Parkinson’s Connect: Empowering Through Mentorship in SW Florida

I was diagnosed with PD in 2015, a month shy of my 58th birthday. My main symptoms were stiffness, rigidity, and slowness of movement. I chose to continue working and tackled my new diagnosis with exercise and supplements. Six months later, I was in my car at a red light. When the light turned green it took what seemed like an eternity for my foot to press down on the accelerator. That day, I told Mark I was ready to start the PD meds.

In October 2015, I met a Care Advisor at the Neuro Challenge Foundation for PD. She shared info about the many FREE resources they offered. I left our meeting feeling hopeful! Mark and I immediately began attending support groups, dance classes, seminars, boxing workouts and Pedaling for Parkinson’s classes.

In 2016, I retired. For my sake and the sake of my family, it was time to do everything I could to keep my quality of life at the highest level for as long as possible. Fast forward to today, ”Team Murphy,” as I refer to our family, is 9 years into our PD Journey. We have learned that just taking the prescription medications is not enough to live a productive life with Parkinson’s.

I believe “It takes a village to navigate life with Parkinson’s”. Our Village includes: family, our PD friends, daily exercise, supplements, acupuncture treatments, massages & quiet time. Also a Spiritual connection is essential. Before I get out of bed, I thank God for the gift of another day, for the gift of my family & friends & for the GIFT of PD. Then I look in the mirror and say: PD…I’m going to kick your ASS today!
From the beginning of our PD journey, Mark and I recognized that the best way to deal with this diagnosis was with courage & a positive outlook. The last thing we wanted was for our kids to think that because life threw me a curve ball, I was going to strike out. On the days I feel sad, challenged, frustrated or angry. I remind myself: I have PD. PD doesn’t have me. PD doesn’t define me. Then I remind myself of my blessings!

Contact Carolina:

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:

I have been diagnosed for about 5 years. I exercise a lot! I spend about 20 hours a week at the YMCA. Most all the staff at the Englewood Y know that I have Parkinson. I recently passed my Group Fitness Instructor certificate course, the Y has hired me as a part time Fitness instructor, I have been team teaching the Parkinson Exercise class in Englewood for almost a year. Often the staff will bring members with Parkinson to me so we can talk.

Contact Rick:

At 43, while I was a full-time anesthesiologist, I was diagnosed with Parkinson’s disease.  I knew no one else my age in similar circumstances.  While I have a great neurologist and very supportive colleagues and coworkers, I often felt alone.

As I neared retirement I felt strongly that doing something meaningful would be key to my happiness and satisfaction. Furthermore, meaningful came to be defined as helping those newly diagnosed and suffering with the unknown future of Parkinson’s as well as spending time with the socially isolated.  For me, this journey is just beginning but my experience thus far has been much more positive than anticipated, deeply philosophical and ever humbling.

Contact Aaron,

I retired from a career in school and clinical psychology at the age of 67. Three years later, in 2017, I was diagnosed with PD. Looking back, there were some early signs that I had attributed to aging. Since then I’ve been on the path of continuous learning and frequently reminded of the power of sharing our PD experiences.

Several years ago my physical therapy clinic started an online support group for clients taking Zoom exercise classes (Rock Steady Boxing). Since then, another member and I have taken over facilitation of this weekly discussion group. I’d like to be able to give a listening ear to other PD folks and perhaps offer some insights from my experience. It’s important to keep an optimistic outlook and stay motivated!

I’m lucky to have a supportive wife and family. They recognize my efforts to keep moving every day. I’ll add that after playing guitar since about age 16, I gave it up when it became physically difficult. About that time my wife wisely got me a ukulele, which is easier. Maybe I can’t play as well as I used to, but I definitely can play. You will usually see me at one of the local ukulele group meetings.

This brings me to one of my principles. Think back to things you did that brought pleasure and satisfaction, and possibly brought you together with people. There may be ways to adapt that could surprise you!

Contact Andy,

I met my wife when we were both Disneyland employees and we have been married 50 years. I owned a running store for 5 years and then became a sales rep for ASICS Tiger for 12 years. I became the National Team Sales Manager, in charge of selling team shoes to schools and other entities. Retired on disability from Parkinson’s symptoms. Have undergone 6 major spine surgeries along with heart, brain, 2 shoulders and 1 knee surgery. I have a Deep Brain Stimulator. I’m the proud parent of 3 adult children. I’m on the Board of Directors of the Tremble Clefs, a singing based voice enhancer, and am a discussion group leader for the North County Parkinson’s Discussion Group. I teach a Bible study for people with Parkinson’s, called Movers and Shakers, and participate in 2 other weekly studies but I welcome interaction with people of any level of faith.

Contact Bill

I was diagnosed with PD in 2015, a month shy of my 58th birthday. My main symptoms were stiffness, rigidity, and slowness of movement. I chose to continue working and tackled my new diagnosis with exercise and supplements. Six months later, I was in my car at a red light. When the light turned green it took what seemed like an eternity for my foot to press down on the accelerator. That day, I told Mark I was ready to start the PD meds.

In October 2015, I met a Care Advisor at the Neuro Challenge Foundation for PD. She shared info about the many FREE resources they offered. I left our meeting feeling hopeful! Mark and I immediately began attending support groups, dance classes, seminars, boxing workouts and Pedaling for Parkinson’s classes.

In 2016, I retired. For my sake and the sake of my family, it was time to do everything I could to keep my quality of life at the highest level for as long as possible. Fast forward to today, ”Team Murphy,” as I refer to our family, is 9 years into our PD Journey. We have learned that just taking the prescription medications is not enough to live a productive life with Parkinson’s.

I believe “It takes a village to navigate life with Parkinson’s”. Our Village includes: family, our PD friends, daily exercise, supplements, acupuncture treatments, massages & quiet time. Also a Spiritual connection is essential. Before I get out of bed, I thank God for the gift of another day, for the gift of my family & friends & for the GIFT of PD. Then I look in the mirror and say: PD…I’m going to kick your ASS today!
From the beginning of our PD journey, Mark and I recognized that the best way to deal with this diagnosis was with courage & a positive outlook. The last thing we wanted was for our kids to think that because life threw me a curve ball, I was going to strike out. On the days I feel sad, challenged, frustrated or angry. I remind myself: I have PD. PD doesn’t have me. PD doesn’t define me. Then I remind myself of my blessings!

Contact Carolina:

I hooked up with my new buddy “Parkinson’s” officially in 2016. Since then, we go everywhere together, the good, the bad and yes, the ugly, While challenging, this journey has provided me the opportunity to meet so many great people and build a solid support group. I am a lucky guy!

Just like you, there are things in my life that are important. These things are my family, my friends, my coworkers, the Detroit Tigers, and MY WOLVERINES…GO BLUE!

I will tell you what makes me and my story different than the others. I have lived in Michigan 62 years. My first car was a Dodge Dart. I broke my neck and carried at 198 bowling average. I mow the lawn. I have gone through the challenge of telling my family, declaring at work and maintaining a full-time position, co-leading the disability support group at work, running a PD conversation group, buying a hi-rise toilet seat and medicine for constipation, making videos to promote understanding, helping organize the Grand Rapids Hero Walk, and being a caregiver for a family member with epilepsy. Through all of this, I have learned to be as comfortable speaking to a hundred people as I am to one. We can talk about anything and everything.

Maintaining a positive perspective is what gives me the strength to stand up and advocate for everyone in my community. Part of this is that I love my medical team. They have got my back. I laugh every chance I get. I love to kick PD’s behind every day. I love to see others do the same.

This is what I know: I have Parkinson’s. I know eating well and exercise are key to any health battle. I have an amazing network to help me stay in touch with what is going on in the world regarding PD and I pay attention. I take my meds and do not miss medical appointments. I listen, I read, and I figure out what works to win. Then I do it.

Why am I doing this? I want you to win. That means winning however you define it. Each step we take towards winning brings all of us closer to winning.

Contact Chris:

September 19, 2020, a date I will always remember, the date I was diagnosed with Parkinson’s. For me that word meant that my life was over, here I was 67 years old with a disease, that there was no cure for, and I was going to spend the rest of my life needing someone to take care of me. I was no longer going to be able to do the simple things in life that I took for granted.

