Parkinson’s – A Family Affair

When one person in a family is diagnosed with Parkinson’s Disease (PD), the diagnosis impacts the entire family. The Torrence family has been actively involved with the Peterson Foundation for Parkinson’s since 2017. Board member, Gail Torrence, is here with her daughters Sarah Rink and Katherine Fiorianti to share their story and the impact Parkinson’s has made on their family.

In 2013 Gail’s husband, Scott Torrence, began experiencing tremors in his left hand. After seeing many doctors and specialists, he was finally diagnosed with Parkinson’s in 2014. “I was familiar with the disease, as my mother was diagnosed in 2008. However, I did not understand the full extent of the symptoms and progression.” says Gail.

Upon learning more about the diagnosis and understanding the importance of community, Gail and Scott became regular members of the Franklin Support Group. Throughout the next few years, Scott and Gail became even more involved in the Foundation. Scott joined the Board of Directors in 2018 and Gail established the Peterson Painters in 2019. They supported the group by attending Petey’s Party and Golf Tournament – encouraging their friends to attend these events.

In November 2020 Scott passed away due to cancer but his legacy lives on.  “If you knew Scott, you know he was deeply committed to this Foundation throughout the last few years of his life. The Franklin Support Group grew with the commitment Scott made to promoting the Foundation to the Parkinson’s community and beyond in Middle Tennessee,” states Executive Director, Debbie Lowenthal.

Gail has taken over his seat on the Board of Directors, co-chairs the Franklin Support group and works with many of the small groups including the Peterson Crafters, Women with PD, and the Peterson Painters. Their eldest daughter, Sarah Rink, a registered dietitian has conducted several webinars on nutrition and health for individuals living with Parkinson’s. “Through my experience with Parkinson’s, I have been able to share information resources, support and understanding to others in my network including business owners, a church member and friends who have been diagnosed with or have a loved one living with Parkinson’s.” states Sarah.

Although living in Virginia, Katherine stays connected with the Foundation through her work on social media, marketing campaigns and promotional materials for the nonprofit. “It’s a way to stay connected to my dad. Even though I can’t be there for every meeting or event, I am still able to make an impact and I know he is proud of all three of us and our commitment to PFP.”

The Peterson Foundation for Parkinson’s understands not all individuals diagnosed with PD have the family support that Scott had when living with Parkinson’s. That is why the foundation continues to add support groups across Middle Tennessee for both individuals living with Parkinson’s and their care partners. Fore more information on how you can join a support group email brent@petersonforparkinsons.org.

 

 

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Enjoy the Holidays with Parkinson’s

For many, the holidays are a joyful time to gather with loved ones and friends, reflect on the past year and think about what’s to come. But for some with recently diagnosed or progressing Parkinson’s or with depression or anxiety, it can be a stressful or lonely time. Visiting with others can bring worry or increased symptoms, and not attending social events can bring feelings of isolation. These are natural and common reactions.

 

Continue medications as prescribed.

Traveling long distances or switching time zones can make medication dosing confusing, but most doctors recommend that you stay on the same schedule. For example, if medication is prescribed every three hours and you’re awake overnight (such as on a long flight), continue taking it every three hours.

Always consult with your personal doctor about your specific medication regimen.

Take an updated copy of your medication list and bring medications in their bottles in your carry-on when flying. A few weeks before leaving, check your medication supply. Notify your doctor and/or pharmacist if you need extra refills to cover the time you’re away.

Don’t forget to exercise.

Regular activity is sometimes the first thing to drop off a full schedule, but exercise can boost your mood and help your sleep. Even 30 minutes of walking per day is beneficial. If you are visiting family or friends, make it a group activity.

Keep your usual sleep schedule.

Going to bed and getting up around the same general times (within an hour or two) will help keep you in the same routine of exercising, eating and taking your medication. It’s okay to relax on vacation, but sticking close to your typical patterns will help you feel better in general.

Plan Ahead

When going out, always plan more time than you think necessary to get ready and get to your destination since holiday traffic and weather can be unpredictable. Give yourself a cushion to remove any pressure from potentially getting lost or running late that would otherwise create worry and worsen symptoms.

