Benefits of Cycling for Parkinson’s Disease

Time and again, I’m struck by how resilient many in this community are – facing down adversity while arming yourself with useful tools – such as education, community, support, all while embracing lifestyle modifications to help manage symptoms and improve quality of life. One such lifestyle modification that has been shown to be beneficial is regular exercise, and in particular, bicycling.

You might think that cycling as a form of exercise is counter intuitive for anyone who may be prone to balance concerns – but this low-impact aerobic exercise has many potential benefits for people with Parkinson’s disease. Add in appropriate safety features and adaptive equipment and you might be ready to try a spin around the neighborhood!

Improved Motor Function

One of the hallmark symptoms of Parkinson’s disease is difficulty with movement, which can manifest as stiffness, rigidity, tremors, and slow or shuffling gait. Research has shown that cycling can improve motor function and alleviate some of these symptoms. For example, a 2011 study published in the journal NeuroRehabilitation found that cycling improved gait and reduced tremors in people with Parkinson’s disease. Another study published in the Journal of Sports Sciences found that cycling at high intensity actually improved balance and reduced falls in people with Parkinson’s disease.

The benefits observed are likely due to several factors. First, cycling provides a low-impact workout that is gentle on the joints and muscles, which is important for people who may be more susceptible to injury. Second, cycling requires coordination and balance, which can help improve these skills and, finally, the repetitive, rhythmic exercise is thought to help improve motor control and muscle memory.

Increased Cardiovascular Fitness

In addition to improving motor function, cycling can also help improve cardiovascular fitness. Cardiovascular fitness refers to the ability of the heart and lungs to supply oxygen and nutrients to the muscles during physical activity. Improved cardiovascular health has several benefits for people with Parkinson’s disease. For example, it can improve endurance and energy levels, which can help with daily activities such as walking, shopping, and household chores. It can also reduce the risk of fatigue and improve cognitive function, including attention, memory, and executive function.

Mental Health Benefits

Exercise in general has a positive effect on mental health, and cycling is no exception. Regular exercise can improve mood, reduce anxiety and depression, and enhance cognitive function. Bonus points for being outdoors where nature also exerts her positive influence! Whether cycling solo or in a group, participants experience a sense of independence and freedom, which can boost self-esteem and confidence.

Social Interaction

Social isolation and loneliness are common among people with Parkinson’s disease, and regular exercise provides an antidote with opportunities for social interaction and support. Cycling clubs and events provide an opportunity for people with Parkinson’s disease to connect with others who share similar interests and challenges. Group cycling events can also provide a sense of camaraderie and motivation to stick with an exercise routine.

Getting Started

If you are interested in trying bicycling as a form of exercise for Parkinson’s disease, it’s important to first check with your healthcare provider to ensure the activity is safe and appropriate for you. Once you get a green light, you will want to start slowly and gradually increase intensity and duration. Remember, no one starts anything new as an expert!

Choose a safe and comfortable bike that is appropriate for your fitness level and abilities. A recumbent bike may be a good option for people with balance or mobility issues, as it provides a low-impact workout in a seated position. Many bike shops carry recumbents or adaptive modifications and may provide a trial or short-term rental while you explore what works best for you..

In addition to choosing the right bike, please give care to assemble and wear appropriate safety gear, such as a helmet and small repair kit, and to follow traffic rules and regulations. Cycling in a group or with a partner can also provide an added layer of safety and social support – we hope to see you on the road!

Resources:

“The effects of cycling on gait and tremor in Parkinson’s disease” by Alberts JL et al. published in NeuroRehabilitation in 2011.

“Aerobic exercise improves mood, cognition, and language function in Parkinson’s disease” by Ridgel AL et al. published in Neurorehabilitation and Neural Repair in 2012.

“Effects of exercise on non-motor symptoms in Parkinson’s disease” by Schenkman M et al. published in Clinical Therapeutics in 2013.

“Cycling for Parkinson’s disease: does aerobic intensity matter?” by Ellis T et al. published in the Journal of Sports Sciences in 2013.

“Exercise in Parkinson’s disease: an overview of the evidence” by van Nimwegen M et al. published in Journal of Parkinson’s Disease in 2011.

Amy Lavallee

I was 33, pregnant with my third baby, and started noticing a twitching sensation in my right toe. I chalked it up to stress and pregnancy.

A year later I heard the dreaded words, “Its Parkinson’s.” I left the doctor’s office in a fog. I was so lost with absolutely no idea what to do next or where to go. I’ve been on a roller coaster – feeling like I’m never going to be the same person or feel normal again. This is a hard realization.

