This month we asked our Members to share the "Things I wish I knew". Whether it's a doctor, a resource, or an experience you wish you had known about sooner - your stories help others in the community. 

Here are some of the responses: 

Seriously rethink your investment strategy. There is a 10% penalty for early withdrawal of IRA/401(k) funds unless you are disabled according to the federal government, which is a difficult standard to meet. You may be disabled enough to not be able to perform your usual and customary job, but that's not the standard. Even if you are disabled according to their standards, it can be a very slow process and you will need cash to bridge the gap. Like two years worth of living expenses. I wish I had stopped putting money in tax-deferred investment vehicles earlier and switched to money market accounts or high yield savings accounts or other short-term investments that would allow me to access my own money without penalty. Related: find a financial planner who is comfortable discussing disability and "early retirement". I have found that most are not equipped to deal with the curveball of YOPD. They keep wanting to treat me like a traditional client with a normal lifespan and a normal age of/path to retirement.

I wish I could have told my future self that I would figure out how to live fully with this disease even with so many unknowns about how I was going to progress.

Nothing. I knew there would be no financial, medical, legal, or legislative support. I was right.

Postponing an official diagnosis is tempting but not helpful because you can waste valuable time when you could have been implementing helpful strategies like additional exercise, supplements, and so on.

To get my finances right. Life insurance, Retirement, 401 plans, savings accounts etc. When you don’t expect to stop working at a young age you don’t think about these things as much. I wish I would have saved more and put more money into these types of accounts for mine ands my family’s future.

I wish I would have waited a bit longer to start medications and DBS. I feel as though I rushed into things hoping for a miracle.

I would have gone straight to a Parkinson’s Center of Excellence for my diagnosis and initial treatment, instead of my local health system. I eventually made it into the Center of Excellence and both the care and caring attitude of the team has been superb.

I wish I had known about the overlap between menopause symptoms and YOPD and I wish the physical therapist treating me for frozen shoulder (common early menopause and common early PD symptom) had recognized the lingering weakness and stiffness in my arm was being caused by PD - I could have caught my diagnosis nearly a year earlier.

I wish I had prioritized my physical health more, even before my PD diagnosis. As a working mom, it was easy to justify the needs of others (family/job) before my own. Nothing like a PD diagnosis to force a reframing of priorities and committing to putting my health first to make sure I'm as healthy as possible for myself and my family!

There are so many things I wish I had known earlier. I think what would help me the most would be the assurance that I can still live a great life with this disease.

Early on, I was afraid of the answers, so I didn't ask the questions. I didn't pursue a diagnosis as vigilantly as I could have, trying to keep my head in the sand for as long as possible. I knew I was sick and getting worse as the years passed. Other health problems arose and I became completely incapacitated before I turned 40 years old. I made much of my early adult life sicker than I needed to be, going undiagnosed and unmedicated for 20 years.

During my diagnosis process, I was convinced life was over. No career, no college, no driving, no social life, no goals. I was certain I was doomed to a slow slide into a dark and meaningless existence.

What I know now is that this disease has revealed my most authentic self. I live as truthfully as I can, I speak from the heart and have no guilt over taking care of myself first. Some of what I thought was over was accurate, but what has taken their place is unpredictabily rewarding and incredible. 

Wish I had known what a movement disorders specialist was as opposed to a basic neurologist. I was given a dopamine agonist for my early tremors and had a very bad reaction. I proved to be very sensitive to medications. Finally found the right Neurologist / movement disorders specialist who prescribed an altogether different medication with very slow incremental increase that worked.

Yes, I wish I had known more about different doctors. Several we tried were not that good despite having been trained at prestigious hospitals etc.

I wish it had been possible to have a team of specialists coming together to work with my son. In Arizona for example, at the Mohammed Ali Center that is how things are done. (I know about that from webinars (ZOOM sessions) with PMDAlliance which is headquartered there. I spent a huge amount of time trying to keep my son's doctors and specialists informed. For example, when my son was hospitalized, his PCP did not even come there to see him. I found only 1 movement disorders specialist who actually saw patients in the hospital. I was able to get him to agree to take him as outpatient which worked really well until the doctor retired.