When leaving the house make sure you bring your Aware in Care Kit in case of emergencies.

Stick to a healthy diet.

An abundance of Christmas cookies, cocktail parties and family dinners make it easy to eat and drink in excess. Of course you should enjoy treats in moderation, but for people with Parkinson’s, a change in diet can have important effects. After big meals, especially protein-heavy ones, your medication may not work as well (meaning your symptoms may not be as well-controlled). You also may have constipation if you’re not following your usual eating habits. (Make sure you drink enough water and eat lots of fiber-filled fruits, vegetables and whole grains.) And remember that your balance may be more sensitive to the effects of alcohol.

Choose your social events thoughtfully.

You don’t have to go to every celebration, but there may be some events you can’t miss. Think about your stressors (an undisclosed diagnosis, family dynamics or difficulties communicating in crowds, for example) and set limits. Leave after one drink, pivot if certain topics arise in conversation, or commit to no more than two engagements each week.

But don’t avoid socializing altogether. In general, people who are more connected live happier, more fulfilled lives. And in Parkinson’s, talking with others may benefit cognition, and positive relationships can boost mood.

Much of this advice applies to daily life with Parkinson’s, but it’s key during busy times like the holidays. Pay attention to your feelings and needs so you can enjoy any time you celebrate with family and friends.

 

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Celebrate #GivingTuesday 2022

The Peterson Foundation for Parkinson’s Celebrates #GivingTuesday, joining millions around the world participating in the global generosity movement on November 29, 2022.

Founded in 2009, the Peterson Foundation for Parkinson’s is a non-profit with a mission to support and enhance lives of people with Parkinson’s disease, their care partners, and their families to achieve their highest possible quality of life through awareness, education, and programs within a caring community.

This will be PFP’s third year participating in #GivingTuesday. It is estimated that more than 6,400 people in Middle Tennessee are diagnosed with Parkinson’s Disease.  As the Middle Tennessee Parkinson’s community grows, PFP has also grown from one support group in 2017 to 8 support groups in 2022! Our goal is to continue to increase educational resources and programs for those living with Parkinson’s, their families and care givers. You can help us achieve this goal!

“As a small nonprofit organization with limited funds, we turn to Giving Tuesday and ask for help to raise the money needed to continue to grow our support groups, educational offerings and activities.” states Brent Peterson, Founder and Board Chair of the Foundation.

Those who are interested in joining Peterson Foundation for Parkinson’s GivingTuesday initiative can visit https://petersonforparkinsons.org/ or visit the PFP Facebook Page (https://www.facebook.com/petersonfoundation).

About Giving Tuesday

“GivingTuesday inspires people all around the world to embrace their power to drive progress around the causes they care about, not just on one day but throughout the year.” said Asha Curran, GivingTuesday’s CEO, and co-founder. “With country and community leaders, millions of organizations, and countless givers of all kinds, GivingTuesday is creating a shared space where we can see the radical implications of a more generous world.”

For more details about the GivingTuesday movement, visit the GivingTuesday website.

 

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My Story: Dan Bell

“PFP has been the most important resource I have,” said Dan Bell when discussing his Parkinson’s Journey. His wife, Gwen (an employee at Vanderbilt) heard about the Peterson Foundation for Parkinson’s Active with Parkinson’s support group one day at work shortly after Dan was diagnosed. After a decade of experiencing executive skills and memory issues, Dan was officially diagnosed in 2018 with Parkinson’s. Dan does not experience rest tremors, instead he says his greatest issues include weakness and pain in his feet, and many of the typical non-motor symptoms such as acting out dreams in his sleep or having overall stiffness throughout his body during dopamine medicine off times.

Dan has been attending meetings and seminars supported by the foundation to gain knowledge and understanding of living with PD since 2018. “I mistook shuffling my feet to be a symptom associated with an old, herniated disc. Now it all makes sense,” states Bell after years of learning about his prognosis. He attributes most of his knowledge including how to exercise, what to eat and how to choose medical professionals through his experience with PFP.

