Parkinson’s Connect: Empowering Through Mentorship in SW Florida

I am very involved with researching Parkinson’s problems and possible solutions. I am a lead person with our support group that has unlimited knowledge. I believe i have the empathy to help others navigate this journey as a caregiver.

Contact Michael:

My wife, Joyce, was diagnosed with Parkinson’s disease in 2008. In 2017 a fellow PD Caregiver and I formed Mind and Motion (M&M), a Parkinson’s Support Network in Marion Cty, Florida. I established a Partnership agreement with the NeuroChallenge Parkinson’s Foundation in 2018. The main mission of M&M is PD Education, Fitness and Exercise, and Support for both People with Parkinson’s and Caregivers. I manage and coordinate M&M’s Caregiver Support sessions, and often field telephone calls with couples wherein there has been a recent PD diagnosis. I also have two revered adult children who are part of our PD team, in Virginia and Colorado.

• Born in Montreal, Quebec Canada (1940), Schooling -up to High School graduation in Canada.
• Acquired Private Pilot license in Canada (1957) and US.
• BSc Aero Maintenance Engineering, Northrop University, Inglewood, Calif (1960-’64)
• MBA, University of New Haven (1973)
• Project Engineer, Avco Lycoming, Stratford, Conn. (1967-‘73)
• Owned and operated the William Seward Inn in Westfield, NY. (5 years)
• Project Engineering, Purchasing management, International Marketing, Westinghouse Electric Corp. ( 1973-2002), Power Generation Divisions, Concordville, PA, and Orlando, Florida. Position before retiring – Manager of Service Marketing, Europe, Africa, Middle East.
• Retired 2002

Contact Peter:

My wife Sheri and I moved from Nebraska to Carlsbad, CA in 1999. We were semi-retired after I left the corporate world and we sold the fine dine restaurant that we owned and Sheri managed for 16 years. After a year we both accepted jobs with our church. I became the Controller and IT Manager and Sheri was the Administrative Assistant to the Missions pastor and the Life After 50 ministry. In 2006 Sheri was diagnosed with Parkinson’s disease. We weren’t too concerned since her father had Parkinson’s disease and did fine. Her disease progressed slowly and her symptoms increased each year. She had dyskinesia, bradykinesia, “freezing”, Parkinson’s dementia, and Parkinson’s psychosis as well as restless leg syndrome. By 2016 I became her 24/7 caregiver. God took her home in September 2019 after 58 years of marriage. Along the way I learned so much about how to lovingly care for the love of my life and face the challenges that Parkinson’s disease presents on the journey. I am retired and continue to volunteer with the Care ministry at my church.

Contact Art:

My name is Bonnie Wagner and I am 71 years old.  I retired from my corporate job as a HR Director at age 64, one year after my husband, Rusty was diagnosed with PD.
When not involved with this insidious disease, I enjoy studying the Bible, hiking, gardening, walking, traveling, entertaining, learning Spanish, and caring for our 9-month-old grandson, Luca.  As you can see, there is not much room for PD.

Slowly, over the years, my role as caregiver increased greatly, until about two years ago when we brought caregivers into our home.  It was a game changer.

Rusty’s needs take precedence.  His major challenges are falling, fainting, shortness of breath, and cognition.  He needs constant watching.  However, thanks to caregivers, I try hard to protect my time for walking, going to the gym, morning devotionals, and some of the items listed above.

I consider myself to be tenacious when it comes to advocating for Rusty.  That means we’ve changed physicians more than once.  We’ve traveled to AZ and CA to meet specialists and flown to the east coast for specialized procedures.  I obtained an assistive walking device when Medicare denied us.  I search out and use non-profits to pay for Rusty’s expensive meds.  I push for physical therapy in the home. I’ve advocated for those more expensive meds.  All this is not to brag about my actions; rather it is to let others know that our PD experience involves work.  Even when Rusty is not able or willing to seek out positive actions for himself, I need to do it rather than give in to the disease.

Other times, I’ve reached the end of my rope.  I’ve given up chasing him every time he walks away from his walker, or arguing about drinking more liquid, or when he insists in walking down stairs instead of a ramp.

More than all of this, I depend upon my faith to get through each day.  My God is good and guides me and the man I love.

Contact Bonnie:

My husband was diagnosed with Parkinson’s in 2017. I retired shortly thereafter and have been focusing my attention on providing the best care I can. In addition to the prescribed medication, we focus on strength training/movement as well as mental health. We feel that this regiment has been very helpful in adapting to the disease. We have also been able to manage his freezes by understanding how and when they are likely to occur – i.e. confined spaces, thresholds etc. When these occur, we have found that counting to five after coming to a complete stop enables him to start moving again.

I would like to help other care partners try to manage the disease with what has worked for us over the years. We have been through multiple stages of the disease and have focused on adapating as best we could to these progressions.