My journey to diagnosis took 14 years.  I was told by multiple neurologists to go away.  How could a young man who played basketball and soccer have a progressive neurodegenerative disease?  The doctors were baffled, but deep down I knew something was not right.  In 2022,  I had enough and finally whatever was happening to me needed care.  I took a DatScan and was told on the patient portal while I was teaching that I had Parkinson's disease.  Finally, I had an answer and thankfully medicines that worked.  I wish I knew how much a person with PD can improve with proper medical care.  I went being constantly off balance and weak to coming in 8th in a 5k race.  That's 8 out of 500 runners.  I could grab the ten foot rim while playing basketball.  I could skateboard again.  Sounds remarkable, right?  I wish I knew that when I read the message in the patient portal and the world felt like it was conspiring against me. 

I wish I had started carbidopa levodopa on day one. My main issues are tremor in my right hand, and bradykinesia and some akinesia in my right hand, and a bit in the arm.

I started CL around three weeks ago. This is after about thirteen months after my diagnosis. I waited partially because I didn't fully mentally debunk the myth that starting CL early causes dyskinesia earlier, even though they say that's officially debunked. I was also overly afraid of "immediate" side effects. I haven't had any side effects after taking the CL. I also haven't had any benefits, and I realize that finding the right medication is a process.

After that lack of response, I realized that there's no point in waiting because there's no guarantee the dose and medication you're first prescribed will work. Something will almost certainly work! Don't get me wrong. But it may take time, so you're better off starting right away.

Also, if you do end up having side effects, it's better to know that straight away, so that you and your doc can try to figure it out. The way I did it, I waited on taking CL until my bradykinesia made my typing quite hard, and my hand started going into a tremor when I do certain tasks, and I started having some more tremor frequency throughout the day (versus day one of my diagnosis).

I assumed when I started taking CL that the bradykinesia would go away, and maybe the tremors. But neither has yet, so now this is sort of "lost time" with slightly more advanced symptoms that are having a mild, yet annoying effect on my quality of life. Whereas if I'd started CL 13 months ago, I probably would have at least the bradykinesia more under control, and maybe the tremors too.

The worst part is that I did all of this knowing that not everyone has an immediate response to CL. So I even ignored the wisdom and advice of the PD community, in favour of my flimsy excuses. So definitely don't do that.

Good luck!

We would like to hear from you (and your care partner) and learn your perceptions about treatment options for Parkinson's Disease. 

For this study we will ask  you to complete a quick online survey & an online interview. STUDY LINK.

For more information about this study please email pd-study@kieloresearch.com.

April is Parkinson's Awareness Month, and we want to shine a light on the power of shared experiences within our YOPN community. This month, we’re asking: "What would you share about your experience with YOPN with others living with YOPD?"

Your journey, your insights, and your stories have the potential to help someone else feel more supported, informed, and connected. Whether it’s advice, resources, or moments of encouragement, we want to hear it all. Share here

• What aspects of YOPN have made the biggest impact on your journey? 
• Is there a resource, group, or connection through YOPN that’s been invaluable to you? 
• Have you made a connection or new friend through YOPN? 
• Have you gained knowledge or support you wish you had earlier in your diagnosis? 
• Is there a piece of advice or a perspective you’d share with someone newly diagnosed?

Your responses will help us highlight the strength of this community and provide guidance and hope to others navigating their own YOPD journey. We’ll feature your anonymous insights in blog articles, social media posts, and our monthly member update throughout Parkinson's Awareness Month.

Let’s use this month to lift each other up and spread awareness — your voice matters.  Share with this Form.

Part 2: Dealing with the Diagnosis 

Some moments in life stick with you forever, etched into your memory like they just happened yesterday. Realizing you have a chronic, progressive neurological disease is one of them. It was a quiet Sunday morning in October. My husband and I had just woken up and were reading on our iPads. In my in-box was a message with the results of the DaTscan taken 36 hours earlier. “Should I open it now?” I asked. “Sure,” came the reply next to me. The words at the bottom of the report read, “consistent with Parkinson’s disease,” and shocked what little grogginess remained in us. Tears flowed. Arms hugged. Promises were made. 

The next morning, I called the neurologist. The conversation on the other end of the line went something like this: 

I see your results here but I’m just not sure. I want you to see a Movement Disorder Specialist as soon as possible … that’s a neurologist who specializes in Parkinson’s … and, hey you’re really lucky because Georgetown Medstar is practically in your backyard and they are the best, and also, I already called in this drug for you that I want you to start taking today. It’s called Carbidopa-Levodopa, it’s the gold standard, you’ll take it three times a day, and you’ll know for sure if you have Parkinson’s in two or three days because if your symptoms improve, then you have Parkinson’s, and if they don’t improve then you don’t have it.