Dan and his wife have called Spring Hill, TN home for the past 25 years. In his free time, he enjoys watching sports and films. And in high school he dribbled a basketball for 51 straight hours as a fundraiser for the Muscular Dystrophy Telethon at the CBS affiliate in Nashville. Today Dan still stays active, “I take spin classes and rock steady boxing for exercise throughout the week.” He says these exercises have made a world of difference for him and highly recommends anyone living with Parkinson’s to stay active.

 

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Dirt Therapy – Benefits of Gardening with Parkinson’s

For many people, a garden is associated with happy family memories, but gardening also provides health benefits for people living with Parkinson’s. When you plant a garden, pull weeds or water your flowers, you’re not just getting chores out of the way – you’re improving your mental and physical health.

Whether you have a green thumb or are just getting started, gardening can help you live well with Parkinson’s. In this article, we’ll take a look at how.

PHYSICAL EXERCISE

According to the Centers for Disease Control and Prevention, you can burn about 330 calories doing one hour of light gardening and yard work. In fact, you can burn more calories gardening than you can walking at a moderate pace for the same amount of time.

Gardening requires the use of your hands and fingers to perform many different tasks, therefore you are strengthening your fine motor skills, building strength, and flexibility. This type of exercise—moving your hands and fingers to grab, lift, pull, push, and press—can help minimize muscle cramping.

Tending your garden also requires you to stand, reach, sit, squat, bend, and twist.  These types of movement are fantastic opportunities to stretch and strengthen all the muscle groups in your upper body, neck, arms, shoulders, and hips.

TIP: Stretch before and after gardening. Yard work can make anyone stiff and sore, especially hunching over a garden, and this is especially true for people with PD.

Like any other moderate to intense physical activity, you’ll want to pace yourself, listen to your body if it wants to rest, and always have plenty of water on hand.

HEATHY EATING HABITS

Keep in mind that the fresher the produce, the better it tastes. You know how buying fruits and veggies at your local farmer’s market leads to higher-quality meals with fresher ingredients compared to buying frozen or canned produce?

Well, nothing’s fresher than eating something straight from your home garden. Not only is it jam-packed with vital nutrients, but food also just tastes better when you grow it yourself.

TIP: Planting vegetables and herbs in raised beds can help relieve pressure on the joints. It also helps to place a cushion under your knees if you plan on being low to the ground for extended lengths of time.

STRESS REDUCER

Pulling weeds, planting seeds or watering flowers may seem like strenuous work, but once you get into the zone so to speak, it can be extraordinarily relaxing.

If you’re gardening outdoors, you’ll receive the calming influence of time in the sun and in natural green spaces. Take the time to enjoy the process of tending your garden, as this is a perfect way for you to be present and mindful and to practice these important skills. Allow your garden to become a peaceful refuge that assists you in managing your journey with Parkinson’s.

TIP: Working in a garden can help you recuperate if you’ve experienced something stressful.

BUILDS COMMUNITY

To live well with Parkinson’s, it’s essential to stay engaged with others and to socialize frequently. Working in a garden with people of different ages, abilities, and backgrounds is a way to expand both what you know and who you know. Many gardeners enjoy sharing ideas about their favorite roses or a new type of organic compost with other gardeners and find friendship in garden clubs and similar groups. Gardening is also a rewarding activity to do with friends, kids, and grandchildren, not only helping you feel better physically and mentally but also giving you special memories with your loved ones.

Tip: Community colleges often offer classes on various aspects of gardening, from composting and seasonal planting to design and fostering beneficial insects to help your garden thrive organically.

IMPROVES MENTAL HEALTH

Being out in the garden even under minimal sun exposure can increase Vitamin D absorption and, in turn, increase levels of serotonin, a chemical in our brain responsible for balancing moods. Engaging in gardening activities can provide ample doses of vitamin D for a healthy mentality.

Research shows that daily gardening may lower the risk of dementia by 36%. There’s some debate about whether gardening on its own is enough to affect cognitive skills like memory and new evidence shows that gardening activities may spur growth in your brain’s memory-related nerves.

TIP: Begin a garden journal. Gardening requires planning, problem solving, and the ability to learn new skills and information, which keeps the brain active and creates new neural pathways.