Parkinson’s doesn’t care how old you are. It doesn’t care about family history or current health. It just shows up, uninvited and isolating. Parkinson’s Resources ensures no one has to face this disease alone.

When I was ready to face my new reality I started searching for support groups, blogs, and resources online – so much was remote and sketchy. I came across PRO’s Facebook page and started following their events.

When something terrible happens in life, all of your loved ones are there to help. “Let me know how I can help,” is the most thoughtful but useless phrase during that time. You love and appreciate the sentiment. You know you need help, but you just don’t know what kind of help you need. PRO knows the help we need and they provide it. I feel like the staff at PRO are the big comforting hug you need sometimes. PRO became that person for me.

There are so many wonderful Parkinson’s organizations that focus on research, awareness, and health. They do good on so many levels, but you need a group that is ready to join you at a personal level that can hold your hand, get information for you, and direct you to local fitness classes, pharmacies, or transportation. I get a lot of good information on a national level but it is PRO that has provided the most help and support to me. They do it with love, sympathy and empathy. They know how I feel and how to handle the situation.

My first year with my PD was hell, I was alone, frightened, and lost. I found PRO. They gave me the courage to get involved. Now I am 35 years old and know I am not alone. I have help and a path to the future.

Patterned for Parkinson’s: Resources

Contributed by Holly Chaimov

Whether you consider yourself a fashion maven or not, style and how we dress is an expression of self. Colors chosen, comfort, ease and fit – all combine to impact mood, send a message, and support our ability to complete daily activities. In the visioning and planning for our first Patterned for Parkinson’s adaptive showcase, we uncovered some exciting resources. We met talented designers, read blogs about inclusive design, and had our eyes open to the growing numbers of businesses and individuals who now include adaptive features in an effort to be inclusive for all. We hope you find your own inspiration to think broadly and incorporate some of what we uncovered in your own approach to independent dressing. (And, please periodically check back as we update and refine these resources for you!)

Parkinson’s: Stages and Solutions

Independence and the ability to seamlessly make choices in your wardrobe to fit your mood and activities varies immensely as people diagnosed with Parkinson’s advance along a continuum of disease progression. One goal with this project was not only to share information about clothes that are designed specifically for folks with a disability, but also to help our community identify and shop for “mainstream” features that can be found a most any retailer if you just know what to look for. To facilitate our conversations with students, sponsors and even each other, we started by creating an education tool – a chart organized by stage of PD progression, listing common symptoms and possible solutions to look for in a garment. You can see a copy of this here.

Inspired Blogs and Who We Follow

Getting dressed. In the past months many of our clients have shared their personal frustrations and challenges. Buttons. Zippers. Shoes. And Underwear. We heard a lot about the struggle with underwear! We could probably launch a whole series or sitcom documenting the trials and failures (some successes) of looking great, feeling confident and dressing a body that doesn’t always want to cooperate. If you are curious and want to see what others have to say about dressing independently, with a movement disorder, disability, or just plain DRESSING, here is a listing of folks we’ve been following….

Designing For All

As we stepping into the journey of learning more about fashion, design, and dressing bodies of all abilities – we were greeting enthusiastically by many cheerleaders. Early on, our friends at Zappos Adaptive embraced our vision for a Showcase of Adaptive design and signed on to style several of our client models. But, their spirit of generosity didn’t stop there. They took their commitment next level by introducing us to some of their key partners – Billy Footwear, IZ Adaptive, Smart Adaptive and Reboundwear to name a few. We also found that a growing number of national brands offer adaptive lines of clothing. We found solutions readily available at Target, Lands End and JC Penny to name a few. Lesson? When you are shopping or needing to make your next purchase for clothing or footwear, be sure to ask or search for “Adaptive”, you might be pleasantly surprised.

Of course, we worked closely with many smaller brands and even individual designers. While we couldn’t showcase all the products we were excited by, we did keep track and have a list of possible retailers, websites and Etsy shops for you to explore!

Now tell us…. What is your biggest challenge or favorite innovative solution? We can’t wait to continue this conversation with you!

Medication Assistance Programs

Contributed by Peggy Rost, CSWA, MPA

Many people living with chronic conditions like Parkinson’s disease find themselves taking several prescription medications. Even with insurance, co-pay costs can add up and become quite expensive. Those on Medicare with significant prescription costs might find themselves falling into the “Donut Hole,” which sounds like a treat but actually refers to a gap in prescription coverage.