My head was spinning after that word salad and I asked very carefully with intentional emphasis, “I need to know: Do. You. Think. I. Have. Parkinson’s?” I’ll never forget her audible sigh followed by a defeated-sounding, “Yes.” I could feel her sadness in that sigh. She was a sleep disorder neurologist and PD was not her specialty. 

About 6 weeks later, we met with the MDS at Georgetown Medstar and he confirmed that I had Young Onset Parkinson’s Disease.

Thus began what I humorously now refer to as my 10-month long “pity party.” I’m not trying to be flippant here. It’s a terrible diagnosis and I needed this time to grieve for the future I thought my husband and I would have together. There’s no doubt that it has been altered greatly. But it’s not a place to linger long. You need to get to the other side of it. 

From the get-go, he and I would tell each other, “At least it’s not a brain tumor, or MS, or ALS, or (fill in the blank with your terrible disease of choice).” I tried to stay strong and keep a brave face, but let me tell you, it was a really dark time. I found myself in tears often, especially when I had the house to myself.

Early on, I remember many hushed FaceTime conversations with some of my close friends conducted in our bedroom closet. It was the only place in the house where I knew I couldn’t be overheard by our kids.

Telling our twin daughters went better than expected, probably because my husband didn’t give me time to fret about it (he knows me so well!). We were all together one day and he looked at me and said, “We might as well tell them now,” giving me no choice but to tell them. They were just 22 years old, but they handled it with compassion and maturity. 

Here’s where I hit my turning point and how I left the pity party behind. I had a checkup with my MDS, and I told him I was really worried. He said, “Oh, about Covid?” (we were still in the pandemic at the time). “No!” I replied, “Parkinson’s!” He basically brushed me off and said something like, “Everybody has something. Just take it one day at a time.” To say I felt like my emotions were being dismissed is an understatement. 

After my appointment, I met up with Anna Grill, the founder of YOPN. She had graciously invited me to meet her for lunch at a nearby restaurant. She was the first person I’d ever met with YOPD and she was so sweet and kind. We shared our PD stories and I remember asking her a ton of questions. At some point during lunch, I told her about my frustrating conversation with my MDS earlier that morning. I just knew she would be as indignant as I was. Her two-word reply shocked me to my core. “He’s right,” she said quietly. She advised me to leave my pity party behind and start living. Boy, was that a message I desperately needed to hear from someone who actually had the same diagnosis. She was right. 

I always knew that I had so much going for me, but it was time to truly appreciate it! I have a loving family, strong faith, wonderful friends, and good health insurance. I am going to be fine. Even when I’m not fine (and there are days when I am far from it), I will be fine.

My favorite song lyrics from The Barenaked Ladies tune, “Lovers in a Dangerous Time,” is now my motto: “Nothing worth having comes without some kind of fight. Gotta kick at the darkness 'til it bleeds daylight.”

Kick at the darkness, my friends. Never stop kicking at it.

Author’s Note: If you are having thoughts of suicide or self-harm, please reach out for help today. Whether it's a trusted friend, family member, or a mental health professional, don't hesitate to lean on someone for support. You can also contact a suicide prevention hotline—they're there to help you through this. In the US, you can dial 988 anytime to speak with someone. You are not alone, and you are loved. 

Part 1: The Road to Diagnosis (published in July 2024 issue of The YOPN Times)

My Parkinson’s journey started, as it often does, with a curiously twitchy finger. My immediate reaction, however, is embarrassing to admit: I held my right hand up to my husband and said quite glibly, “Look, Honey, I’ve got Parkinson’s!”

Seriously, I said that! I both cringe and chuckle when I think back on that moment. Karma is, as they say, a … well, we all know what they say about Karma!

Of course, I didn’t think I had Parkinson’s. That would be crazy! I was a healthy 47-year-old, the vice president of a small publishing firm, happily married with twin girls about to start college. Life was busy and exciting! Parkinson’s doesn’t happen to women my age – the twitchy finger was clearly stress-related.

