WHY AM I SO DIZZY AND LIGHTHEADED?!

“Healthcare providers say that hallmark signs of nOH, including dizziness, lightheadedness, blurred vision, and feeling faint after standing, can occur at any stage of Parkinson’s disease. People may believe that their nOH symptoms are part of their Parkinson’s and something they have to learn to live with. It’s only once a healthcare provider connects the symptoms of being lightheaded or faint after standing to a drop in blood pressure that an nOH diagnosis may be possible.” (https://www.nohmatters.com/how-neurogenic-orthostatic-hypotension-occurs/parkinsons-dizzy)

Keith and Linda Hall’s lives are affected by Keith’s nOH symptoms. Read here about what’s happened to them and what steps they’ve taken to live with a difficult but manageable diagnosis.

Lifestyle changes for Keith and others include:*
Drinking more water
Adjusting the amount of salt in your diet
Avoiding carbohydrate-heavy meals, caffeine, and alcohol
Wearing compression stockings or an abdominal binder
Elevating the head of your bed
Slowly rising when standing
Using caution when walking or changing positions if you feel dizzy
Getting regular exercise
(*Ask your healthcare provider for guidelines and advice on lifestyle modifications that would work best for you.)

An upcoming online program can be accessed through the following website, and we encourage you to take the time to register and view it! https://mailchi.mp/d4ee9a4aa1b0/parkinsons-dizzy-or-lightheaded-these-could-be-clues-to-noh-590325?e=2512ff4f1d

 

SHIFT PERSPECTIVE TO CHANGE FOCUS…WHAAT??

When Life Seems Out of Focus

In a recent column that appears in Parkinson’s News Today on line, a regular contributor referred to as “Dr. C.” relates his experiences as he navigates his journey through life with Parkinson’s. From his latest column:

“I am a retired professor and research scientist, along with being an artist, philosopher, writer, therapist and mystic. I am also a husband, father, grandfather, master gardener and Vietnam Vet. All of these roles influence how PD interacts with my life’s journey.The ability to shift perspective may improve our ability to adapt to stressful times and to become more resilient, and therefore more open to new possibilities. The shifting of perspective causes us to shift our focus to a new intention, a new possibility. I hated exercise, and my intention was to avoid it...” 

(click to read more:

WORKOUT FOR THE BRAIN…ALTERNATING HAND RHYTHMS

Our 8-week percussion series, led by MedRhythms music therapy instructor Stian Berg Hansen, focused not only on the drumming itself, but also on using rhythm to engage listening, memory, and motor coordination.

During earlier class practice, Stian had the group use alternating drumming hands and clapping movements. This wasn’t always easy at the outset of our time together, especially when Stian also added in having us increase and decrease speed and volume over the weeks that followed. But we improved regularly over time! We also learned how to use boomwhacker instruments, which are colorful plastic tubes of varying lengths and tones of the music scale. Eventually, we divided our circle into three separate sections, with each group of five or eight players beating a different rhythm. The end result?? A pretty rhythmic, integrated sound!

We were able to provide this most recent free music experience through the support of a community grant from the national Parkinson’s Foundation and the generous use of space provided by the Danvers YMCA. From the alternating facial expressions of both focus and smiles, we feel the program was well received by the participants and their care partners!

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

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