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Kevin Schaefer replied to the topic DBS surgery forum in the forum Parkinson's Disease alternative treatments 1 month ago
Hi Linda, we can’t recommend doctors here since this is a public forum, but you’re welcome to direct message other members. Thanks!
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Kevin Schaefer started the topic Day 30 of #30DaysofPD: A Heightened Awareness in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Alan MacKenzie’s story.
Alan’s Parkinson’s diagnosis put a halt to his retirement plans and forced him to adapt. He had many challenges to face with his new reality, but he’s also developed a heightened sense of awareness. He’s learning to let go of unrealistic expectations and take things as they come.
Here’s an excerpt, “Part of…[Read more]
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Kevin Schaefer started the topic Day 29 of #30DaysofPD: How Parkinson’s Affects the Body’s Dopamine Levels in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Brian Reedy’s story.
Brian writes about how living with PD is more complicated than most people realize. In particular, he shares how a lack of dopamine affects people with Parkinson’s. It affects communication and the part of the brain that produces the “feel-good factor” in daily life.
Here’s an excerpt, “Your personality may ha…[Read more]
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Kevin Schaefer started the topic Day 28 of #30DaysofPD: The Circus That Has Become My Life in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Lori DePorter’s story.
Lori compares living with PD to life in the circus. There’s the unpredictability, the chaos, and the constant interruptions. Through it all, she’s grateful for the community of people along with her for the ride.
Here’s an excerpt, “So I guess I am the clown car. I put on a happy face. I keep appearing over a…[Read more]
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Kevin Schaefer started the topic Day 27 of #30DaysofPD: People With Parkinson’s Disease Are My Leitmotif in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Maria de los Angeles Bacigalupe’s story.
Maria has been working with people in the Parkinson’s community for years as a medical researcher. She’s learned that every individual with PD is different and that their needs should be treated as such. She understands the power of community and empathy.
Here’s an excerpt, “In all my yea…[Read more]
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Kevin Schaefer started the topic Day 25 of #30DaysofPD: Learning to Afford Myself Patience and Grace in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Nikki Louiselle’s story.
Nikki writes about the long road to receiving her PD diagnosis and her life since. Though her new reality was difficult to accept initially, she’s learned to adapt. With each day, she practices patience and gratitude. She also writes about being present for her four children.
Here’s an excerpt, “I want them t…[Read more]
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Kevin Schaefer started the topic Day 20 of #30DaysofPD: We Can Help Address Parkinson’s in Our Own Unique Way in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Mike O’Connor’s story.
When Mike retired a few years ago, he and his wife became “bucket list adventurers,” dedicating their time to travel and photography. Mike then received his Parkinson’s diagnosis in spring 2020. Between this and the COVID-19 pandemic, they had to adapt.
Shortly after, Mike spoke to a camera club in Ontario abo…[Read more]
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Kevin Schaefer started the topic Day 18 of #30DaysofPD: My Parkinson’s Support Group Brings Shared Experiences in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Patrick Pelkey’s story.
Patrick first heard about woodcarving while participating in a Parkinson’s support group. This sparked a passion in him, and he is grateful for the community that he found in PD groups. He’s also gotten into advocacy and took part in numerous fundraising events.
Here’s an excerpt, “I tell people not to fee…[Read more]
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Kevin Schaefer started the topic Day 13 of #30DaysofPD: Keep Moving Forward With a Sense of Humor in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Tommy Stringer’s story.
Tommy recently resigned from his position in the South Carolina House of Representatives after 13 years. He jokes that Parkinson’s is the only progressive thing about him. Throughout his PD journey, he’s used humor as a primary coping mechanism. He also writes about his DBS surgery in 2019, and other treatment t…[Read more]
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Kevin Schaefer started the topic Day 11 of #30DaysofPD: Deep Brain Stimulation Gave Me Back My Life in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Christine Scheer’s story.
Christine received a life-changing call from her physician on her 60th birthday. She was scheduled for deep brain stimulation surgery, an operation that drastically improved her quality of life.