Contact Bridget

My husband was diagnosed with PD 22 yrs ago. Last yr he had prostate surgery, bladder cancer and treatment. After that his symptoms worsened very quickly. More falls, mobility, hallucinations, delusions, bladder control, apathy, weight loss, vision problems, ER visits, confusion, etc. I had never asked for help until last year. I felt desperate and alone. I started asking for help. I hope I can be there for others to listen and let them know they are not alone.

Contact Cindy:

The tremors started seemingly out of the blue, the diagnosis was made, but it wasn’t for another couple years that I realized life could go on with joy, purpose and meaning in spite of and because of PD. With the loving support of my husband, friends and members of the Parkinson’s support group we belong to, my world has expanded to include knowledge of the disease, treatment options, healthy lifestyle choices and hope for the future. Having just completed the DBS surgery and programing, I am looking forward to hours of increased on-time, fewer hours of dyskinesia and tremor and less medicine.

Retired elementary school teacher, wife of husband Aaron for 40 years, mother of three children in their 30s, and grandmother of four, I love to read, hang out with friends, putter around in my garden, travel, and play with the grandkids.

Contact Diane:

Edna Culp from San Diego, CA is an Advance Practice Nurse/Clinical Nurse Specialist with focus in adult Gerontology, currently affiliated with University of California San Diego Health. Edna was married to Mark who was diagnosed with Parkinson’s Disease in 2000 when they had been married for 10 years. They lived with this uninvited guest in their home for more than 20 years.

This has become a life of service and there is passion, joy and reward in sharing with others what was experienced and learned down this difficult road.

Contact Edna:

After my retirement, my husband was diagnosed with Parkinson’s, with Lewy Body dementia eventually added to the DX. Prior to that we were overseers of his mother’s Parkinsons caretaking. In the 8 years of being his caretaker, I learned much about my role and about PD from him (both as a patient and as a retired physician). People skills, caring, listening, patience, time management, gratitude for the joyful, happy times are some of the things I learned on this journey. Now I want to share what I learned with other caretakers.

My B.S. degree is in Business Administration. Work experience includes public schools, interfacing with students, staff, and parents daily, often in unscripted situations.

Contact Elaine:

I have been a primary Care Partner for my loved one for the past 15 years,  We have experienced and learned much on this Parkinson’s journey.  I compare the journey to a river.  Early symptoms progress slowly and life is smooth  for the most part. As the journey progresses from calm still waters to running stream and encountering rough waters & surprise waterfalls down stream.  I have learned to be flexible and do all I can to prepare.

I am a Support Group leader of a local NCPSG chapter, attend PD seminars, and participate in Care Partner group meetings.

I worked in the Hospitality Industry part time for 6 years, after retiring from working 33 years in retail management for JCPenney at the store, district and corporate level.

I have a passion for people and my life mission to serve others.

Contact Irene:

We were introduced to Parkinson 35 years ago when Joe’s father was diagnosed. Prior to that we had barely heard of Parkinson’s, let alone understood what it was. We were not his primary caregivers, but took on an ever-growing set of responsibilities around his house so he could maintain his independence and quality of life.

Twenty years later, Stephanie’s mother was diagnosed. She stepped into the role of primary caregiver, doing the shopping, banking, cleaning, laundry, coordinating doctor’s visits and managing the medicine. Again, we assumed responsibilities around her house so she could maintain her independence.

Then eight years ago in 2015, Joe was diagnosed. He went home and crawled into bed for 2 days. Stephanie on the other hand went into action mode. Taking the lessons that we learned with our parents, we made an appointment at the Michigan Parkinson Foundation, researched the right neurologists for us, and looked for clinical research trial opportunities.

We are a team! Stephanie understands the progression and changes I am going through and adapts our lifestyle to accommodate. I am overwhelmed by her willingness to take on this challenge while keeping a positive outlook as we walk this journey together.

We live an active lifestyle, working part-time, visiting with friends, volunteering, golfing, camping, and exercising. We spent 3 months this past year traveling with our camper. We realize we are not in control, but we keep a positive outlook and believe we can make a difference. We do that by volunteering at organizations and related events, working on committees, talking with students in physical therapy programs and participating in clinical research trials. It is our belief that without an understanding of the disease; diagnosis, slowing the progression, halting, and ultimately eliminating the disease will not be possible.

Feel free to reach out to Stephanie as a caregiver, or myself as a person living my best life with PD, or both of us as a team.  We’d gladly share our experiences:

I am a Person with Parkinson’s who was diagnosed prior to my 37th birthday. Hearing those words, “You have Young Onset Parkinson’s Disease,” I’ll never forget those feelings of confusion, heartache and not knowing where to turn for help. I had three kids still in school and I was working full-time. Then I felt I didn’t exactly know what Parkinson’s meant but I didn’t have time for it.

I quickly learned over the last 8 years that my lifestyle was going to have to change as “Mr. P” (Mr. Parkinson’s) had its own plans for me. After going through the most unique and powerful self-observation, self-healing, Deep Brain Stimulation, I understood that this is simply a new chapter in my life.