I soon found out how wrong I was! I found a support group (Detroit Support Group). My neurologist referred me to Speech Pathology, Physical Therapy and Occupational Therapy. I also started exercising 7 days a week for at least 1 hour a day. The best medicine for PD is to get out and join groups to meet people that know and understand how you feel. I am now a part of Rock Steady Boxing (Parkinson’s Movement Center), Motor City Upbeats Therapeutic Singing Club, Water Aerobics, and I also started a personal Journal about my feelings concerning Parkinson’s which I named Fear Knocking at My Door. My best support is my family, they have been with me since day one of my PD journey.

I am inviting you to join me in this journey, together we can slow this disease down if not stop it all together.

Contact Deborah,

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:

When you first hear the diagnosis that you have Parkinson’s Disease, or even if you have had it for a period of time, your life is transformed right in front of you. You actually allow all the negative thoughts of “WHAT or WHY” flood your mind. All you can see is every false image of who you are and what you will become. All you really want is to feel good and to be accepted for the right reasons. So what is happening right now is that all the “HOPE” for your life is being shattered in your present & future self. It is being stolen from you, leaving you with nothing but emptiness.

I believe as mentors it is our calling to help by being diggers. “Blessed is the man who digs a well from which another may draw Faith & Hope”. We help find the answers for the persons who are caught up in the trap of Parkinson’s Disease. We are the ones who stand beside them as they find strength and peace in their hearts. When their hearts are strengthened they can look into the face of Parkinson’s and say, “You cannot define me. That is Jesus’s job.”

It will be 3 years ago this August (2022) that I was diagnosed with Parkinson’s Disease. I have learned in over 35 years as a minister that a strong support system is an absolute must. My wife, Lori, and my family are the core strength of my support system. I increase my endurance and mobility thru exercise programs, such as Big and Loud and Rock Steady Boxing, with coaches and others who have PD and have also become friends and encouragers. I’m a firm believer that with your faith and your strong support system you can be an overcomer.

My decades of experience working with individuals as a life coach, mentor, councilor, pastor, and helping others, often those with destructive behaviors, to see through the fog of a lifetime of bad choices, enables me to use these skills to help those dealing with Parkinson’s.

The Lord is not in love with a new version of your future self. He is in love with who you are right now.

Contact Howard:

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:

I believe I have a unique opportunity to speak as both a PD patient, diagnosed in September 2019 in my mid-fifties, and a care partner for my father, who also had PD, diagnosed in late 2020. I firmly believe that you must keep moving to slow down the progression, so I’ve embraced that philosophy to the fullest. I am a big fan of Rock Steady Boxing for PD, not only for the physical benefits but for the new friends you’ll make and the connections you’ll soon embrace. I also find great connections through a local PD support group I meet with monthly. I look forward to speaking to you as we navigate our PD journey.

Contact Jeff:

At the age of 42, after experiencing a tremor in her left pinky, Jennifer was diagnosed with Young Onset Parkinson’s Disease. Her first thoughts were shock and fear, as this diagnosis never crossed her mind. She knew nothing about Young Onset Parkinson’s Disease. Initially, her main concern were her young children and spouse and how the disease would impact their lives and their future.

While living with Parkinson’s disease can be challenging, she has never asked the question, “`Why.” Instead, she would rather focus on the “what”- What can she do to try and stay healthy both mentally and physically and also what can she do to help make a difference. With the help of her faith and her very supportive family and friends, she knows she will persevere. Rather than feel sorry for herself, she is determined to make something positive out of the situation. She is using her passion to provide means for continued awareness and research for a possible cure.

Shortly after her diagnosis, Jennifer decided she needed to be a voice and to bring hope to others battling with this disease. She started a non-profit organization; has successfully started a support group in Southeast Michigan; has held several successful fundraisers and has had a presence throughout the states of Michigan, Ohio, Illinois and Florida at Parkinson’s walks. On a day-to-day basis, the goal is to continue to bring hope, awareness and support to anyone touched by this disease.

Contact Jennifer

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:

As a PWP I feel that I am in a unique position to be of help to those in the Parkinson’s community. I used to be a very physically active person, competitive figure skating, ultimately ending up coaching. I also marched in the high school and college bands. I worked continuously from age fifteen until age forty four when I was diagnosed with Parkinson’s Disease. When I was diagnosed, I was eight years into my second career, having medically retired from the first. I have much to offer to my fellow PWP’s and am hoping that by sharing my story I can improve someone’s life and quell the fears that we face as we navigate our new normal.

Contact Kimberly

I am a Reno, Nevada native, with degrees from UNR, the New England Conservatory of Music and Cornell Law School. I was diagnosed with Parkinson’s in 2005, and eventually had to retire from both my music and law careers. I have, however, remained active in retirement, with fishing and other outdoor activities, woodworking and music composition.

Contact Mark

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:

66 years old, recently ended a successful 43 year career in the building material distribution industries.
Celebrated 43 year marriage anniversary in March 2021, five adult kids and two grandchildren.
Enjoy playing golf and some sort of physical exercise daily. Stay active managing rentals and co-manage my retirement programs. Strong faith in God.

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:

I have had Parkinson’s Disease for over eight years. I began showing non-motor and motor symptoms of Parkinson’s disease when I was about 50 years old, but I was not diagnosed by a neurologist until I was 55 years old. At that time was still working as a senior level executive with the the largest construction material supplier in the US.

I am married with three daughters, the youngest is in her second year of college. I put a lot of value in leading a healthy lifestyle, eating the right foods, exercising the mind and body, and remaining socially active in my local community. I was able to work until I was 61 years old and then I went on disability.

The wide range of experiences I’ve had since my diagnosis have really equipped me to be able to help people in a similar situation. What do I bring to the table personally? Dealing with a growing family was a challenge, my daughter was 12 years old when I was diagnosed. Negotiating through informing my employer about my diagnosis until leaving the company on my own terms 6 years later. Working a very high pressure and fast paced job while Parkinson’s began to affect my physical and emotional state. Obtaining SSA disability status and award. Staying informed about Parkinson’s disease through websites, podcasts, and my local support group. My personal experience with various therapists to stay ahead of disease symptoms and be as proactive as possible.

Probably the most important thing is I really believe in being the best person I can be in every situation. I believe the key to that is being a good listener – nothing is more important than that! And usually that’s what we all want, someone to listen to us and express some empathy. That’s what makes somebody a good mentor.

Contact Pat:

My father had Parkinson’s and was diagnosed at age 86 years young. I knew there was something wrong with myself but decided I would delay my diagnosis until my father passed. I was officially diagnosed with PD in 2009. I recently had DBS surgery which in my case benefited me greatly. I know first hand how PD affects one’s self, parents, spouses, children, friends, work as well as the financial burdens that arise.

My career involved extensive international travel running a large export business, global sourcing, marketing, distribution as well international marketing. During my 30 years of working with my organization I was also involved with paper machines, box plants, Kyoto protocol/climate change and ensuring compliance with the UN. Finally, I was part of the key management team involved financial resources, SPACS, and liquidating companies

I have been retired since I was 50 years old and find myself wanting to give more of myself to others as well as benefit from listening, sharing, and experiencing the joy that today and tomorrow holds for all of us.

Contact Paul:

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:

I have been diagnosed for about 5 years. I exercise a lot! I spend about 20 hours a week at the YMCA. Most all the staff at the Englewood Y know that I have Parkinson. I recently passed my Group Fitness Instructor certificate course, the Y has hired me as a part time Fitness instructor, I have been team teaching the Parkinson Exercise class in Englewood for almost a year. Often the staff will bring members with Parkinson to me so we can talk.

Contact Rick:

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:

I was diagnosed with Parkinson’s disease in 2012. I have many symptoms long before being diagnosed. I think I can provide information and support to someone who has Parkinson’s disease.

Contact Sharleen:

I was diagnosed nearly 16 years ago, and although I have had some physical decline, I maintain a generally optimistic outlook for the future. Early on, I made the decision to take the initiative to find out how to live my best life moving forward with this disease. As an athlete, I was happy to discover that exercise was key to slowing the progression of the disease. I also learned early in this journey that everyone’s experience with this disease is different, and that I shouldn’t “borrow trouble,” by assuming that symptoms other PD patients experienced would ultimately be my fate as well.

I have had not one, but two DBS surgeries, so I can speak of that experience first hand. Also, as a facilitator of the PD SELF program (a fantastic program that teaches self efficacy tools to newly diagnosed people with PD and their care partners) in Detroit for 5 years, I feel that my experience with that program would be helpful to those folks who are overwhelmed by a new diagnosis.

