My PD Story

Michael_Kruger.jpeg
People with PD

Michael Kruger

My journey with Parkinson’s disease (PD) began a couple of years before my official diagnosis. I was 57 years old. My first thought that I may have Parkinson’s occurred when a colleague asked me why my hand was shaking. I thought that my sugar level was low, so I went and got a Coke. I now know the tremors in my right hand were not due to decreased sugar levels.

I had other symptoms as well, including cramping and fatigue. My handwriting also changed dramatically and became very small, sloppy and sometimes unreadable. I’ve had to retrain myself to write slowly and legibly. Additionally, my sleeping pattern changed and my right arm stopped swinging when I walked.

About a month or so later, I was at my annual physical and I mentioned the hand tremor to my primary care physician. She asked me to hold my hands out, and eventually said she wanted me to see a neurologist. At that moment, I knew I had Parkinson’s. I made an appointment. After a two-hour assessment, the prognosis was that I had young-onset Parkinson’s disease (YOPD). February 21, 2017, became my Parkinversary.

Even though I thought I had PD before my diagnosis, I was still in shock. I was scared; the more I read, the worse I felt. But one day, I decided to change my mindset and embrace my diagnosis. I did more research and got involved with the Maryland Association for Parkinson’s Support, eventually becoming a board member. This experience led to me to learn about the Parkinson’s Foundation and Moving Day, A Walk for Parkinson’s. I attended Moving Day Baltimore with my family; it was a great, educational experience.

I ended up taking early retirement due to my demanding, stressful, high-pressure and high anxiety job. Working only made my symptoms more noticeable and advanced my disease progression.

Six years later, now at 62 years old, my progression has slowed. I’m in the best shape I’ve ever been in! We moved to South Carolina, and I found a gym that offers Rock Steady Boxing. I organized a team for Moving Day Charleston, recruiting the twelve people in my boxing class as team members. Our team raised more than $5,000 to help the Parkinson’s community!

Now I work out about five times per week — Monday, Wednesday and Friday I start with a 30-to-45-minute stationary bike ride or some other cardio workout, and then I go to a Rock Steady Boxing class for about 75 minutes. Tuesday and Thursday, I work out at home for about 60 to 90 minutes. Saturday and Sunday, I do a lot of walking. Exercise is the best non-prescription medication for Parkinson’s disease ­— you don’t need a referral. I also enjoy taking walks with my wife, who is my extra set of eyes and ears.

I take my Parkinson’s medication as well as anxiety medication. For hobbies, I enjoy cooking (especially grilling) to make healthy meals, as well as going to concerts and tending to my vegetable garden. I make time for family, friends and myself. I also talk to people who are newly diagnosed with Parkinson’s and help them realize that living with PD is an adjustment, but life is not over. Parkinson’s is not a death sentence; if managed correctly, you can still have a good quality of life.

PD taught me that a positive attitude will go a long way, and that we should live life to the fullest. We are all Parkinson’s Warriors, always fighting, always courageous and always surviving. Parkinson’s disease will not define us — our courage and strength will! Keep up the fight!

We Care. We Fight. We Move. Find a Moving Day event near you.

Educational Events

Managing Changing Symptoms: Motor Symptoms

12:00 pm to 4:00 pm EST
FREE
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Check-In begins at 12 p.m.

After many years of good symptom management, Parkinson’s disease may become more challenging.  Learn how Parkinson’s symptoms may change over time and new strategies available for managing them. This event will focus specifically on Motor Symptoms.

Speakers:

Leslie J. Cloud, MD, MSc

Jessica Lehosit, DO

Paul Koch, MD

There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Managing Changing Symptoms

Virtual ( Zoom )
10:00 am to 2:00 pm EST
FREE
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In-person check-in begins at 10 a.m.

After many years of good symptom management, Parkinson’s disease may become more challenging.  Learn how Parkinson’s symptoms may change over time and new strategies available for managing them. 

Speakers

Dr. Justin Martello

Dr. Jill Farmer


For in-person attendees: Check-in starts at 10 a.m.

For virtual attendees, via Zoom: The live stream starts at 10:30 a.m.


There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.


This event has now reached capacity for in-person participation. We apologize for any inconvenience. To be placed on a waitlist, please contact Kelly Nicoll at knicoll@parkinson.org. You may also join virtually via Zoom by registering here.

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Parkinson's Research and Care

9:00 am to 12:00 pm PDT
Free
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Join the Parkinson’s Foundation to learn about current and emerging research in Parkinson’s disease (PD). Participants will hear how research helps shape treatments and identify new care strategies for managing Parkinson’s symptoms.  

*This program may include moderately scientific terms and concepts.