The good news is that there are commercial, federal, and state programs that can help reduce the financial burden of medications. Below are some programs and resources that may be helpful.

Good RX

Good Rx is a website where individuals can type in the name of their prescription as well as their current location to find the lowest prices available at retail pharmacies in their area. Good Rx also offers coupons for certain medications and has a discount card that anyone can order. Prices and discounts on Good Rx may be cheaper than insurance co-pays and the service is free. To access savings at Good Rx, go to www.GoodRx.com.

Needy Meds

Needy meds is also a free service and in addition to providing information on lowest prices at local pharmacies, the site will also let an individual know if there are prescription assistance programs available for brand name drugs. Needy Meds also provides information on pharmacy discounts on generic medications, as well as informational videos for medications. Visit www.needymeds.org.

Patient Assistance Programs

As mentioned above, Needy Meds serves as a central hub for finding assistance programs for brand name drugs. These programs can also be found on pharmaceutical companies’ websites. For example, when searching for financial assistance for Rytary, one can go to www.Rytary.com and find information on the “My Rytary” Patient Support Program and learn from a care manager about how they can save on prescription costs.

Senior Health Insurance Benefits Assistance (SHIBA)

Medicare recipients, individuals over the age of 55, and disabled persons of any age are welcome to contact a team of certified volunteer counselors at the SHIBA program for help making informed health insurance decisions. SHIBA volunteers can help individuals select a Medicare Part D plan that best meets their prescription needs to avoid gaps in coverage. To connect with your local SHIBA team, visit www.shiba.oregon.gov or call 1-800-722-4134.

State Prescription Drug Programs

Both Oregon and Washington offer prescription discount cards for all residents, regardless of age or income. The discount card is available to those who are uninsured or underinsured for prescription drug coverage. To enroll in Oregon’s program, call 1-800-913-4146. To enroll in Washington’s program, call 1-800-913-4146.

Questions about any of these programs? We’re here to help. Contact PRO’s Social Worker, Peggy Rost at 503-496-3174 or Peggy@Parkinsonsresources.org.

Finding Relief From Dry Mouth

Contributed By Reva Barewal, DDS, MS, Dipl. ABDSM

Everyone experiences dry mouth. That cotton ball sensation in your mouth that makes your tongue feel twice its size. Speech becomes an effort and swallowing difficult. Most healthy adults can trace back the cause to the common culprits- alcohol, caffeine or smoking. Taking a few restorative glasses of water is often the cure. However, 13-28% of older adults face this as a chronic issue, called xerostomia, every day. This number can increase to an alarming 60% of residents in long term care. Loss of quality of life stemming from reduced food enjoyment is a reality. Also, loss of oral health and ultimately overall health raises the need for us to share information regarding this condition across disciplines.

I am a prosthodontist, and French culinary chef with a breadth of research interests ranging from dental implants, geriatric dentistry, and product innovation in the area of therapeutic snack foods for dysphagia. In my private practice, I have to manage many patients with severe xerostomia. They are so easily identified as I can always find a water bottle sitting in their lap, ready to soothe their parched mouths. A common belief is that salivary hypofunction is an age-related change. This is not true at all. It is largely caused by health conditions, hydration and medication. What we will explore is how does the presence of dysphagia (difficulties with swallowing) and xerostomia affect the individual and what can we do to help them.

Dry mouth can result in an overall reduction in quality of life. Sufferers can experience poorer retention of dentures and more denture sores, avoidance of spicy foods and acidic foods, altered speech, swallowing and taste.

As far as oral health, the impact of xerostomia is significant. A loss or reduction of saliva increases risks for:

cavities and tooth decay
periodontal disease
food retention on teeth, tissues and possibly dentures.

These factors alone will increase the patient’s risk of aspiration pneumonia. But when xerostomia occurs in combination with dysphagia, the risk is multiplied. Dysphagia sufferers have an increased risk of hospital readmissions for pneumonia and aspiration pneumonia. Dr. Donna Graville, director of the NW Center for Speech and Swallowing at OHSU shed some light on the added concern with xerostomia. “A patient can be so dry mouthed that crackers turn to dust with chewing and can create a real choking risk in the dysphagia population.”

Do people have dysphagia & xerostomia?

To answer this, we need to understand the main conditions leading to dysphagia in the elderly. These are:

Stroke
Progressive neurologic disease
Dementia
Head and neck cancer
Traumatic brain injury

Health Conditions Leading to Xerostomia:

Parkinson’s Disease
Depression
Brain Tumor
Stroke
Neurosurgical Operations
Alzheimer’s disease
Irradiation
Excision
Dehydration

It is hard for a dysphagia sufferer to escape the over 500 medications that cause xerostomia – otherwise known as xerogenic drugs. A classification of xerogenic medications found commonly in the medicine cabinet of a dysphagia sufferer are:

Antihistamines: ex. Benadryl, Claritin, Zyrtec

Antidepressants: ex. Zoloft, Flexaryl and Elavil.
Antiemetics: ex. Anzemet, Domperidone).
Antihypertensives: diuretics, ACE inhibitors, calcium channel blockers, beta blockers
Antiparkinson: ex. Levodopa, Artane
Antispasmodics: ex. Dicyclomine.
Sedatives: ex. Amytal, Valium, Lunesta
Analgesics: opioids ex. Morphine, cannabis
Chemotherapy agent: ex. retinal
Antireflux agents: proton pump inhibitors ex. Omeprazole

Treatment of Xerostomia

There is a lot of frustration for the patient and the clinician in developing a treatment for dry mouth as many times we often cannot cure this problem but do our best to reduce the side effects. If the issue is dehydration, then increasing fluid intake will eliminate the problem. This is an easy solution, but rarely the only solution needed. If the cause is medication, a discussion with the PCP regarding drug scheduling, dosages or changes in medication would be helpful. Palliative support is often necessary though and usually requires a multifaceted approach. Please keep in mind that saliva flow naturally reduces with age.

Dietary: Patients on a TMD should also avoid spicy or acidic foods if they experience burning discomfort. However citrus notes in foods can encourage saliva flow. Meltable foods, such as Savorease crackers, can provide crunchy texture yet still dissolve in dry mouth. Alcoholic beverages, caffeinated beverages, and tobacco use should be reduced. A high fluid intake should be encouraged unless it is medically contraindicated. Tooth brushing after every meal is necessary.

Environmental: Maintenance of optimal air humidification in the home is useful, especially during sleep, as is using vaseline to protect the lips. Saliva substitute gels are often used to coat the oral mucosa and reduce frictional irritation. These can be very useful during sleep when salivary flow can drop to zero.

Dental: Regular visits to the dentist, whether they are dentate or edentulous are important to improve function of dentures, prevent advancement of disease. Oral exams should include an evaluation for the presence of candidiasis. A home-based fluoride preventive program should be incorporated for dentate individuals. An increased frequency of hygiene appointments can also serve to educate on prevention and reduce risks of periodontal disease and dental caries.

Saliva stimulation: Cholinergic drugs such as pilocarpine may be tried, unless medically contra-indicated.

Temporary palliation: Non-alcohol based mouthwashes are useful to alleviate oral discomfort. There are numerous artificial saliva products currently marketed for non-prescription use by patients that can be trialed. If the salivary gland is still functioning, use of xylitol gum can stimulate saliva flow.

The lack of normal salivary function can change texture modification recommendations by the SLP. Recognition of the effects of xerostomia and the additive risks for aspiration pneumonia can encourage more cross-discipline communication between speech language pathology and dentistry as well as increased education for the patient and care givers.

References:

Barbe AG. Medication-Induced Xerostomia and Hyposalivation in the Elderly: Culprits, Complications, and Management. Drugs Aging. 2018;35(10):877-885. doi:1007/s40266-018-0588-5
Barewal R, Shune S, Siegel S. The Oral Dissolution Rate of Transitional Snack Foods in Adults with and without Dry Mouth. In press, 2019.
Humphrey SP, Williamson RT. A review of saliva: normal composition, flow, and function. J Prosthet Dent. 2001;85(2):162-169. doi:1067/mpr.2001.113778
Pace CC, McCullough GH. The association between oral microorgansims and aspiration pneumonia in the institutionalized elderly: review and recommendations. Dysphagia. 2010;25(4):307-322. doi:1007/s00455-010-9298-9
Scully C. Drug effects on salivary glands: dry mouth. Oral Dis. 2003;9(4):165-176.

Learn more

Reva Barewal, DDS, MS is a clinical assistant professor at Oregon Health Science Center in the department of Pulmonology and Critical Care. She is a prosthodontist, and French culinary chef. She owns a multi-disciplinary private practice in Portland, OR. Her research interests include understanding the influence of transitional foods on food enjoyment and nutrition levels for individuals with dysphagia. She is particularly interested in better understanding the behavior of transitional foods in the mouth and the effects of masticatory function on dysphagia. Her passions lie in improving food enjoyment for all individuals and has created a line of snack supplements for people with swallowing problems that are savory and delicious. Please visit www.savorease.com to find out more.

Parkinson’s and the Eyes

Contributed By Carol Pfeil

Eyesight is an astounding process. My eyes pick up light, and depending upon how close or far away the object is, the lens changes shape, shoots the image back to the retina, then the image of that object is sent via the optic nerve upside down to the brain where my brain flips it and gets the message that a cute, non-house-broken, 13 pound black and white Shih Tzu with a red bow, named Obi Wan, has just jumped onto my lap.

However, with PD’s breakdown in the production of dopamine in the mid-brain or gut, it is common to develop a number of eye movement difficulties. These problems may include dry eye due to a decreased blink rate with PD; eye movements that become slow or dysfunctional causing the eyes to not converge normally, or track. Visual hallucinations are also possible. Any one of these things, or all, can affect one’s ability to read, watch TV, or walk (which could warrant a fall) – that terrible 4 letter word.

We know that everyone’s PD manifests differently, and that includes eye movement issues as well. Most of us would agree that knowledge is power and concerns or problems are usually less frightening when discussed, named (if possible), and analyzed by an experienced medical professional. (Additionally, if I had a choice, I would choose one with a sense of humor.)

One such experienced and humorous physician, Dr. Scott Stevens, a Bend Ophthalmologist, recently taught us some anatomy-class-vocabulary and detailed some important information about PD’s effect on the eyes through a recent PRO webinar. (View the recording at youtube.com/user/ParkinsonsResources.) The very good news is that often a trip to an eye doctor can result in some very good solutions or at least accommodations for the problems. Some of these mitigators may include near or distance corrective glasses (or prisms added to glasses), walking assistance devices, or eye drops/ointments.

The most reported and common eye problem for those with PD is dry eye or Kerstoconjunctivitis Sicca. These challenges are often due to:

A decreased blink rate (4-6 times a minute vs the non-PD 12-18 blinks per minute causes eyes to be drier)
Blepharospasm (which causes abnormal and involuntary spasms of the eyelid resulting in eyelid closure),
Apraxis of the eyelid opening (results in difficulty opening the eyes) and
Blepharitis (inflammation of the eyelid margin)

These conditions are very common and are often eased with artificial tear eye drops or ointments. If you have tremor, the ointments may be your best bet. Other recommendations for dry eye treatment include applying a damp washcloth to the eyes and covering that with a gently microwaved seed infused sock (or other warmed pad) for a few minutes twice a day to increase eye moisture.

Other eye movement difficulties with PD are saccades (or eye movement). Saccade problems include:

Inability to use both eyes at once to see or follow a moving object (Accommodative paresis or convergency insufficiency)
Difficulty maintaining fixation on an object (impaired smooth pursuit)
Slowed response to moving the eyes toward a new target (prolonged saccade latency)
Eyesight undershooting a new target when your eyes move (hypometric saccades)
Impaired ability to think and orient in different dimensions (visuospatial dysfunction)
Difficulty moving the eyes back to a remembered target (impaired antisaccade)

This eye movement problem as a result of the saccades makes it difficult to read with both eyes working together for any extended period of time. It may also cause a person to experience balance issues, which can make the correction a tricky fix. Treatment may include single vision glasses for reading or changing the prism in the lens to mitigate the visual problems. Dr. Scott’s “simple” answer? Read with one eye – or try using a ruler to keep your place on the page, choosing large print books or an I-pad/e-reader for easier viewing.

Accommodations for the balance issues include distance glasses (not bifocals) and a cane or walker to maintain one’s posture, as not seeing in 3D often causes objects to look flat and navigating space can be problematic.

Lastly, it is common for those with PD to experience visual hallucinations, impaired color discrimination, and decreased contrast sensitivity.

With impaired color discrimination, colors may appear muted, but a person doesn’t usually test positive for color blindness.

With decreased contrast sensitivity, it’s difficult to see well in low light.

With impaired depth perception, things like steps may not be seen, resulting in falls.

With visual hallucinations, a person may see things that aren’t really there or experience double vision.

Because many of these symptoms related to color, contrast, depth, hallucinations, and double vision can exhibit similarly to a cataract condition, it can become difficult to know what’s caused by the PD and what’s unrelated. For those with PD experiencing these symptoms, creating special prisms in eye glasses can often allow someone to read more successfully.

The importance of a regular and thorough eye exam, along with discussion and evaluation by an Ophthalmologist, is important in increasing one’s quality of life with PD. At PRO, we believe that quality of life is always worth pursuing. Armed with knowledge, hope, and a little courage, keep moving forward and let us know how we can do to support you. Perhaps it doesn’t apply outside of the British political arena, but as the idiom says, “The eyes (ayes) have it. Salud!

Originally published in the July 2019 Parkinson’s Perspective

Learn more

Learn more about Parkinson’s disease and the eyes by watching PRO’s webinar by Dr. Scott Steven’s. Find this topic and others when you visit our YouTube channel.

Ping Pong for PD

Contributed by Carol Pfeil

Whether you know the game as Whiff-Waff, Pim-Pam, Flim-Flam, Gossima, Netto, Parlor Tennis, Table Tennis, or Ping Pong – it’s all the same, at least in its English origins as a brilliant after dinner substitute activity for lawn tennis. Actually, rules were only created in 1926 after Europeans had played the game for 35 years. Imagine the English without a proper set of rules, but instead just relishing in a ‘jolly good time’. Books stacked high enough to function as a net, a cigar box top as a paddle, and the round part of a champagne cork as the ball were the original equipment. Thankfully, the game has evolved quite a bit since its origins.

Some may view Ping Pong as more of a ‘Go Fetch’ game, as a fair amount of time ‘playing’ involves chasing stray balls after a more experienced player slams another one right at the corner – but not if you’re one of the 300 million people who play it worldwide. Ping Pong took 100 years to gain the reputation as a legit-enough sport to become an Olympic event in 1988. From hipster table tennis parlors in Portland, independent Ping Pong clubs around the Northwest to PRO headquarters backroom in Beaverton, many seem to enjoy and appreciate the brain enriching activity. Who knew that the skills involved in Ping Pong can greatly benefit people with Parkinson’s?

More Than A Game

In a 2013 Lancet medical journal article, researchers liken the brain skills demanded from tango dancing, tai chi, and boxing to those found in Ping Pong. (I don’t know about you, but I would rather be seen being a freshman ping pong player in jeans and tennies than an uncoordinated tango dancer in stilettos and a low-cut, short dress.) World renowned Psychiatrist Daniel Amen, M.D. quips about table tennis – “Golf is good. Tennis is terrific. Table Tennis is the best sport in the world.” Why?

Think about some of the classic PD symptoms, such as imbalance, slowed thinking/strategy skills, slowed gross and fine motor skills, tremor, anxiety, depression, and oftentimes social isolation. Brain research has shown that Ping Pong stimulates 3 different parts of the brain that effect balance, generation of new brain cells, neuroplasticity (new neuropathways being carved out due to vigorous activity), and blood flow to the brain. The truth is that any aerobic activity will give you most of these results as well, but Ping Pong ranks high in the areas of the brain primarily due to anticipating and responding quickly in a small, 9X5 foot area.

In that small play area, a ping-ponger, by utilizing the prefrontal cortex portion of the brain, anticipates where the ball might land and then stimulates the cerebellum resulting in the fine motor control needed to hit the ball where it needs to go. A third area of the brain, the hippocampus, is also stimulated when a player engages in aerobic exercise from the fast-paced speed of the game. As exertion goes up, this part of the brain begins to create new brain cells and that can continue throughout adulthood.

Recognizing that playing Table Tennis was helping to improve some of their PD symptoms, two New Yorkers with PD birthed a program in 2017 they coined Ping Pong Parkinson. They organized the program to include warm-up exercises and Ping Pong technique before beginning the game, then partnered each player with a volunteer leader, rotating every 5 minutes, and ending their program with video footage of a Ponger’s skills and progress. (Not going to lie – that sounds terrifying.) Good news! Ping Pong could become your next great obsession and it could be fully justified with its brain benefits, unless you’d rather wear stilettos.

Organizing Support

Contributed By Heather Balducci

Living with Parkinson’s can make recovery from illness, injury or surgery a long and challenging road. Care partners of people with PD also need extra support when faced with their own health setbacks in order to ensure that they recover well and have sufficient time to rest and recuperate before returning to their caregiving roles.

It can be a challenge to ask for support from friends and family when faced with an unexpected need, and organizing support can also be difficult as well. Most people come to realize that their loved ones and acquaintances are more willing to help than they had expected.

Here are some steps you can take, as a Person with PD or care partner to best prepare yourself for a planned or unexpected surgery, illness or injury.

Think of specific tasks that will help decrease your stress level. People often are met with loved ones saying “let me know if there is anything I can do to help,” and having a specific and helpful request in mind can help you direct people in a way that allows them to support you and meets your need. Examples of tasks could include home-cooked meals, short social visits, small tasks around the home, grocery store runs or rides to doctor appointments.

Consider using a website like “Lotsa Helping Hands” (www.lotsahelpinghands.com) to organize support. This free site allows users to set up a calendar of care tasks, send the calendar and their request to loved ones, and communicate about their progress with those who are offering to help. If you are not particularly tech savvy, see if someone can set up and manage a care page for you.

When hospitalized, many people need to spend time in a skilled rehabilitation facility before going home. Be sure that you are talking with the hospital staff assisting you in planning for a rehab stay. While in rehab, keep in mind that you may have a lot of free time, and it may still be helpful to arrange social visits with friends and family to help boost your mood.

Find out about local services you could use for meals, in home care, house cleaning, or any other needs you may have. Most communities have a range of services that cover these needs, and a good place to start in finding these is your local Aging and Disability Resource Center at 855-673-2372 (Oregon) and 888-637-6060 (SW Washington). Also, please consider calling the Parkinson’s Resources of Oregon helpline for ideas and support in connecting to resources in your community.
If you don’t already have an “Aware in Care” Patient safety kit – consider ordering one from the Parkinson’s Foundation (they’re free!). This kit is a great way to keep your medication information, emergency contacts, and information on Parkinson’s available in one place, and it also provides information on the importance of medication timing and avoidance of medications that complicate PD symptoms. Having a kit available and prepared can help you and your loved one minimize any complications associated with going to the hospital, ER, or a new medical provider.

Renegotiating Rituals

Contributed by Libby Kennard, MA Program Coordinator

November, 2020. During the past year, people have felt disoriented by the quarantine with one day running into the next. I have heard some compare every day to a Saturday or to a rainy day with nowhere to go. Missing dinners with friends, going to the gym, attending worship services, birthdays, graduations, and yes, funerals, separate us from our family and our community. Our rituals anchor us to place. They bond us together marking the passage of life, the passage of time.

A ritual is simply an act or series of acts done in a particular situation and in the same way each time. (Merriam-Webster’s definition). Whether it is your own personal daily ritual, a family tradition or a cultural ritual, these repeated patterns of behavior serve an important purpose. Humans are social beings and have always established customs to bond people together. Rituals help us regulate our emotions and give us a sense of control partly because they are predictable. We come together for milestones, for hardships and for camaraderie. When there is a baby on the way, we bring gifts and play silly games. When football season starts, fans have their gatherings whether it is at someone’s home, a sports pub or at the stadium. When things are uncertain, rituals provide comfort. When someone is sick, we show up with soup. When people are anxious they turn to rituals even more for solace but the pandemic hampers our ability to do so. Without these common rituals, it is no wonder we feel ill at ease.

Creating New Rituals

It is more important now as we face a new year with continued challenges that we modify how we participate with each other or create new rituals. We have stopped shaking hands and hugging replacing it with non-contact greetings that convey the same meaning. A handshake indicates an agreement of trust. A hug says you care. While I like the sacredness of placing my hands in prayer position or across my heart with a respectful nod, most of the time, I find myself doing a quick head bob while jerking my extended hand back and establishing my 6ft distance. It is awkward. Learning a new way of behaving takes a while.

It has been inspiring to see how people have reached out to their neighbors by placing teddy bears in windows, or stepping onto balconies to sing or applaud the healthcare workers. Families report cooking together and eating shared meals more so than before with our busy lives. Car parades are safe ways to honor recent graduates or milestone birthdays. Thank goodness for our technology. Zoom, FaceTime and other gadgets create an ‘almost like being there’ experience. It allows us to have virtual worship services, games nights and even memorial services.

Consider creating your own personal rituals. It brings a sense of calm in an otherwise chaotic time. For me, that is making a cup of tea. It could be lighting a candle, leaving an offering, saying a blessing, writing a letter. Let us schedule some dates with friends and family to break bread together, share a meal, reminisce, or play a game. It is vital we stay connected and support one another.

How to Hug Safely During Covid-19 (from Brain and Life Magazine)

Before you get close, keep these strategies in mind, suggests Matthew Miller, PhD, associate professor at the McMaster Institute for infectious Disease Research.

WEAR MASKS. Both you and whomever you hug should wear masks that cover the nose and the mouth.
KEEP IT SHORT. A hug should last no more than 10 seconds.
TURN AWAY. Point your faces in opposite directions to avoid breathing on each other. If you hug children, have them hug you around the waist, with their head turned away.
GET CREATIVE. “Try hugging people from behind so you’re not breathing in each other’s faces,” says Dr. Miller. You can even kiss them on their head while standing behind them.
STAY DRY-EYED. Masks work only when they are dry. If you’re tearful, it’s better to save the hug for another time.

Michelle Garratt

As I write this reflection, I’m sitting at the Phoenix airport waiting on a rental car to head to Sedona for a women’s healing retreat. Two months ago if you’d have told me this is where I’d be I would’ve said you are crazy. Well, here I am opening up to a whole new adventure of healing inside and outside, making new friends and just experiencing the beauty of Sedona.

To put things in perspective, two days ago I was overwhelmed with stress and anxiety that forced me to stay in bed for most of the day. This is one of the ways that Parkinson’s rears its ugly head in me. When I feel healthy and less pain, I put my body into overdrive knowing it won’t last so I seize the moment. I often pay a price of fatigue and/or pain but I don’t want to miss it. It’s strange how one day I might be able to hike for 2 hours while another I’m barely able to get out of bed or I have so much dystonia in my foot I have to repeatedly stop and sit down on a walk. This is when I try to appreciate the little things. I try to look beyond my cramping and see what’s around me. Invariably I’m intrigued by a bird singing, the leaves blowing in the wind, someone’s laughter or just simply taking in a moment of stillness.

I choose to live by this simple philosophy regarding my Parkinson’s: focus on what I can do versus what I can’t.

This has really helped me through the last six years as I am a doer and I am an active bodied person. I am still that person but have to sometimes put on the brakes. In that moment where I’m pausing I try to be OK with it. Thank God I have a circle of friends that understand this disease very well as they live with it themselves. We communicate through Marco Polo, an online app where you videotape yourself and when someone in the group is ready they can watch your video and respond if they wish to. It has saved me through this COVID-19 quarantine. Simply knowing that there are people who get it and are there to support, listen, laugh or cry is encouraging. It’s an honest and open communication with some wonderful people. They also choose not to quit but lean in and make the most of this life.

Lessons in resilience

I also credit my parents for a wonderful example of resilience, positivity and adventure. Both have endured many hardships and continue to today. Their faith and determination are unparalleled. I’m fortunate to have this framework as my model for life. My dad has late stage Parkinson’s and his grit and will are so admirable. My mom has RSD in one leg and just broke her good foot and ankle in 3 places. While she’s in great pain, she is determined to do it herself, at least give it a try and truly is my greatest witness to resilience while suffering. Important to mention, they both have learned it’s okay to ask for help with grace and gratitude. How lucky am I to have them as my parents and teachers.

I recognize March 23rd as my 6 year anniversary of being diagnosed with Parkinson’s disease. Whether or not this calls for a celebration is debatable. I do celebrate the lives this disease has introduced me to that have made it easier and honestly challenge me at being a better person. I also celebrate my inner strength and spirit that was always there perhaps but now shows itself to me in ways I can be proud. For example, once I was an avid runner and would spend a solid hour per day running for fun, exercise and inner peace. Since some of my symptoms are dystonia and balance issues, I can’t safely run. Plus it’s not enjoyable but painful. After mourning this loss like a dear friend, I took to the notion of “what can I do.” My husband Dan and I took this motivational phrase to a whole new level by moving onto a floating home on the Columbia River. Not only was it our dream to retire there one day but we also love to kayak. It was the best thing we have done since having a family. The daily movement of paddling against the current took away stiffness in my shoulder due to PD but also made me feel stronger. I actually forgot about Parkinson’s while out on the water. I’m forever grateful for our decision. Another interesting thing occurred during COVID-19 quarantine. I decided to finally self publish my book for children and the response has been overwhelming. It just so happens that the message is timely for children coming back to school by helping them breathe deeply in and out with a calming rock on their body to help them feel more calm. It’s also a reminder for me to remember to breathe deeply as well.

I will admit there are times when I am so sore I need to remain in bed or see my Physical Therapist or massage therapist. Mostly I need to keep this body moving. Stretching. Breathing. So like my parents and parky friends I do my best to be in the moment and have the best day possible no matter what comes my way. Today is a gift!