Although I have had to hang up my hockey skates, I can still golf reasonably well, and still enjoy a vigorous bike ride. My nature photography hobby which used to include walking great distances, lugging heavy cameras with huge lenses, has transitioned to short walks carrying a single lightweight camera and a built in zoom lens.

I am blessed to have my incredible wife Rose as my care partner, and tremendous support from my friends and family. I don’t know for sure what the future holds (but then again who does?), but my faith allows me to face that future peacefully.

Contact Steve:

I was diagnosed with PD in September, 2009, a month shy of my 43rd birthday. I have since run the gamut of available pharmaceuticals – carbidopa/levidopa, Azilect, agonists, etc. When the drug therapies were losing their effectiveness and after much discussion of our options with our neurologist, my wife and I ultimately decided on Deep Brain Stimulation (DBS) surgery. The surgery was completed in June, 2020 and we have no regrets. The results have been (pun intended) stimulating!

As the 5th of 6 children, I have always been very active physically, playing all kinds of ‘ball’ in the backyard as a kid with my siblings, neighbors, and friends. Since getting the COVID-19 (lbs that is!) and with the rigidity progressing from my PD, I find it much more difficult to stay active these days. However, I still believe that activity/exercise is a very important tool to delay the effects of PD.

Peronally, I have a wonderful wife of 35 years, Heather, two terrific children, Grace and Gabriel, and a dog named Bodie. I am a retired financial analyst in the automotive industry. I feel very honored, blessed, and grateful to MPF to be given the opportunity to share my experiences as a mentor and invite anyone who is struggling with the decision to DBS to reach out to me.

Contact Steve:

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:

I am 66 years old and have had Parkinson’s Disease for over 20 years although I was formally diagnosed in 2018. I have always been very active. Knowing now that exercise has been shown to slow the progression of Parkinson’s, I exercise almost daily. I enjoy any activity that involves the outdoors. Having Parkinson’s, I understand and experience the challenges faced everyday mentally and physically with the disease. I desire to continue to help people in any way to process and work with their diagnosis.

Contact Tamara:

But I’m only 43, I can’t  have Parkinson’s.”   That was my reaction when I was first told I likely had PD.  It took another year of doctors to confirm that diagnosis.

I spent several years wrestling, bargaining, and finally accepting that I had this progressive disease.  I had reached a crossroads of “now what?” Do I sit around feeling sorry for myself and let this disease consume me?  Or do I take charge of my future and live my life to the fullest for as long as I can.  Please read further to see how I came to terms with Parkinson’s Disease.

On a warm summer morning during one of my usual early Saturday morning rounds of golf at the Brookshire, I took an extra moment on the tee box, allowing all of my senses to take in the picture-perfect morning. Without warning, tears began streaming down my face.  Although I had been diagnosed with Parkinson’s six years earlier, it wasn’t until this perfect moment in time that I was overcome with the reality that I have an incurable progressive disease which will someday likely rob me of moments like this and take away my ability to play the game that I love so much.  This was the inspiration for the golf outing I host each year.

With help from my wife, Brenda, my daughter Madison, my Mom, my Dad, and many others along the way, our golf outing has grown into something far beyond anything I ever could have imagined.  It has given me something positive on which to focus my time and energy.  It has resulted in the formation of Making the Turn Against Parkinson’s and helped me find a voice I never knew I had.  It has granted me peace of mind knowing I have a connection to golf despite what the future may hold for me.  But most importantly, it has provided me the opportunity to make many new friends and meet a lifetime of interesting people I wouldn’t have otherwise.

To quote my own personal motto, “I cannot say being diagnosed with Parkinson’s has been a good thing.  But I can say, good things have happened to me because I have Parkinson’s.”

Whether meeting on the course or by phone, I hope I by sharing my experience with Young Onset Parkinson’s and Deep Brain Stimulation surgery, I can help you better understand your own Parkinson’s journey.

I have been a teacher all my professional life and as a past president of the Parkinson’s Association in San Diego I received lots of phone calls from newly diagnosed patients and was able to talk them through the shock of the new diagnosis and show them all of the resources that are available to them at our association.

Contact Wayne: