with Parkinson’s Collaborate to Write Personal Life Experiences

A Parkinson’s diagnosis creates a challenge to learn as much as possible from expert physicians and therapists. It also fosters emotional worry and curiosity about how to move forward with life without a clear road map to follow.

As Parkinson’s is NOT a one-size-fits-all medical condition, a natural direction most people eventually take is to search for books and articles to read, and many excellent resources are available. Quoting a description of one such book:

The Peripatetic Pursuit of Parkinson Disease by the Parkinson’s Creative Collective provides information and inspiration to improve life with PD. The Parkinson’s Creative Collective compiled this anthology of experiences containing articles by over 100 experts on PD — the patients themselves. They speak with compassion and honesty to those newly diagnosed, as well as to those who have lived with PD for years. Personal narratives help the reader understand the emotions and remember the facts.”

From 45 reviews, one in particular stands out:
Written as a collaborative effort by people who are dealing as PwP’s (People with Parkinson’s), (the book) had enormous credibility for me and lifted me out of my ignorance and serious depression. The one thing that I have found most supportive over the few months since I was diagnosed is not the ‘encouraging words’ and sympathy and love I have received from friends and family…. it is association, face to face, with others who have Parkinson’s, and reading about people dealing effectively and courageously with Parkinson’s. This book really does this…”

Some reviewers advise that this is a collection of inspirational, personal stories to be read in small sections and experienced slowly, and not try to understand and apply all of its wisdom too quickly. “As a person with Parkinson’s, I can relate to the stories and worries and advice given here… there’s a lot here to absorb, so don’t try to gulp it all down at once. Sip it slowly and thoughtfully.”

An online search of all libraries in our north-of-Boston area did not reveal any available copies. We are including the following link to access the book section on Amazon to read more about The Peripatetic Pursuit of Parkinson Disease and 45 positive reader reviews.

https://www.amazon.com/gp/product/0989326608?pf_rd_p=f3acc539-5d5f-49a3-89ea-768a917d5900&pf_rd_r=N96R1V5BK7MR426DDGF5

HONORED AS COMMUNITY GRANT RECIPIENT BY THE PARKINSON FOUNDATION!

We are proud to announce that we are among nationally recognized Parkinson’s organizations and programs in 38 states who were recently awarded 2019 community grants!

Parkinson’s Foundation community grants further the health, wellness and education of people with Parkinson’s disease across the nation. In April 2019, the Foundation distributed $1.5 million throughout 111 community-based grants that fund education and outreach programs, along with local research initiatives, that address unmet needs in the Parkinson’s community. Read more to view our fellow recipients, listed state by state.

Receiving this grant enables us to partially fund our upcoming 8-week Parkinson’s percussion series with MedRhythms Music Therapy of Boston, and offer the program free of charge starting May 1st at the Danvers Community YMCA!

This honor is shared with our wonderful team of caring, creative instructors and with each participant who attends classes with an “I-will-do-as-much-as-I-can” attitude.

A PARKINSON’S AWARENESS MONTH REMINDER…A DIAGNOSIS SHOULDN’T DEFINE US!

We’re so much more than the label “Parkinson’s sufferers” implies. Poignantly quoted on the Voice Aerobics website by organization founder and friend Mary Spremulli, now-deceased blogger Kate Kelsall – herself diagnosed with Parkinson’s disease – described her feelings about being referred to in just medical diagnosis terms.

“When someone describes me only in terms of my medical diagnosis as having Parkinson’s, it doesn’t describe me as a person. The human element is overlooked, and I feel devalued. Too often, disability-related labels are used unnecessarily to describe a person. A disability is NOT the most important descriptor of any individual. Defining a person as though the disability comprises the entirety of the person often segregates and isolates the person and fails to recognize the humanness.”

“Labeling may cause others to overly focus on the visible manifestation of the disease while failing to connect to you, personally.” –Mary Spremulli, Voice Aerobics founder – Products and Programs that Support Voice Use
(https://voiceaerobicsdvd.com/parkinsons-advocacy/parkinsons-sufferers-and-other-words-we-hate-to-use/)

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