Over the next few years, many seemingly unrelated issues started happening to my body, and I had an excuse for just about all of them: slowing down (well, I’m not getting any younger), stiffness in my right arm and shoulder (it’s all this computer work), tiny handwriting (it’s because I don’t write very often. It’s a lost art, you know.), insomnia and GI issues (happens to everyone!). The list goes on.

But there were other issues that I couldn’t ignore. The worst was that the toes on my right foot would curl painfully when I walked. I tried everything: multiple trips to my Orthopedic doctor who was completely stumped, stretching, and many rounds of physical therapy, but nothing gave me relief. Of course, I would much later learn that this is called Dystonia and is very common in Young Onset PD.

When I kept making typos at work, I went to my primary care doctor and complained that my right hand felt like it couldn’t keep up with my left, resulting in constant frustrating typos. It was so bad that I started using voice-to-text assistive technology to compose emails. I remember holding up my hands to my doctor and wiggling my fingers fast on my left hand and then showing him the same movement on my right hand, which was at about half the speed and much less graceful. He thought I had a pinched nerve and wrote down the name of a neurologist. Unfortunately, I never mentioned to him the occasional slight tremor or the toe cramps because I didn’t realize they were related. Lesson learned there!

And did I visit that neurologist? Of course not! I figured if it was a pinched nerve it would work itself out eventually and I didn’t want to open another medical “can of worms” when I was dealing with the toe cramps.

But then came the day I’ll never forget, a gorgeous sunny September day in 2020. My husband was sitting on our front porch when I came outside to put a letter in the mailbox at the end of our driveway. As I walked back up the front porch, he was looking at me strangely and said, “Your right arm isn’t swinging when you walk. Your left arm is swinging normally but your right one is just hanging there like it’s dead. What's going on?”

I told him I had no idea what he was talking about, laughed a little bit, and went back inside to work.

Five minutes later, my husband walked into my office, iPad in hand, and said in a serious but soft tone, “I hate to say this but I think you have Parkinson’s. You need to see a neurologist.” I’ll admit, I was more annoyed than concerned. “Oh come on! Are we really doing this?” I asked him. But as I looked at the list of symptoms on his iPad, my face dropped as I realized that I had so many of them.

The next morning I called the same neurologist that my GP recommended I see a few years earlier. She ordered testing including a DaTscan. A few days later, on a Sunday morning, I opened an email from the imaging center with the results of my scan that they had conducted 36 hours prior. Most of it was undecipherable without proper training except the last part that said, “consistent with Parkinson’s disease.”

Our world was rocked.

When my husband was diagnosed with Parkinson’s five years ago, we felt lost. There was so much we didn’t know, and the advice we received from doctors was minimal. We mostly heard about medications and basic symptom management. Over time, though, we realized that managing Parkinson’s requires a more holistic, tailored approach, something we wish we had understood from the start. Here's what I wish we’d known when we first began this journey.

Exercise is Crucial — Start Early

If there’s one thing I would emphasize most, it’s the importance of physical exercise. Early on, we didn’t fully grasp how essential exercise is in managing Parkinson’s. We thought focusing solely on medication would be enough, but regular physical activity has proven to be one of the most effective ways to manage symptoms and improve quality of life.

My husband now follows a daily routine that includes stretching, strength exercises, and walking. These exercises help reduce rigidity, improve balance, and lift his mood. We didn’t start incorporating these exercises until later, but I now know how beneficial it would have been if we had made exercise a priority from day one. 

Better Medication Management and Diet Go Hand-in-Hand

When my husband was first diagnosed, we focused on taking his prescribed medications but didn’t pay enough attention to how his diet could impact their effectiveness. We later learned that protein can interfere with the absorption of Parkinson’s medications, something we hadn’t been told by the doctor. We’ve since developed a meal plan that avoids protein during medication windows, focusing on lighter, easily digestible meals at those times (mainly vegan). This adjustment has made a noticeable difference in how well his medication works. Beyond that, we also started focusing on a nutrient-rich diet to support his overall health, ensuring he gets plenty of antioxidants and anti-inflammatory foods like leafy greens, berries, and fish and avoids dairy, gluten, ultra-processed food, red meat and alcohol. Regular blood tests have helped us identify any deficiencies that could impact his Parkinson’s symptoms, and we’ve adjusted his diet accordingly.

Holistic Approaches to Treatment Matter

We also wish we had explored alternative therapies earlier. Over time, we’ve learned that Parkinson’s treatment isn’t just about medication — it’s about supporting the body and mind in all ways. Practices like acupuncture, qigong, and autogenics have helped manage symptoms like stress and rigidity. We also explored supplements, but it’s important to approach these cautiously, working with professionals to ensure they don’t interfere with conventional treatments.

Mental Health is Just as Important

Parkinson’s is not just a physical disease; its emotional and mental toll can be just as significant. For my husband, the loss of his mother at a young age created a lot of unresolved grief and emotional trauma, which contributed to stress and worsened his symptoms. I wish we had recognized earlier that mental health plays a critical role in Parkinson’s management.

We’ve since incorporated meditation and mindfulness practices into his daily routine to help manage stress and improve emotional well-being. Therapy has also played a role in addressing past trauma, and it’s become clear that managing mental health is just as essential as managing physical symptoms.

Work with a Team — Not Just One Doctor

When my husband was first diagnosed, we primarily relied on our neurologist to guide us through treatment. While they are a key part of the care team, we’ve since learned how important it is to work with a broader range of specialists. A naturopath has helped explore natural remedies that complement medical treatments, and a dietitian has been invaluable in creating a nutrition plan tailored to his needs.

Routine is Vital

Along with exercise, having a set daily routine has been crucial in managing Parkinson’s. Parkinson’s can make it difficult to maintain structure, but we found that consistency in daily activities helped improve both physical and mental health. My husband’s routine includes time for exercise, medication, rest, and meals — all planned to help manage symptoms and keep him on track.

Get Rid of Chemicals in Your Life

We didn’t realize how much environmental factors could play a role in Parkinson’s. Over time, we’ve been eliminating harmful chemicals from our homes and daily routines. This includes switching to natural cleaning products, eliminating unnecessary plastics, and reducing exposure to chemicals in food and skincare. While it’s impossible to avoid everything, we’ve found that creating a cleaner environment has helped my husband feel better.

The Power of Social Support and Connection

The emotional toll of Parkinson’s disease is real, and it’s something we didn’t fully appreciate in the beginning. It’s easy to get caught up in the medical side of things and forget how isolating it can be. We didn’t know the importance of surrounding ourselves with a support network of family, friends, and fellow Parkinson’s warriors who truly understand the journey.

I’ve learned that the connections we’ve made — especially through support groups and online communities — have been invaluable. They’ve helped us learn new tips, share our experiences, and remind us that we’re not alone. This connection also brings hope and inspiration when things get tough. If I could go back, I would tell myself not to wait so long to seek out these support networks. There’s a whole community out there that can make the road easier to walk.

If I could go back and give myself advice when my husband was first diagnosed with Parkinson’s, I’d tell myself to take a more holistic, personalized approach. The conventional path is important, but it’s not enough on its own. Combining exercise, a tailored diet, medication management, alternative therapies, and mental health care has made a world of difference in how we manage Parkinson’s today. Parkinson’s is not just a physical disease; it requires addressing the person as a whole. By taking this approach, we’ve learned to live a better quality of life despite the challenges.

Parkinson’s management is an ongoing learning process. The key is to never stop researching, experimenting (safely), and building the right support system. We still don’t have all the answers, but we’ve learned that Parkinson’s is a journey best taken one step at a time, with the right tools and mindset.

What I wish I would have known before I was diagnosed...

First, I wish I would have known sooner. I wish someone could have explained what was happening to my body and my mind. Some clear clues to shed light on the unexplainable. A link to make my words and odd reactions make sense. I wish I would have understood a lot of things. I wish…

I wish the world was a different place. I wish I didn’t have this ailment that affects my face. 

The loss of face. The four words that start the term most professionals use for a loss of facial expression or facial masking. 

Yet the ‘loss of face’ is also seen in some cultures as a falling from grace. Signaling shame. It’s interesting how the same words can have different meanings depending on who is using them. I wish I’d known how different kinds of trauma affects a person as a whole. Not just people with PD. EVERYBODY! I wish…

Parkinson's disease is the fastest growing neurological disease on the planet. The reasons feeding into that hard to swallow fact are endless. This is no joke. I also wish I had known the facts about toxic chemical exposure. Like many of us I spent years failing to hide my symptoms. Or cover them in blanket terms like ‘I’m just a clutz’ or ‘two left feet’. Dangerous tales that included jokes that go back to my childhood. My dad often said I tripped over cracks in the sidewalk. In a place where the ground moves as much as California. In truth, I often did. 

