Football season is here and my excitement for the game has grown since my son, Jaydon, started playing. I’m proud of him and all my kids – I’m the proud dad of five college graduates, with another graduating next year. And my two youngest sons (we call them “the littles”) are already tearing it up in football, baseball, and soccer. This summer I took the littles to see their older brother practice. I don’t have the words to describe how much joy I felt that day.
Most of my kids were in grade school when I was diagnosed with Parkinson’s. Some of them don’t know or can’t remember a time when I wasn’t living with the disease. For many years I was worried about how Parkinson’s would affect my ability to be a father, especially when I was dealing with my own mental health struggles. I didn’t want Parkinson’s to negatively impact my kids, but I also didn’t want to hide it from them. So, I was open and honest about how I was doing and made sure to involve them in the Parkinson’s community from the very beginning. And as it turns out, they have become intelligent, compassionate people who want to do what they can to help others.
My kids are the greatest joy of my life and my purpose. When this disease gets me down, I remind myself that I’m raising amazing kids and that I get to be a part of their incredible lives. We share a purpose in the Brian Grant Foundation, and we’re grateful that you’re a part of it with us.
Power forward,
Brian
Brought to you by AbbVie, Amneal, CND Life Sciences, Providence Brain and Spine Institute, and StrivePD.
As a member of the Unified Parkinson’s Advocacy Council, the Brian Grant Foundation will be joining forces with advocates across the county on Tuesday, September 17, 2024, to urge the federal government to take steps to better understand and address environmental risk factors for neurodegenerative diseases.
We will urge the White House to ban paraquat, a harmful chemical thought to increase Parkinson’s risk by up to 500 percent. We will urge Congress to cosponsor the HEALTHY BRAINS Act (H.R. 9233), a new bill that would direct the federal government to research environmental risk factors for neurodegenerative diseases like Parkinson’s.
How can you join the movement!
Led by the Unified Parkinson’s Advocacy Council, the Parkinson’s National Day of Action is entirely virtual, and it only takes a few minutes to participate! On September 17, participants in the National Day of Action will:
1. Sign a petition to the White House urging them to ban paraquat, a harmful herbicide thought to increase Parkinson’s risk by as much as 500 percent.
2. Send an email to Congress to ask them to cosponsor the HEALTHY BRAINS Act (H.R. 9233), a new bill that would direct the federal government to research environmental risk factors for neurodegenerative diseases like Parkinson’s.
Watchour September Wellness Webcast: Advocate for the Parkinson’s Community on the National Day of Action
Amy Becker, Advocacy Director at The Michael J. Fox Foundation spoke to us about the important legislative work being done this year and how you can advocate for the Parkinson’s community on the National Day of Action on September 17. Learn about the policy priorities for the National Day of Action, what they mean for the Parkinson’s community, and how you can get involved.
More than 1 million Americans live with Parkinson’s, the second most common and fastest growing neurological disease. The good news? You can help us get closer to a cure by participating in the Parkinson’s National Day of Action!
By “Twitchy Woman” Sharon Krischer –Author of the blog “Twitchy Woman, My Adventures with Parkinson’s Disease” and women with PD advocate.
When I was diagnosed 15 years ago, there were not a lot of resources for women with Parkinson’s. I did not know any other women with PD and the few support groups in my area met at times that didn’t work for me. I had one male friend who was diagnosed about the same time, so the two of us became our own support group of two.
I am glad to say that things have definitely changed in the last 15 years. Since I started writing my blog, Twitchy Woman, My Adventures with Parkinson’s, 10 years ago, I have been fortunate to have many opportunities open up to me as a woman with PD. I have met many other women through the various PD organizations and at the 3 World Parkinson Congresses that I have attended. We have participated in studies about women with PD, attended events specifically for PD and we have worked hard to dispel the idea that Parkinson’s is an old white man’s disease.
Many women with PD continue to work long after their diagnosis. Younger women have been raising a family in addition to work in many cases. We have shown that life does continue after a Parkinson’s diagnosis.
I recently reached out to some of the women whom I have met and have given me inspiration over the years, to give me some tips for Women with Parkinson’s. All of them have been living with Parkinson’s for 10 years or more. I hope that they give you inspiration on your journey with Parkinson’s.
Continue to do what you love.
Linda says if you love dancing, dance. If you love running, run. Continue to cook, travel, learn, read…whatever speaks to you. Keep positive people in your life that accept you as you are. Continue to do things for others. Giving makes one feel good and satisfied. Have a purpose in life and always try to better yourself-even in little ways.
Keep looking ahead, keep a smile on your face and keep moving.
Carole ‘s advice is that worrying and being angry does no one any good. Do something every day that is physical, mental, emotional and spiritual. Smile and keep moving!
Make yourself a priority.
According to Jen, despite a scary, life altering diagnosis, you can live well with PD. You must make yourself a priority! Embrace exercise and a diet rich in fruits, veggies nuts, whole grains, and lots of H2O. Be your own advocate. Keep a journal of side effects of meds and your symptoms to share with your doctor. Your doctors know about PD and medicine, but you know your body!
Finding Community, having meaningful projects to engage in.
Farrell says that finding your community, along with exercise, trying to be positive, and researching the latest information about the disease are all important. Seeing how others are trying their best to live well with PD constantly inspires her to keep going.
Find a Mentor with Parkinson’s.
From Susan, one of the creators of the Twitchy Woman Mentor team, who wrote this with no pressure from me: “Holding hands with others gives your force against the storm much more power. Which is the mission of Twitchywoman.com and it’s peer support mentor program.”
Ask for help. It’s OK.
Naomi has a few words of wisdom to share: It’s okay to ask for and/or receive help. Do the things that bring you joy. Sing, dance, laugh. Get dressed up. Take a class, learn something new.
My Final Tips
My advice to you – listen to these wise women. Keep a positive outlook, do what you love to do. Exercise, take care of yourself physically and spiritually. Exercise! Find joy! Eat well and keep on moving!!!
Finally, find your community. You don’t need to go it alone as you move forward with Parkinson’s. Find a Parkinson’s buddy through the Michael J Fox Foundation, your local PD organization or Twitchy Woman’s Mentor Program.
Just remember that together, we will do better.
Hugs,
Sharon
About Sharon: Sharon Krischer was diagnosed with Parkinson’s Disease in January 2009. About 6 years ago Sharon started writing a blog called “Twitchy Woman, My Adventures with Parkinson’s Disease” to fill a need for information about living with Parkinson’s Disease from the patient’s point of view for people who were newly diagnosed. Her goal is to present living well with PD in a positive, sometimes humorous way. Sharon lives in Beverly Hills, CA with her husband, Joel. They have 3 daughters and 4 fabulous grandchildren.
In partnership with our Platinum Partner
Amy Lavallee moderates a panel discussion with guests, Sree Sripathy and “Parkinson’s Diva,” Maria De Leon. Topics discussed included: • Challenges in receiving a diagnosis • Lower rates of referral and uptake of specialty care • Hormones, fertility, and pregnancy • Care partners for women with Parkinson’s • Impact of societal expectations on women with Parkinson’s • Financial considerations
In partnership with our Platinum Partner, Amneal.
“Parkinson’s Diva” Maria De León –Specialist, Caregiver, and Person with Parkinson’s Offers Her Advice
Maria De León, MD had no intention of becoming a doctor. She began her studies in neuroscience, where she gained an interest in Parkinson’s. That led to many years studying and training to be a neurosurgeon. But when Maria realized that her “people person” nature was more suited to neurology, she changed her focus and became a movement disorders specialist.
“I wanted to be able to meet people, talk to them, and get to know them,” Maria says. “So, my passion became neurology.”
While Maria was finishing her fellowship, her grandmother started developing Parkinson’s symptoms. Maria was the doctor who diagnosed her with the disease. In the last year of her grandmother’s life, she lived with Maria, who became her full-time caregiver.
“I learned how difficult it is to care for someone,” Maria says. “I started focusing on the unmet needs of caregivers and family members and it really opened up my practice.”
It wasn’t long after her grandmother passed that Maria started noticing hew own symptoms of Parkinson’s. While examining her patients, Maria realized that she was having a hard time tapping her fingers, walking straight, and balancing. She also started to notice problems with her handwriting.
“Doctors are known for their atrocious handwriting,” Maria says with a laugh. “But when I really couldn’t read my own handwriting and nurses were writing my notes and prescriptions, I realized I most likely had Parkinson’s.” Despite Maria’s specialty training in Parkinson’s and family history of the disease, it took three years for her to finally receive a diagnosis.
“I attribute 90% of the difficulty in receiving a diagnosis to being a woman,” Maria says. “I had doctors that would just dismiss me, saying it was stress or that I was overidentifying with my patients. I had one doctor who just walked out.”
The experience mirrored her early days as a movement disorders specialist, when Maria had to work hard to be respected and trusted by her male counterparts.
“Being a young, Hispanic woman in a field where most of the specialists are male was really hard,” Maria says. “There was a lot of discrimination and, initially, I was challenged all the time. I even received a book about Parkinson’s from another doctor who didn’t trust me. I’m a trained specialist, and they handed me a book on Parkinson’s.”
Maria eventually earned the trust and respect of her colleagues. But when she developed symptoms, the same people who trusted her as a physician didn’t believe she had Parkinson’s.
After seeing many doctors, Maria finally received a diagnosis. She wasn’t shocked she had Parkinson’s. But she was shocked at how well Sinemet worked, particularly for her pain and visual problems that, at the time, weren’t known symptoms of Parkinson’s.
“When I finally had a diagnosis and started taking meds, lo and behold, my pain improved. My stiffness and slowness improved,” Maria says. “I always say if I could’ve treated myself and written my own prescription, I would’ve been better from day one!”
Maria also attributes some of the challenges of her diagnosis to having symptoms that weren’t well known seventeen years ago when she was diagnosed. Pain, for example, wasn’t commonly seen in the initial stages of Parkinson’s but Maria had this symptom from the start. Today studies suggest pain is more common for women with Parkinson’s than men, as well as fatigue, mood and sleep disturbances, and urogenital symptoms.
Maria’s difficult path to diagnosis and realization that women experience Parkinson’s differently than men led her to get involved in advocacy.
“It wasn’t until I developed Parkinson’s that I noticed it’s very different for women than men,” she says. “We see things differently, we feel things differently, we experience things differently. We experience diseases differently, even when it’s the same disease.”
As a caregiver, movement disorders specialist, and person with Parkinson’s, Maria has a lot of great advice for people living with the disease, especially women. Her first piece of advice is to remember that you know your body. So, if you know something isn’t right, keep finding and talking to people until you get the answers you need.
“Don’t settle for ‘it’s psychological’ or ‘this disease doesn’t happen to women or young people,’” she says.
Once you find a provider who listens, work on building a relationship with them. Remember that developing a relationship doesn’t happen instantaneously.
“It takes time for a provider to get to know you, your symptoms, and how your disease progresses,” Maria says. “If you go doctor to doctor, you don’t get to build a relationship.”
Once you build a relationship with your provider, Maria advises to “ask salient questions about your life. If you’re a woman who wants to have kids, for example, talk to them about what that might look like and what you need to be aware of. It’s important to be proactive.”
For Maria, it was also important to her to lead by example.
“At first, I didn’t want to be seen as someone who has Parkinson’s,” Maria says. “But what do I tell my patients? I tell them to embrace it. So, I made a T-shirt that says ‘I make Parkinson’s look sexy.’”
You can view a photo of Maria wearing her T-shirt on her website parkinsonsdiva.org, where she offers resources for women with Parkinson’s.
In partnership with our Platinum Partner
We loved seeing our friends and meeting new ones at the BGF Mix & Mingle gathering on Thursday, July 25, 2024. Being social is an important part of living well. We look forward to the next opportunity!
See the debut of the profound work crafted by people living with Parkinson’s and care partners during this year’s storytelling workshop. These short videos capture a personal and sincere glimpse into what life with Parkinson’s looks like for them. During this special webcast, we watched the videos then heard the stories behind the stories from the people who made them.
Cooking for people with Parkinson’s disease can present challenges in the kitchen, affecting a person’s ability to chop, stir, and maneuver around the stove.
The presentation was led by Christine Ferguson PhD, RD, CSG, Assistant Professor, Dietitian Education Program, Assistant Director at the University of Alabama at Birmingham. Dr. Ferguson will focus on solutions to make cooking easier for people with PD.
By Theresa Harczo, RN, Providence Brain and Spine Center, Portland, OR
Living in Oregon means living through four distinct seasons every year. Seasonal changes in temperature, sunlight, and activity can affect people with Parkinson’s in unique ways. Read on for tips to manage these changes and make the most of the summer months.
Be SUN responsible
Sun exposure is great for improving your mood, regulating your sleep cycles and emotions, boosting your immune system, and more. (Source 1)
Remember to protect yourself with options like SPF clothing, sunglasses, sunscreen, and lip balm.
For Parkinson’s, sun exposure can be a natural way to support your mental health.
Beat the HEAT and HUMIDITY
When temperatures and humidity levels rise, your body sweats more. Dehydration can lead to orthostatic hypotension (drop in blood pressure upon sitting or standing up). Replace this loss with adequate hydration.
Remember that hydrating foods can help! Many summer fruits and vegetables contain high water content. Avoid spicy food, caffeine, and alcohol to prevent complications of dehydration such as fatigue, confusion, urinary tract infections, etc.
Parkinson’s can affect your body’s ability to regulate temperature. Take cool showers and keep cool by visiting air-conditioned spaces like libraries, malls, and theaters.
Find the best time and place to EXERCISE
Don’t stop your movement routine when the weather warms up! Try exercising in the morning or evening to avoid overheating.
Air pollution is neurotoxic to the brain and can negatively affect dopamine. If air quality is poor due to smog or smoke, use indoor exercise facilities to remain active. (source 2)
When enjoying shaded parks or other natural spaces, people with Parkinson’s should choose appropriate walking paths for their balance and mobility.
Plan ahead and stay flexible for VACATIONS and other TRAVEL
Set yourself up for success by taking a vacation that matches your mobility and aligns with your interests. Consider requesting wheelchair transport between flights. Some airports offer free daisy lanyards which are recognized by airport staff in many countries that you may need some assistance. All to help improve your experience and return home with great memories!
Bring essential medications and supplies in carry-on luggage and consider time changes when planning medication doses.
Plans may change! Be aware that travel activities or climate conditions may change, which can affect your Parkinson’s symptoms. (Source 3)