Speaker

Zoltan Mari, MD, FAAN
Cleveland Clinic Lou Ruvo Center for Brain Health, a Parkinson’s Foundation Center of Excellence 

This program is free and is open to individuals with Parkinson’s, their loved ones, and the community. There is no charge to attend, but registration is required as in-person seating is limited.

The Parkinson’s Foundation Southwest Chapter is grateful for the unwavering support of our Chapter Partners and Sponsors. Learn more about them by visiting our Chapter Supporter webpage

Sponsor

Seed for Success

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Managing Changing Symptoms

Virtual ( Zoom )
1:00 pm to 4:00 pm MDT
Free
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After many years of good symptom management, Parkinson’s disease may become more challenging.  Learn how Parkinson’s symptoms may change over time and new strategies available for managing them.

Speakers

Nadine Nye, SLP
Intermountain Healthcare

Paola Testini, MD
University of Utah, Parkinson's Foundation Center of Excellence

This program is open to people with Parkinson's, their family, friends and the community. There is no charge to attend, but registration is required as in-person seating is limited. 

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Raise Awareness

5 Honest Reactions to a Parkinson’s Diagnosis

Nothing can prepare you for when you hear the words “you have Parkinson’s.” Everyone reacts differently when receiving a diagnosis. From confusion to relief, however you feel after you or a loved one has been diagnosed is completely natural.

In this article, we outline five common and honest reactions people have after receiving the life-changing news that they now must adapt to a new life with Parkinson’s disease (PD).

1.  Confusion

Wrapping your head around a medical diagnosis, understanding what comes with the diagnosis and making related decisions — such as where to seek care and when to start medications — can leave you feeling confused and anxious. This is especially common if you do not feel that you understand what to expect from your life with PD.

Radhika Iyer headshot
MY PD STORY: Radhika Iyer

I walked into the room, the neurologist looked at me, had about a 20-second conversation and immediately said ‘Here’s Sinemet. Start the medication,’ That shocked me. I left the appointment with a prescription and little understanding of what a Parkinson’s diagnosis meant.

Learning more about the disease can help you settle into the diagnosis and your new life with Parkinson’s. Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson's questions.

2.  Despair

Feeling devastated by the news of a diagnosis, especially if you don’t understand what it means or what to expect, is an understandable reaction. You may feel angry or depressed, perhaps resentful that this happened to you or regretful that you did not appreciate life before PD. This reaction is normal, and these feelings won’t last forever. Allowing yourself to feel them and move through them can help you find your new path forward.

Todd Bischoff looking down
MY PD STORY: Todd Bischoff

'I'm sorry. You have Parkinson's disease.’ I stood in the parking lot, the receipt flapping in my trembling hand, completely stunned by the words I had just heard. At least my neurologist had the courtesy of saying, ‘I'm sorry’ before delivering the news. Still, it didn't seem to lessen the blow any. I felt like someone had reached into my chest and squeezed all the air out of my lungs.

When Todd connected with others living with Parkinson’s, he began to feel less afraid and more comfortable with thinking about the future. He felt accepted by the PD community and strengthened by its camaraderie.

Find your Parkinson’s community by locating the nearest Parkinson’s Foundation Chapter. Our Chapters educate the community about PD and raise awareness and funds through activities, such as Moving Day walks, Parkinson’s Revolution indoor cycling experience and educational programs to help ensure that people with Parkinson's, their families, and caregivers live their best life possible.

3.  Denial

This can look different from person to person, but if your loved one is in denial after diagnosis, they may refuse to talk or learn about PD. They may hold unrealistic expectations about treatment or the progression of the disease, or they may seek out opinions from multiple doctors in a search for any possible explanation for their symptoms other than PD.

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MY PD STORY: Rich Clifford

The doctors explained I had several tests ahead of me. PD was a clinical diagnosis and confirmed only by eliminating — through tests — all other neurological disorders. The test results came back negative. The doctors were right: I had PD. But my only symptom was that my right arm didn’t move when I walked. It seemed impossible. I didn’t want to believe it, and for a while I refused to believe it.

Rich didn’t feel comfortable sharing his diagnosis for years. If you are not ready to talk about Parkinson’s with those closest to you, consider joining PD Conversations, a place to ask  questions, connect with others living with the disease and be part of a network of support without sharing your diagnosis publicly.

 4.  Relief

After experiencing worsening symptoms for years, being misdiagnosed, or suspecting you have something worse than Parkinson’s, your diagnosis may have come as a relief. You may find unexpected comfort in knowing you have an answer that makes sense and relief to have a neurologist and care team that can help you chart a course for treatment.

Margrethe Hansen in pier by boat
MY PD STORY: Margrethe Hansen

When I was diagnosed, it did not come as a shocking surprise. Working in a pharmacy for 32 years I knew something about Parkinson's disease and the first signs: difficulties when typing or writing, no swing with one of the arms. But the neurologist wanted me to take a scan ‘just in case’ … I was relieved when my diagnosis was ‘just Parkinson’s.’

Armed with a diagnosis, you’re ready to set personal goals based on what is most meaningful to you! Read more about setting specific, realistic goals for yourself with our 5 steps to Living Well.

5.  Resolve

Living well with PD is possible. A diagnosis and receiving PD-tailored care can help you to feel motivated and ready to embrace this new chapter. Whether you are ready to set an exercise routine, prioritize a healthy diet, or get involved as a volunteer or research participant, we can help you get started.

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MY PD STORY: John Andrejack

In 2015 I was officially diagnosed with Young-Onset Parkinson’s disease. My doctor is an amazing person who recommended that I get involved with the Parkinson’s Foundation. In 2016, I completed my training and became a Parkinson’s Foundation Research Advocate. I was encouraged to get involved in many projects and patient panels. Through my involvement with the Foundation, I became connected to a community of caring and knowledgeable individuals.

Ready to get involved? Learn about volunteering with the Parkinson’s Foundation or help advance Parkinson’s research when you enroll in our PD GENEration study!

Top Newly Diagnosed Resources

Check out our tools specifically designed for anyone who has been recently diagnosed with Parkinson’s.

  1. New to Parkinson’s: this webpage has information and links to valuable resources.
  2. Helpline: contact us at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to specific Parkinson’s questions or referrals to local PD specialists and classes.
  3. Find resources In Your Area: find a PD specialist and resources near you and get connected with your local PD community.
  4. Living Your Best Life: A Guide to Parkinson’s Disease: this book is filled with tools to help you process and cope with Parkinson’s. Download the book or listen to the audiobook.

As you process your or a loved one’s diagnosis, we are here to assist and empower you at every stage. When you’re ready, explore our Newly Diagnosed kit and start your journey to living well with Parkinson’s.

Educational Events

Managing Changing Symptoms

12:30 pm to 3:30 pm EST
FREE
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After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and how physical and occupational therapies can help manage these changes. 

Speakers

Becky Bernhardt, OTD, OTR/L, C/NDT, CAPS

Katrin Ramsey, DSc, PT

Agenda:

12:30 p.m. – check-in, visit with our exhibitors, refreshments

1:15 p.m. to 3:30 p.m. – Managing Changing Symptoms presentations

 

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Educational Events

Managing Changing Symptoms

12:00 pm to 3:00 pm EST
FREE
The referenced media source is missing and needs to be re-embedded.

After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and how physical and speech therapy can help manage these changes. 

Speakers

Dr. Samantha Carty, PT, DPT

Shannon Smith MS, CCC-SLP

Agenda:

12 p.m. – check-in, visit with our exhibitors, lunch

1 p.m. to 3 p.m. – Managing Changing Symptoms presentations

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Raise Awareness

Meet Our Volunteers Making Life Better for People with Parkinson’s

Every Parkinson’s Foundation volunteer helps us make a difference in the lives of people with Parkinson’s disease (PD). This year, we celebrated our top volunteers with a prestigious national award. Meet our 2023 National Volunteer Awardees and let their empowering stories inspire you.

Paul Oreffice Volunteer of the Year

Jim Morgan and wife

Jim Morgan
Florida Chapter

Jim was diagnosed with Parkinson’s disease 16 years ago. Shortly after, he found the Parkinson’s Foundation. Since his first encounter, Jim has been continuously involved with the Foundation and is a leader in helping us fulfill our mission to make life better for people living with Parkinson’s. He demonstrates the selfless and valuable contributions that volunteering makes to our community. He has made a substantial impact, not only in his own community but on a national scale.

“To be associated with an organization that is truly making a difference in people’s lives every day is an honor and a privilege. I am sincerely honored and humbled to be selected as this year’s Paul Oreffice Volunteer of the Year.”

READ JIM’S STORY NOW


Rising Star

Mark Milow holding a puppy

Mark Milow
Southwest Chapter

Mark is a Parkinson’s Foundation Ambassador and a member of the Southwest Advisory Board. After being diagnosed with young-onset Parkinson’s, he has made a dramatic initial impact in the Parkinson’s community and goes beyond what is expected to help the Foundation reach more people. He is passionate about helping the Foundation make a long-term impact.

"I am truly honored and humbled to receive such an award! Especially when so many people are working to raise awareness and to help people with Parkinson's across the country. I wouldn't receive an award like this without the love and support of my close friends and fellow "Parkies" who inspire me with their strength and who help lift me up when I need it."

READ MARK’S STORY NOW


Top Fundraiser

Karan Rai running a marathon

Karan Rai
Rocky Mountain Chapter

Karan raised more than $80,000 as a Parkinson’s Champion upon completing the elite World Marathon Challenge this year. That’s seven marathons in seven continents in seven days.

“In part, it is to test myself and my boundaries mentally and physically. More importantly, it is to raise awareness and funds for Parkinson’s Foundation and to honor my dad, who has been living with this condition for the past six years.”

His amazing accomplishment puts him among just 200 people in the world who have completed this challenge, and he was able to spread awareness as he shared his journey, appearing on several news stations. In a special moment and the culmination of all his hard work, he presented all seven finishing medals to his hero and inspiration, his father, Rajit. The funds Karan raised help the Parkinson’s Foundation advance research that can lead us to a cure.  

READ KARAN’S STORY NOW 


Community Service Award

Benjamin Bement headshot

Benjamin (BJ) Bement
Gulf Coast Chapter

BJ serves the Parkinson’s Foundation in numerous impactful ways — this year, he has completed more community service hours than any volunteer, coming in at 189 hours! He serves on the People with Parkinson’s Advisory Council, Gulf Coast Chapter Board, as Chair of the Moving Day Baton Rouge planning committee and a Parkinson’s Foundation Ambassador.

"It isn't about the number of hours; it is about the number of connections made and resources provided. I will provide as many hours as I am capable of to maximize those connections whenever and wherever necessary."

READ BJ’S STORY NOW

Ready to make a difference?

Discover the many ways you can help the Parkinson’s Foundation. Become a Parkinson’s Foundation Ambassador and volunteer in your chapter. Let us help you design your ideal volunteer experience. Email us at Volunteer@Parkinson.org.

Already a volunteer? Make sure you report your hours at Parkinson.org/Volunteer-reporting so you can be in the running for our community service award next year!

My PD Story

Benjamin Bement headshot
People with PD

Benjamin ‘B.J.’ Bement

I’m Benjamin ‘B.J.’ Bement. I was diagnosed with PD in October 2013 at the age of 44. 

I was employed at a chemical plant for 18 years. Leading up to my initial symptoms I had taken three rounds of strong steroids in 2012 in response to three health issues that include a pinched cervical nerve with neuropathy, severe bronchitis and an adverse reaction to blood pressure medication. I left work on New Year’s weekend unaware I would not be returning.

After the hives and swelling abated, my energy and stamina did not return. My fatigue grew worse. I could not walk more than 100 yards without feeling like I would collapse. I stabilized myself with a cane or hanging onto a shopping cart at the store. I was too weak to pass the pulmonary test to resume work. 

I started an aggressive search for answers. Over the next 10 months, I would see 14 different specialists and make more than 100 visits to doctors’ offices or labs. I wouldn’t take, “I don’t know” for an answer. 

My general practitioner took 14 vials of blood to conduct every test he could think of. They all came back negative. My cholesterol, blood pressure, blood sugar and everything else were okay for a man of my size.

About five months later, I picked up a CD, splaying my fingers out to grip the wide plastic case. My hand started wavering backward and forward. I immediately thought it was probably something neurological.

It took a couple of months to see a general neurologist. He pursued multiple sclerosis tests, which came back negative. He referred me to a movement disorders specialist (MDS) [a neurologist with specialized training], who ordered a DaTscan to ‘rule out Parkinson’s,’ but it was positive. 

The MDS placed me on carbidopa/levodopa, which resulted in immediate improvement, confirming the Parkinson’s disease (PD) diagnosis. I was put on short term, then long term disability. Although I had good benefits, they wouldn’t last forever, so I hired a lawyer to handle my Social Security filing. 

I entered the holiday season of 2013 without a path forward. I had a four-month pity party mourning the loss of my past life. After the last holiday and the last football game, I had nothing else to distract me.

I began to search online for answers. I stumbled across a support group on Facebook and commented on some posts. A wonderful person named Michelle Lane replied and invited me to Washington D.C. for a Parkinson’s Action Network conference and Hill Day. I had no idea what to expect and was scared to meet people who were further along than me. 

After I arrived, I saw there was nothing to worry about. Over the next three days I saw many people with more advanced symptoms being extremely passionate, active and hopeful. This began my advocacy journey. 

Benjamin Bement at a PF booth

I have since worked with many organizations and committees. I am in my third year of serving on the People with Parkinson’s Advisory Council for the Parkinson’s Foundation, my first year on the newly formed Gulf Coast Chapter Board, and my fourth year as chair of Moving Day Baton Rouge.

I have many ideas that I would love to see take life. Although I have been in advocacy for almost 10 solid years, I feel I am just getting started.

I could not make this journey without my awesome wife Kelly, my family, my church family, my local PD support group members, and the Parkinson’s Foundation staff.  Here’s to another 10 years of new beginnings.

Benjamin is a Parkinson’s Foundation volunteer who received our Community Service Award in 2023. Meet our top volunteers and explore ways to get involved today.

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