As is true of almost any activity, gardening poses certain risks to your health and safety. The CDC recommends that you take these precautions while you’re in the garden:

  • Pay attention to product directions any time you’re using chemicals in the garden. Some pesticides, weed killers, and fertilizers can be dangerous if used incorrectly.
  • Wear gloves, goggles, long pants, closed-toe shoes, and other safety gear, especially if you’re using sharp tools.
  • Use bug spray and sunscreen.
  • Drink lots of water and take frequent shade breaks to prevent overheating.
  • Listen to your body. It’s easy to injure yourself when bending over and spending time outside in the sun.

Key takeaways

Gardening invites you to get outside, interact with other gardeners, and take charge of your own need for exercise, healthy food, and beautiful surroundings.

Whether your patch is large or small, a raised bed, community garden, or window box, getting dirty and eating clean are good for you.

As you can see, gardening provides numerous benefits for people with Parkinson’s. As the weather turns warmer and the days grow longer, try your hand (with or without a green thumb) at the activity, and notice the many ways it can help you live well.

 

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SKIN AND PARKINSON’S DISEASE

Not only does Parkinson’s affect the neurological system, but changes in the skin are common symptoms of PD. Many individuals living with PD develop oily or flaky skin, while others might experience dry skin or excessive sweating. While overall cancer risk is reduced in PD, skin cancer risk – especially melanoma – increases.

Keep in mind, it is important to continue your daily outdoor activities (walking, gardening, golfing, etc.) to get your vitamin D and fresh air. Below are some common symptoms and tips to handle skin problems safely.

 

Seborrheic Dermatitis – Irritated skin

Seborrheic dermatitis is a common skin condition in the general population, but even more commonly found in people living with PD. This condition causes scaly patches, red skin, and stubborn dandruff, but can also affect oily areas of the body, such as the face, sides of the nose, eyebrows, ears, eyelids and chest. In PD, it is thought to be caused by over-secretion of oils from the sebaceous glands in the skin.

Seborrheic dermatitis can be controlled with:

  • lifestyle changes
  • topical creams
  • washing the skin regularly
  • avoiding harsh soaps and products that contain alcohol
  • Over-the-counter medicated shampoos containing salicylic acid, zinc, selenium, tar or ketoconazole can help.

A dermatologist can recommend treatment for severe symptoms, such as prescription-strength shampoos, steroids or other immune suppressants.

 

Sweating Changes

Another common skin-related non-motor symptom of PD are sweating abnormalities, more specifically the inability for your body to regulate its temperature correctly.  In its most pronounced form, people with PD describe episodes of sudden, profuse sweating that necessitate a change in clothing.  But it could also mean reduced sweating for some people.

In people with PD, there can be pathologic changes in the parts of your brain that regulate temperature, as well as in the nerves that regulate the sweat glands. People with PD may experience increased or decreased sweating, or a combination of both. One common pattern is reduced sweating in the body with increased sweating in the face. Another temperature regulation symptom that some people with PD experience is the sensation of cold hands or feet.

These at-home tips can help with sweating:

  • Wear breathable cotton clothes and socks, and non-synthetic shoes
  • Take lukewarm or cold showers
  • Increase fluid intake
  • Drink cold liquids
  • Use antiperspirant

 

Skin Cancer

Melanoma is a type of skin cancer that has been consistently linked to PD. People who have had melanoma are at an increased risk for PD and people who have PD are at an increased risk of melanoma.

Melanomas are more likely to spread from the skin to internal organs than any other skin cancers. Recent studies have suggested the likelihood of developing malignant melanoma is two to seven times higher in people with PD than the general population. While melanomas are relatively rare (even in people with PD), early diagnosis and treatment is important.

You should know what other melanoma risk factors you have. These include:

  • Increased age
  • Male
  • Personal history of melanoma or other skin cancers
  • Family history of melanoma
  • Fair skin, light eyes, freckles
  • Exposure to UV rays, usually from sun exposure

These tips below are applicable to all adults with and without PD:

  • Minimize sun exposure by wearing protective clothing and avoid being out in the sun at peak times, such as midday.
  • Use a waterproof sunscreen that protects against UVA and UVB rays and that is at least SPF 30.
  • Visit a dermatologist at least once a year for a skin check.
  • Visit the National Institutes of Health website for more information on the types of skin changes that should raise concern.

 

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Parkinson’s Disease (PD) FAQs

Parkinson’s Disease (PD) FAQs

What is Parkinson’s Disease?

Parkinson’s disease is a progressive neurological disorder or disorder of the brain.

How is Parkinson’s Disease diagnosed?

No specific test exists to diagnose PD. Your doctor trained in nervous system conditions (neurologist) will diagnose PD based on your medical history, a review of your signs and symptoms, and a neurological and physical examination.

What causes Parkinson’s Disease?

The exact cause of PD is not known, although scientists believe it results from a combination of genetic and environmental factors.

What are the symptoms of Parkinson’s Disease?

The most common symptoms of PD include tremor at rest, rigidity (stiffness), bradykinesia (slowness of movement) and postural instability (lack of balance).

How many people are currently living with Parkinson’s Disease?

Worldwide, there are more than 10 million people living with PD.

How many people are diagnosed with Parkinson’s Disease each year?

Every year in the US, 60,000 people are diagnosed with PD.

Can Parkinson’s Disease be cured?

Not yet. However, many PD symptoms can be treated, and researchers are making advances in understanding the disease, its causes and how to best treat it.

What are the stages of Parkinson’s Disease?

The stages of PD correspond to the severity of movement symptoms and to how much the disease affects a person’s daily activities. At all stages of PD, effective therapies are available to ease symptoms and make it possible for people with PD to live well.

  • Mild PD: movement symptoms, often tremor, occur on one side and may be inconvenient, but do not affect daily activities. Regular exercise improves and maintains mobility and balance, it also reduces depression and constipation.
  • Moderate PD: movement symptoms occur on both sides of the body. The body moves more slowly and trouble with balance and coordination may develop. Regular exercise combined with physical or occupational therapy can help with mobility and balance.
  • Advanced PD a person may have great difficulty walking; may be in a wheelchair or bed most of the day. The person will need assistance with all daily activities. Balancing the benefits of medications with side effects becomes more challenging.

I’m struggling with my diagnosis, and I need support. Where do I go to find it?

You’ve come to the right place! Join the Peterson Foundation for Parkinson’s community to share your own experiences and learn from others. Click here to find a local support group.

Who is more likely to develop Parkinson’s Disease: Men or women?

PD affects both men and women, though about 50% more men are affected than women.

Is Parkinson’s Disease considered a movement disorder?

PD is a movement disorder that is degenerative and chronic, and symptoms continue and generally worsen over time.

Does Parkinson’s Disease only affect individuals of advanced age?

While PD does tend to affect people over age 60 more often, in about 5% to 10% of cases, “early onset” PD can begin in people as young as age 40.

When is Parkinson’s Awareness Month?

Parkinson’s Awareness Month is observed in April. Parkinson’s Awareness Month is an opportunity to increase awareness about the ailment and its symptoms, as well as to support those living with PD.

When did World Parkinson’s Day Start?

World Parkinson’s Day on April 11 began in 1997. It commemorates the birthdate of Dr. James Parkinson, the man who first identified the disease nearly 200 years ago.

Which is the best symbol for Parkinson’s Disease?

The red tulip is the symbol of Parkinson’s disease awareness. A purple ribbon is the chosen color to wear in support of people with the disease.

 

My Story: Bonnie Kays

Bonnie Kays might be one of the most active members of the Franklin Support Group. Not only is Bonnie on the Steering Committee, but she participates regularly in the Peterson Painters, Peterson Crafters and the Women with PD support group. If you are at any Franklin event, you can’t miss Bonnie.

Originally from Buffalo, NY Bonnie and her husband, David, moved to Franklin in 1990 after living in Michigan, Missouri, California and West Virginia. Since moving to Tennessee she has been very active with Williamson County schools and teaching parenting classes at the Williamson County Jail. “I hope they let me back in jail soon!” said Bonnie, since she has not been able to teach since COVID.

In 2019, Bonnie began noticing a tremor and realized she was moving slower. It was then she was diagnosed with Parkinson’s Disease. Since being diagnosed Bonnie stated, “I feel like PD has taken my energy”. However, one wouldn’t notice since Bonnie keeps herself busy with PFP, teaching, reading, volunteering, and attending youth mission trips with her church (Franklin First United Methodist Church). She has also been know to zip line, parasail, and white water raft.

Bonnie learned about PFP through her doctor and as a member of the same church and friends for years, she was invited by the Torrence’s to attend the Franklin Support Group meetings. The Foundation has not only helped Bonnie learn about Parkinson’s but has provided her an outlet to be with individuals with similar experiences. “PFP has helped me cope with Parkinson’s just by being such a welcoming, supportive community.”

 

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Nutrition and PD

No specific diet is recommended for individuals living with Parkinson’s, but it is important to maintain overall good health.  Below are a few tips to consider but consult with your doctor or dietitian before starting any new diet. They can help design a healthy, balanced diet to fit your individual needs and improve well-being.

Maintaining Your Health

  • Avoid “fad” diets. Eat food from all food groups, following guidelines of the S. Department of Agriculture MyPlate program. Eating a variety of foods will help you get the energy, protein, vitamins, minerals, and fiber you need for good health.
  • Choose a diet with plenty of grain products, vegetables, and fruits, which provide vitamins, minerals, fiber, and complex carbohydrates and can help you lower your intake of fat.
  • Limit sugar intake. A diet with lots of sugar can have too many calories and too few nutrients.
  • Incorporate foods high in antioxidants (which are important for overall brain health) into your diet. These include brightly colored and dark fruits and vegetables.
  • Choose a diet low in fat, saturated fat, and cholesterol to reduce your risk of heart attack and certain types of cancer and to help you maintain a healthy weight.

Eating to Ease PD Symptoms

  • Drink enough water (six glasses a day) and eat fiber-rich foods, including brown rice, whole grains (breads with three grams or more of dietary fiber per slice), fruit and beans to ease digestive difficulties and constipation.
  • Take your medications with a full glass of water. It may help your body break down the medication more efficiently.
  • Limit sugar intake, alcohol, and caffeine particularly before bed, as they may interrupt sleep.
  • Snack on small quantities of walnuts, cashews, and other nuts to promote brain health. Also try to incorporate berries, which contain beneficial antioxidants, and foods that may have anti-inflammatory effects in the brain, like salmon, tuna, and dark, leafy green vegetables.

Tips for Getting Started

It is important to consult with your doctor before changing your diet as some of your medications maybe required to eat in timing with your meals. It is also recommended you bring in a registered dietitian, who can help you plan menus and make shopping lists for preparing nutritious meals that you like and that account for your individual needs and the timing of your medications.

For more information download the Parkinson’s Foundation Nutrition Matters Book

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My Story: Reggie Gaulle

If you have ever been to a Franklin Support Group meeting, or attended the Navigating the Parkinson’s Path Annual Expo, you have probably been greeted by Reggie.

Reggie Gaulle has been a part of the Parkinson’s community since 2008, when Patricia, Reggie’s wife was diagnosed with PD. Reggie was observing new tremors, increased fatigue, and cognitive decline in Patricia when they decided to visit her doctor for a diagnosis. As a care partner, Reggie has learned how Patricia’s “new brain” works and her changing limitations. “She and I have survived my cooking; the bills are paid, and the house is not in too bad a shape,” joked Reggie when asked how life has changed since retiring in 2020 and taking on more household tasks. Together, they enjoy traveling, watching tv, spending time with others and helping others in the Parkinson’s Community.

Reggie is part of the Franklin Support Group Steering Committee and head of the Encouragement Team Leaders. “The fellowship with others, who have been touched by this disease, has been invaluable,” said Reggie. The programs, services, and information provided through PFP events have provided insight on how to navigate this journey the Gaulle’s call life. “It is not over yet. However, with the help of the professionals in our lives [great doctors, nurses and therapists] and the fellowship we have met on this journey, I feel that we will both make it, and continue to enjoy the latter part of our life together.”

 

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