As Christine’s Parkinson’s symptoms became more prevalent, she knew she needed a change. While the surgery is by…[Read more]
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Kevin Schaefer started the topic Day 6 of #30DaysofPD: I Can Fight for Change to Help Those in the Same Boat in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Julie Fitzgerald’s story.
Julie writes about dealing with the initial unpredictability and overwhelming nature of Parkinson’s. However, she eventually channeled her struggles into advocacy. She joined with other advocates in 2019 for a nine-day hike in Sicily to raise awareness for both PD and Alzheimer’s. Julie believes in the power o…[Read more]
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Kevin Schaefer started the topic Day 4 of #30DaysofPD: Parkinson’s Has Given My Life Increased Definition in the forum 30 Days of Parkinson’s 1 year, 1 month ago
This is Mike Krukar’s story.
Mike relates living with Parkinson’s to an adventure that he can’t quite pinpoint the beginning of. He writes about early symptoms, the diagnosis stage, and the transition from denial to acceptance. Through it, all, faith and family have been instrumental parts of Mike’s story.
Here’s an excerpt, “Park…[Read more]
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Kevin Schaefer replied to the topic Do you have any questions about the forums? in the forum Using our forums 1 year, 11 months ago
Hi Louis, are you referring to the links in the email newsletters?
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Kevin Schaefer started the topic Thoughts on States Reopening in the forum Coronavirus (COVID-19) and Parkinson’s 3 years ago
Hey everyone! Hope you all had a safe and relaxing weekend. For those here in the U.S., I wish you all a good Memorial Day.
So, as states and other places around the world begin to reopen, I wanted to get your thoughts. I don’t want to start anything political here. Rather, I’m just curious if anyone here feels comfortable going out som…[Read more]
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Kevin Schaefer started the topic COVID-19 and Post-Traumatic Growth in the forum Coronavirus (COVID-19) and Parkinson’s 3 years ago
So I’m sure you’re all pretty tired of hearing about COVID. Paying attention to the news right now is exhausting.
However, I did want to share this column about COVID-19 and post-traumatic growth. The author, Brianna Albers, is a writer for one of our sibling sites. She’s been writing about mental health coping mechanisms, speci…[Read more]
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Kevin Schaefer started the topic Motivation Monday: Setting Personal Goals in the forum Living With Parkinson's Disease 3 years ago
Hey everyone! Hope you all had a safe and relaxing weekend.
Today, I wanted to start a conversation about setting personal goals. Obviously, it’s an unusual time to even think about this subject. Between the COVID-19 pandemic and just trying to stay healthy, most of us aren’t focused on the future.
Still, I actually think it’s a great…[Read more]
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Kevin Schaefer started the topic Preparing for a medical appointment during the COVID-19 pandemic in the forum Coronavirus (COVID-19) and Parkinson’s 3 years ago
Since the COVID-19 pandemic is having a major impact on our healthcare services, we have to approach medical appointments differently than before. TeleMed and other virtual services could become the new norm. Still, some appointments and procedures need to be in-person. It raises questions about how we can best approach appointments with our…[Read more]
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Kevin Schaefer started the topic Book Recommendation: Disability Essay Anthology in the forum Parkinson’s Disease Awareness and Advocacy 3 years ago
Hey everyone! Hope you all had a safe and relaxing weekend.
I wanted to share this book with you all. This is a collection of essays from the New York Times disability series. The book’s contributors include people living with quadriplegia, chronic illnesses, blindness, and more. The idea is to give people with a plethora of visible and i…[Read more]
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Kevin Schaefer replied to the topic Online Therapy in the forum Coronavirus (COVID-19) and Parkinson’s 3 years, 1 month ago
Thanks for sharing Brian! Glad you’ve found a good alternative to in-person.
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Kevin Schaefer started the topic Online Therapy in the forum Coronavirus (COVID-19) and Parkinson’s 3 years, 1 month ago
Hey everyone! Hope you all had a safe and relaxing weekend.
I wanted to ask if anyone here does online therapy. With all of the stress and anxiety in the world right now, it’s as good a time as any to focus on mental health. And since we’re all on lockdown, online therapy is a great alternative to in-person appointments.
There’s one s…[Read more]
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