The Merriam-Webster dictionary defines the word marathon as “an endurance contest” and “something characterized by great length or concentrated effort”. Keith Hall and his son Max are both participating in marathons. Keith was diagnosed with Parkinson’s when Max was young and playing Little League baseball. Life kept racing forward with all of its busyness, but the favorite games of “catch” with one another started to slow down. Parkinson’s challenges began requiring a concentrated effort to stay motivated and keep moving, which has become Keith’s ongoing commitment to himself, his family, and hundreds of North Shore and Cape Ann residents with Parkinson’s who attend the classes and programs he and his wife, Linda, started in 2013.
Over the years and never ones to idly sit on the sidelines and allow Keith’s Parkinson’s condition to bring him to a standstill, Keith and Linda entered their own life’s marathon together as a team. As it is for too many others with Parkinson’s, living well and retaining as much independence as possible becomes its own endurance contest. Keith is the first to encourage getting in the fight and make every punch count!
As for Max, he still loves to watch baseball with his dad on television, and is proud to have both of his parents in the stands when he’s coaching young players during practices and games locally and in New Hampshire and Maine. However, on November 3rd, Max will be honoring his dad by temporarily switching sports and running instead in his first New York City Team Fox marathon race to support the Parkinson’s research being done at the Michael J. Fox Foundation.
Please consider supporting Max as he challenges himself with the same spirit his dad shows every day!
“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.)
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...”
Our 8-week percussion series, led by MedRhythmsmusic 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!
“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
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 tocognitive 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
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”!
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.
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!
“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
(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 IyerRead more here