Early childhood balance issues. Repeated adolescent head trauma. Young adult lymes disease. Persistent social isolation as an adult. I wish I had known how all of these things contributed to years of undiagnosed confusion. I wish…

Yes, and I wish I would have known much MUCH earlier how a diet, specifically a gluten free diet, and exercise could ultimately set me free. Not from PD. Because we haven’t yet found the secret combination to do that. Finding the right diet is how PD helped me find a road towards a healthier me. Still. I wish…

I wish the cure was here today. Or perhaps yesterday. Those long years so many of us had no choice but dismay. Crying to doctors, family and peers asking. ‘Please isn’t there another way? 

Hope is on the horizon. Ending Parkinson’s disease 2 is on its way. With it more action to take. I hope it will inspire more to stand up and say. We the people with PD demand to have our say. 

I wish I knew so much sooner that it was true. Yes, and I share my stories to help find a cure that is new. In that book there is a lot of truth to be told. Our stories are important. To make change we must stand up and be bold. 

Time passes slower for the lonely soul. When loneliness happens, It can be just as profound in a crowded room as it is when one is truly by themselves. Most people don’t understand. For those of us battling Parkinson’s disease, the loneliness some of us feel in crowds is all too real. 

Frustration caused by movement and communication issues, struggling to make sense and stay upright is harder than it looks. While our facial expressions change, it adds to the confusion. We try to explain but the struggle to be understood just adds to the anguish many of us feel. True communication breakdown. Causing stress, loss of time, and loss of will until apathy creeps in. Then caring and the patience to keep trying to make others understand flies out the window. 

Loneliness is mentally crushing and debilitating. It leaves you waiting, wondering and worried about everything. About the present and the future. Being misunderstood by family and friends is the worst form of feeling lonely. This is where healthcare professionals have to play a better role in explaining to family members about the psychosocial side of Parkinson’s. Not just leave it up to the person diagnosed to figure it out as they go along. 

When they first added carbo/levo to my already full pill regime the neurologist explained I might see a fluctuation in my moods. My mom was still alive at the time and I remember talking to her about it when I felt things begin to shift. I was thrilled I found a medication that was addressing my movement disorder and speech issues. I took the bad with the good. Figuring that at some point it would balance out. 

Only I was wrong. It helped many things and removing unnecessary medications improved my overall health. My quality of life deteriorated due to the sheer misunderstanding of how PD looks different for everyone. Especially for women who are also going through the perimenopause phase of life. 

I’ve never really been a stranger to loneliness. Living in rural areas for most of my adult life didn’t help. Depression and anxiety were the norm for me when our family of three became a family of 4. Some of my issues with balance, facial abnormalities including drooling, and left side symptoms go back as far as my early 20’s. Speech abnormalities go back to early childhood. Causing awkward social anxiety from birth. 

A week after I suffered a cracked rib during a mammogram in 2010, I was reduced from a young mother to an old woman walking with a cane overnight. It was a whole new kind of loneliness. One they called everything from fibromyalgia, possible stroke to a slight case of gamberaia. My world was forever rocked off its axis. My small family and school-aged children weren’t prepared. We did the best we could. What little independence I had disappeared. The loneliness in my head became more profound, amplified by shame and grief over the basic life skills I had to give up. 

2016 found us in a different state with a different diagnosis. Young-onset Parkinson’s disease. Left up to me to figure out and explain to my family who were busy growing up and moving away. Again, I was happy I found a pill that worked. Only my family couldn't and wouldn’t accept what that one pill meant. They couldn’t get the progressing images on Michael J. Fox out of their heads. Refusing to believe that while I was losing weight and improving my health, I could have any form of Parkinson’s Disease. 

As anyone who has taken this medicine for a long period of time knows. It wears on your mentality. I did what I could through research. I read about Pamila Quinn and Jimmy Choi and followed the advice of Micheal Okun while I changed my diet and tried to ‘cure’ my PD on my own. Talk about a lonely road. 

Yes, and every attempt I made to include my family in my research and show how I was improving because of everything I learned. The more they pulled away. 

My loneliness grew. The one local support group I tried was a trainwreck. While my symptoms progressed to the point where I wasn’t sleeping well. I spent many nights having imaginary conversations in my mind with doctors I couldn’t afford to see. Specialist who might be able to help me explain what I was going through. Taking notes for a book no one wanted me to write. 

Shame, blame, guilt, denial and crippling loneliness were mine. Yes, and they still are. Only thanks to my growing network within the PD community. While I still feel a great deal of loneliness. I know I am not alone. 

 Yes, and while the book I’ve spent several years trying to write is still in limbo. Mine and many others like me are at last making a difference. No one deserves to navigate their PD journey alone. We all have the right to tell our story, and we need to now more than ever. All I’ve ever wanted is to love my family and make a difference in this world. Now I can. One, brutally honest story at a time.

Loneliness

According to Webster, loneliness is “being without company, being off from others, not frequented by human beings, sad from being alone and producing a feeling of bleakness or desolation—a feeling no one ever wants” especially when battling Parkinson’s Disease. 

Loneliness affects those diagnosed, care partners, caregivers, families, and the community. It has long-term effects, and some, through heartbreak, can face additional medical, emotional, and even psychological illnesses.

Combatting loneliness can be achieved through support. Family support helped me through my caregiving journey with my mother, who passed at age 69 due to PD. Many may not have family support, so they turn to the community. Support groups are helpful, but I was not even aware of them when my mother was struggling with PD. Awareness brings another obstacle, as even today, we spend countless hours advocating for PD awareness through books, blogs, and social media; I spend 24/7 trying to teach those who are unaware.

I still feel lonely many days as I miss my mother. If we had a cure, she would still be by my side, laughing, loving life, and spending time with her grandkids. I had a special relationship with my mother, who will always be my best friend. We shared the good times, and she supported me during the tough times. When she struggled through her PD battle, I often felt alone because I did not have community support and was not aware of foundations and organizations out there since I spent all my time caring for my mother and trying to find ways to help combat and slow the progression of the disease. 

We lost the fight on January 1, 2020, and since I have lost a part of myself forever. The main reason I still advocate despite being too late for my mother and our family is I never want anyone to feel alone as I did as a caregiver and my other did as a person with Parkinson’s, shockingly she never even met someone else with PD so she felt she was alone, frightened and did not have the community support that today I know does exist, I often wonder if the many inspiring and unique people who are battling PD or advocates I consider family today would have just held a FaceTime call with us during the time my mother battled Pd as it would not have changed the outcome. Still, it would have brought a few smiles and likely put us all at ease that others are also going through similar but not identical experiences but the care turn. Love would have changed all our lives for the better.

There are support groups; try one virtually or live; if it doesn’t fit your needs, then try another one. Attend a walk, listen to a podcast, join social media groups and pages that are like ours, continue to try to bring smiles, hope, and achievable goals, 

Never sit back and wait for others to come to you; our problem was time but knowing what I do today and seeing significant progress through research, more information is attainable and available; a decade ago, we did not know diet and exercise may slow the progression of PD down. These areas can change lives for the better, and even through exercise groups, walks, conventions, and meeting others in the community can impact an individual and their families. A significant positive way of bringing effective results and outcomes, 

Although we cannot lock back, we can look forward, and I will never stop advocating for a PD cure in my mother, Sharon’s memory because today I combat my loneliness thanks to the millions throughout this beautiful community and around the world.

You are never alone. I will continue to fight right by your side until the cure is at all our doorsteps globally,  Reference: Merriam Webster Dictionary (2024) Loneliness

Living with Parkinson’s is about much more than managing tremors or medication schedules. It affects every part of life, including relationships, social connections, and intimacy. While these topics may not always come up in doctor’s offices, research shows they are crucial for mental and physical well-being. 

The Science of Social Connection: Why Relationships Matter

Humans are wired for connection. Studies consistently show that strong social support improves health outcomes in chronic conditions, including Parkinson’s. Social engagement can influence both motor and non-motor symptoms, helping people maintain a better quality of life.

A 2021 study published in Neurology found that people with Parkinson’s who had strong social support experienced:

• Slower disease progression
• Better mental health outcomes
• Higher quality of life

Another study published in NPJ Parkinson’s Disease (2022) found that social engagement is linked to better cognitive function and mobility. Researchers observed that people with PD who regularly participated in social activities had a 40% lower risk of cognitive decline over five years (Cochrane et al., 2022).

However, Parkinson’s presents challenges that can make maintaining relationships difficult. Symptoms like fatigue, speech difficulties, and motor impairments may create barriers to socializing. Anxiety and depression, both common in PD, further contribute to feelings of isolation.

For those looking to build connections within the Parkinson’s community, the PD Buddy app offers a great way to find and connect with others who share similar interests. Through the app, people can join chat groups, find nearby individuals with Parkinson’s, and discover local events and activities to attend together. One of the key benefits of digital tools like PD Buddy is that they allow people to make these connections on their own time and at their own pace, providing the comfort and flexibility to engage when they feel ready. Whether it’s making new friends, sharing experiences, or simply finding a walking or exercise partner, PD Buddy makes socialising easier and more accessible. Staying engaged in social activities can make a significant difference in emotional well-being, reducing feelings of loneliness and isolation.

Loneliness & Parkinson’s: A Real but Solvable Problem

Loneliness is more than just an emotional burden—it has real, physical consequences. A 2023 study in The Lancet Healthy Longevity found that social isolation was linked to faster cognitive decline and increased motor difficulties in people with Parkinson’s (Chen et al., 2023).

People with Parkinson’s are at a higher risk of loneliness for several reasons:

• Reduced mobility may limit participation in social activities.
• Speech changes can make conversations challenging.
• Depression and anxiety can make reaching out to others feel overwhelming.

How to Stay Socially Connected

✔ Be honest about your needs. If friends and family don’t understand what you’re going through, educating them can help them provide better support. ✔ Join a Parkinson’s support group. Whether online or in-person, connecting with people who understand your journey can be a game-changer. (Check out Parkinson’s UK, Davis Phinney Foundation, and Michael J. Fox Foundation, PD Buddy app for support groups.) ✔ Try new social settings. If large gatherings feel overwhelming, smaller meetups or virtual groups may be more comfortable.

Sex, Intimacy & Parkinson’s: The Elephant in the Room

Parkinson’s can affect intimacy, but that doesn’t mean love and passion disappear. In fact, research suggests that maintaining intimacy can boost mental health and even improve symptom management.

A 2022 study in The Journal of Parkinson’s Disease found that sexual activity was associated with improved mood, better sleep and enhanced motor function (Fabbri et al., 2022)

Common Sexuality-Related Challenges in Parkinson’s

1. Changes in Libido: Parkinson’s affects dopamine levels, which can alter sex drive. Some people experience reduced libido, while others (especially those on dopamine agonists) may experience an increase. 2. Physical Barriers: Stiffness, tremors, and fatigue can make intimacy physically challenging. Adapting positions, pacing intimacy, and using assistive supports can help. 3. Emotional Barriers: Anxiety, depression, or body image concerns can make intimacy difficult. Open communication with a partner is essential to maintaining closeness.

Pro tip: The 2022 study also found that couples who communicated openly about changes in intimacy reported higher relationship satisfaction.

Resource: Love, Sex, and Parkinson’s Podcast by Davis Phinney Foundation

Love & Parkinson’s: It’s a Team Effort

Whether in a long-term relationship, dating, or re-entering the world of romance post-diagnosis, Parkinson’s doesn’t mean the end of love. It simply means adapting.

❤️ For couples: Approach Parkinson’s as a team. Instead of seeing it as your disease or their disease, treat it as a shared challenge. For those dating: Be upfront about your diagnosis when you feel comfortable. Let potential partners see you first, not just Parkinson’s. For everyone: Prioritize emotional intimacy. Holding hands, hugging, and spending quality time together can be just as powerful as physical intimacy.

Final Thoughts: You’re Not Alone

Parkinson’s presents unique challenges, but relationships—whether friendships, family bonds, or romantic connections—are still very much possible. If you’re struggling with loneliness or intimacy, know that you’re not alone.

At the end of the day, Parkinson’s is part of your life, but it doesn’t define your ability to love and be loved. ❤️

Additional Resources:

• Michael J. Fox Foundation: Social & Emotional Support
• Davis Phinney Foundation: Intimacy & Parkinson's
• Parkinson's UK: Relationships & Communication
• PD Buddy app available on Apple and Play stores, free for people with PD and caregivers