I may not be able to skydive like I did before, but I’m learning how to navigate and enjoy life within itself. My perspective on most things is that I cannot lose my sense of humor. I am determined to make the rest of my years, the best of my years, one day at a time.

Contact Melissa:

I am very involved with researching Parkinson’s problems and possible solutions. I am a lead person with our support group that has unlimited knowledge. I believe i have the empathy to help others navigate this journey as a caregiver.

Contact Michael:

I am 64 year old, married, male. Diagnosed with PD in 2015, DBS in May 2022, please see my experiences below. I retired earlier this year. I would like to help others live their best lives with PD.

https://www.linkedin.com/in/cmichaelcosta/

Contact Mike:

My wife, Joyce, was diagnosed with Parkinson’s disease in 2008. In 2017 a fellow PD Caregiver and I formed Mind and Motion (M&M), a Parkinson’s Support Network in Marion Cty, Florida. I established a Partnership agreement with the NeuroChallenge Parkinson’s Foundation in 2018. The main mission of M&M is PD Education, Fitness and Exercise, and Support for both People with Parkinson’s and Caregivers. I manage and coordinate M&M’s Caregiver Support sessions, and often field telephone calls with couples wherein there has been a recent PD diagnosis. I also have two revered adult children who are part of our PD team, in Virginia and Colorado.

• Born in Montreal, Quebec Canada (1940), Schooling -up to High School graduation in Canada.
• Acquired Private Pilot license in Canada (1957) and US.
• BSc Aero Maintenance Engineering, Northrop University, Inglewood, Calif (1960-’64)
• MBA, University of New Haven (1973)
• Project Engineer, Avco Lycoming, Stratford, Conn. (1967-‘73)
• Owned and operated the William Seward Inn in Westfield, NY. (5 years)
• Project Engineering, Purchasing management, International Marketing, Westinghouse Electric Corp. ( 1973-2002), Power Generation Divisions, Concordville, PA, and Orlando, Florida. Position before retiring – Manager of Service Marketing, Europe, Africa, Middle East.
• Retired 2002

Contact Peter:

Sam is President of the North County Parkinson’s Support Group. He has been on that board for 9 years and serves as the leader of the La Costa support group. He was his wife’s care partner for their 22 year journey with Parkinson’s before she passed in 2018 from Parkinson’s Dementia. Sam and Ruth raised their two wonderful boys in Tucson where they both had careers in education. They enjoyed several years of RV trips throughout the American West and Canada. Sam took long motorcycle rides in the summer including one trip from Tucson to Banff, Alberta. They moved to Oceanside 10 years ago. Sam is available to mentor care partners who have dementia by email only.

Contact Sam (please note, Sam is available as a mentor by email only):

Sandy is a lifelong learner who enjoys sharing her knowledge and experiences with others. She is the care partner for her husband who was diagnosed with Parkinson’s in 2006. As Parkinson’s symptoms increased, they began attending support groups and enjoyed meeting people who were facing some of the same challenges. The information they learned made the Parkinson’s journey easier.

For the last few years she has served as a facilitator for the Oceanside Support Group Care Partners. She likes to develop friendships so that other care partners don’t need to feel alone. Sandy is still learning. She watches informative Webinars on Parkinson’s and Care Giving. She has been part of the UCSD Care Partners Research Programs and has learned the importance of taking care of yourself and some special techniques.

Contact Sandy:

I always want to help people find the positive side of Parkinson’s – the people they will meet and interact with. Diagnosed with PD in 2017 I’ve learned that fighting PD is most important and not a death sentence.

Contact Sarah:

The only thing I knew about Parkinson’s Disease was Michael J Fox but, in reality, I knew nothing about PD until my husband, Frank, was diagnosed in 2018. Up to this time, we led a pretty active social life, golfing, travel etc. I’m sure like most others in this situation, the initial signs were completely lost on us, but now, of course, make absolute sense. The small handwriting and hallucinations being the most prominent to start with, and right-side tremors followed. Because Frank could no longer drive, I retired from my fulltime office job to be at home with him. We’ve spent the last 6 years educating ourselves as much as we can and after 4 visits to the ER over the past year, have finally landed with a neurologist (our 3rd), cardiologist, and PCP (our 2nd) who we feel are providing us with the very best care/advice possible. This has been a scary and challenging time for both of us, coming to terms with this life-changing diagnosis, adjusting to our new lifestyle and setting achievable daily goals. But every day brings something new. And as strange as this may sound, this ‘something new’ is actually rewarding because we’re learning more and more about not only the disease but about ourselves, and how to cope on a daily basis with Parkinsons and each other. We’ve found that just taking one minute, one hour, one day at a time has been the best approach. My sincere wish as a Mentor to anyone with Parkinsons is to first, provide comfort and assurance they are not alone, and secondly to provide support and share knowledge with them, their family and friends about all the resources, information and events that our Parkinson associations have available. No one should have to take this journey alone.

Contact Talei: