A Day In My Life

Today’s a new day!

There are days when I wake up and have to remind myself that my body is not the same body I had years ago.

For most people, waking up is simply the beginning of another day. For me, waking up can feel like the beginning of another battle.

I live with Parkinson’s, Myasthenia Gravis, Gastroparesis and Dementia. Each condition brings its own challenges, and sometimes they seem to take turns—or work together—to remind me that this journey is anything but easy.

But there is something else I wake up with every morning:

Hope.

Morning Comes With Questions

Before my feet even hit the floor, I often have to figure out what kind of day my body is going to allow me to have.

Will my muscles cooperate today?

Will the Parkinson’s symptoms be manageable?

Will my mind be clear, or will dementia make the morning confusing?

Will my stomach tolerate food?

Will fatigue consume the energy I need just to get through the day?

These aren’t questions most people have to ask themselves when they wake up.

For me, they are part of everyday life.

Sometimes getting dressed takes longer than it should. Sometimes walking across a room requires concentration. Sometimes my body simply doesn’t want to cooperate with what my mind is telling it to do.

And yet, I get up.

Because I’m still here.

Even Breakfast Can Be a Battle

Gastroparesis has changed my relationship with food.

Something as simple as eating breakfast isn’t always simple. My stomach doesn’t always cooperate, and there are days when eating can leave me feeling miserable.

There are times when I wish I could just sit down and enjoy a normal meal without thinking about what it might do to my body afterward.

But I’ve learned that living with chronic illness means learning to adapt.

You make adjustments.

You listen to your body.

You celebrate the small victories.

Sometimes simply being able to eat something and keep it down is a victory.

Then There Is Fatigue

Myasthenia Gravis brings another level of unpredictability.

Fatigue isn’t always the kind of tiredness that a good night’s sleep fixes.

It can feel like my muscles have simply run out of strength.

Things that look incredibly easy from the outside can require tremendous effort on the inside.

Walking.

Standing.

Getting dressed.

Taking a shower.

Going through a normal day.

People may see me doing something and think, “That doesn’t look difficult.”

What they can’t see is the energy it may have taken for me to do it.

That’s one of the hardest things about invisible illness.

People see what you accomplish.

They don’t always see what it cost you.

Then There Is Dementia

Perhaps one of the most frightening parts of this journey is not always knowing whether my mind is going to cooperate.

There are moments when memories become difficult to retrieve.

There are moments of confusion.

There are moments when I know something should be familiar, but my mind doesn’t immediately connect the dots.

And that can be frightening.

There is a unique kind of frustration that comes when your mind doesn’t work the way you know it once did.

You know the information is somewhere inside you, but you can’t always reach it.

I’ve had to learn to be patient with myself.

I’ve had to learn that forgetting something doesn’t make me less valuable.

Confusion doesn’t make me less of a person.

And needing help doesn’t make me weak.

Some Days Are Better Than Others

That’s probably one of the biggest lessons chronic illness has taught me.

No two days are exactly alike.

Some days I accomplish more than I expected.

Other days, simply getting through the day is the accomplishment.

And I’ve learned not to measure the value of my life by how much I accomplish.

My worth isn’t determined by how productive I am.

My worth isn’t determined by how fast I walk.

My worth isn’t determined by how clearly I speak.

My worth isn’t determined by what my diseases have taken from me.

My worth comes from God.

And that changes everything.

I Still Have Things To Do

One of the greatest mistakes we can make when facing a long-term health battle is believing that our lives are over.

They’re not.

They may look different.

The dreams may have to change.

The pace may have to change.

The plans may have to change.

But our purpose doesn’t disappear simply because our bodies change.

I may not be able to do everything I once did.

But I can still encourage someone.

I can still love my family.

I can still pray.

I can still write.

I can still share my story.

I can still remind someone else that they aren’t alone.

And maybe that’s part of my purpose.

Maybe the scars from this journey aren’t just reminders of what I’ve survived.

Maybe they’re opportunities to help someone else survive their own battle.

Some Days I Get Tired

I’m not going to pretend otherwise.

There are days when I’m tired of being tired.

There are days when I wish I could have just one completely normal day.

One day without thinking about symptoms.

One day without wondering what my body is going to do.

One day without having to calculate how much energy something will require.

One day without my mind playing tricks on me.

But even on those days, I remind myself:

I’m still here.

And as long as I’m here, there is still purpose.

My Life Isn’t Defined By My Diseases

Parkinson’s is something I live with.

Myasthenia Gravis is something I live with.

Gastroparesis is something I live with.

Dementia is something I live with.

But none of those things gets to define who I am.

I am more than my medical chart.

I am more than my symptoms.

I am more than my limitations.

I am more than the difficult days.

I am a husband.

I am a friend.

I am a child of God.

I am an overcomer.

And I am still walking this journey one day at a time.

If You’re Walking A Similar Journey

If you’re reading this while living with Parkinson’s, Myasthenia Gravis, Gastroparesis, Dementia, or another chronic illness, I want you to know something:

You are not your diagnosis.

Don’t be ashamed of needing help.

Don’t feel guilty for resting.

Don’t compare your journey to someone else’s.

Don’t beat yourself up because today wasn’t as productive as yesterday.

Give yourself grace.

Celebrate the little victories.

And when all you can do today is get out of bed and make it through the day, remember that sometimes surviving the day is a victory worth celebrating.

And For Me, There Is Still Hope

My faith doesn’t mean I pretend this journey is easy.

It means I don’t have to walk through it alone.

There are days when I don’t understand why God has allowed this journey to be so long.

There are days when I am exhausted.

There are days when I have questions.

But I continue to hold onto God’s promises.

I continue to believe that my life has purpose.

I continue to believe that my story can encourage someone else.

And I continue to wake up every morning and say:

“God, I’m still here. Use me.”

That’s what a day in my life looks like.

It’s messy.

It’s unpredictable.

It’s exhausting.

Sometimes it’s painful.

Sometimes it’s confusing.

But it is also filled with moments of grace, love, laughter, faith and hope.

And tomorrow morning, when I wake up, I will do it all over again.

Not because this journey is easy.

But because I’m still here.

And as long as God gives me another day, I intend to live it with purpose.

I may have Parkinson’s.
I may have Myasthenia Gravis.
I may have Gastroparesis.
I may have Dementia.
But I am not defeated.

I am still walking.

I am still fighting.

I am still believing.

I am still hoping.

I am still an Overcomer. ~OC

Through A Different Lens

Today’s a new day!

Another night of very little sleep, so I found myself awake rewatching the amazing documentary Photography No. 24: Ken Griffey Jr. at the Masters.

Ken Griffey Jr. has always been one of my favorite players, especially during his days with my Cincinnati Reds. There is something special about watching someone with that kind of passion, talent, and eye for the moment.

And it got me thinking about something I have always enjoyed: photography.

I love seeing a beautiful photograph. You know the kind I mean—the one that makes you stop scrolling, stare at it for a moment, and maybe even takes your breath away.

I’ve taken some pretty good photos with my iPhone over the years, but lately I’ve been thinking about taking photography a little more seriously.

As I continue dealing with Parkinson’s, Myasthenia Gravis, and now Dementia, I have had to accept that I am no longer able to run. Running was a huge part of my life, and losing that ability has been difficult.

But maybe this is an opportunity to discover something new.

Maybe I can trade running for photography.

And there is another reason this idea excites me.

I am having more trouble with my voice these days. Sometimes finding the words or getting them out the way I want to can be difficult.

But a photograph doesn’t need a voice.

A photograph can speak.

It can tell a story.
It can capture emotion.
It can make someone stop and think.
It can show beauty in places we might otherwise overlook.

And perhaps photography could give me another way to raise awareness about Parkinson’s, Myasthenia Gravis, and Dementia.

I could use the images I capture to tell stories about this journey, while also reminding people that there is still beauty to be found in the middle of difficult circumstances.

I’ll be working with a limited budget, so I would really appreciate any suggestions from photographers or people who know cameras.

What would you recommend for someone getting started? What older or affordable cameras would be good to experiment with?

And if anyone has an older camera, lenses, tripod, camera bag, or other photography equipment sitting around that you aren’t using anymore and would be interested in donating, I would be incredibly grateful.

I don’t need the newest or most expensive equipment.

I just need an opportunity to learn.

I’m honestly excited about the possibilities.

Maybe I can’t run anymore, but I can still chase moments.

Maybe my voice is becoming quieter, but I can still tell stories.

Maybe my body has changed the way I move through this world, but it hasn’t taken away my desire to find beauty in it.

So perhaps this is the beginning of a new adventure.

A new journey.
A new creative outlet.
A new way to speak.
A new way to raise awareness.
A new way to see.

And who knows?

Maybe the next beautiful photograph I take will tell a story that words never could. ~OC ❤️📸

#Photography #ParkinsonsAwareness #MyastheniaGravis #DementiaAwareness #CincinnatiReds #KenGriffeyJr #PhotographyJourney #Overcomer #NeverGiveUp #FindTheBeauty #NewBeginnings

My Medical Rap Sheet Doesn’t Get The Final Word

Today’s a new day!

Here is my medical rap sheet.

  • Crippling Arthritis — 2002 (Ended up being cancer)
  • Cancer — 2003
  • Parkinson’s Disease — 2007
  • Myasthenia Gravis — 2009
  • Gastroparesis — 2015
  • COVID Long Haulers — 2022
  • Type Two Diabetes 202 (medication induced)
  • Cluster and Migraine Headaches — 2024
  • Dementia — 2024

Looking at that list, many people would probably assume my life is over.

They would assume the best years are behind me. That my dreams have ended. That all that’s left is surviving.

But they would be wrong.

Every single day, I choose life.

I choose to keep making memories with my beautiful bride of twenty-six years. I choose to laugh, to love, and to appreciate the moments that many people rush past.

I choose to continue advocating for other patients who need someone to remind them that they are more than a diagnosis.

I choose to keep fighting against human trafficking because there are people who desperately need hope, justice, and someone willing to stand in the gap.

Does that mean this health journey is easy?

Absolutely not.

There are days filled with pain. Days of exhaustion. Days when my body reminds me of every diagnosis on that list.

But years ago, I made a decision.

This health battle would never become my identity.

My diagnoses describe some of the battles I face—they do not define the man I am.

I refuse to allow illness to steal my purpose. I refuse to let disease dictate my joy. I refuse to surrender the calling God has placed on my life simply because my body doesn’t always cooperate.

Instead, I choose to keep living.

I choose to keep loving.

I choose to keep serving.

I choose to keep overcoming.

If you’re walking through a battle today—whether it’s a health crisis, grief, depression, financial hardship, addiction, or something no one else can see—I want to encourage you.

Don’t let your battle become your identity.

Keep fighting.

Keep making memories.

Keep dreaming.

Keep showing up.

Keep loving the people around you.

Live your life to the fullest, even if it looks different than you once imagined.

Champions aren’t defined by the battles they face.

They’re defined by the courage to keep getting back up.

So today…

Choose hope.

Choose purpose.

Choose joy.

Choose life.

And whatever comes your way, keep overcoming.

Live like a champion. ~OC

Flashing Neon Sign

Today’s a new day! As with many neurological illnesses there is nothing noticeable about my condition. It’s not like a broken leg or arm where there is a cast which is obvious when seeing the person. But I cannot tell you how many times I have heard the same old words since my diagnosis last fall, Todd, you do not look like you have dementia.

I often wonder if it comes down to the fact that people feel uncomfortable talking to me about it, so they say the first thing that comes to mind. Which at times can come across as very insensitive and judgmental. Since my diagnosis of early onset dementia caused by my Parkinson’s, I have had several people tell me I do not look or act like someone with dementia. Or Todd, maybe you’re just dealing with an infection of some kind and just need to take some antibiotics. I would be overjoyed if that was actually the case. But I have some amazing doctors and they didn’t come up with this diagnosis lightly.

What does dementia look like? There is no cast or bandage to put on it. I guess I could wear a flashing neon sign that says, “HELLO, I HAVE EARLY ONSET DEMENTIA!” that lets people know of my latest diagnosis.

But seriously, I am walking through a very new and strange season of life, but I know I am not the only one. It simply gets frustrating when people decide to find a different diagnosis or make you doubt your current state of health because they do not like the diagnosis. It can be irritating and cruel when people doubt you and your medical team. Believe me, no one wants to sit in a doctor’s office and hear the words “You have early onset dementia.”

I do think that part of this attitude is because people have a hard time believing someone in their 50’s could have an “old person’s” disease. Also the topic of dementia is not an easy or fun subject to talk about. It can be easier to just ignore it or try to explain it away.

I also believe people have their own preconceived beliefs about dementia and I and many others suffering from this horrible disease do not fit in their picture of dementia.

So please do me a favor. Stop putting your personal beliefs or opinions on those suffering from a visually invisible disease or one that you don’t like. Life with dementia is already hard enough. Thanks for listening. ~OC

My Life With Dementia

Today’s a new day! As I continue to walk through this crazy beautiful health journey, I have always wanted to be upfront and honest when sharing my journey with you. So this morning, I want to share a post I have been working on for several weeks. It’s my life with dementia. I apologize in advance for the long post.

When I was diagnosed with young onset dementia last year, part of me thought there has to be a mistake, but it was also a relief to have some answers on why my life seemed a little out of focus. But it was still hard to hear “you have dementia.” Like so many people diagnosed with young-onset dementia, I was still planning a future with my bride. How was dementia showing up in my 50’s?

But here I am, almost a year later.

What I have learned is a dementia diagnosis isn’t the end of life. It just means life looks a little different.

Of course my life has looked a little different for the last twenty-three years dealing with multiple health issues. But over the last two decades, my faith and life experiences have taught me it’s possible to live a fulfilling, purposeful, and even joyful life even while dealing with the uncertainty of declining health. A diagnosis of dementia was not going to change that. At least I hope and pray that will be the case.

So as I walk out this journey called dementia, I wanted to share a few things that are working for me. This is not a neat how to live with dementia list, because dementia is not an easy follow these instructions and everything will be okay disease. No, dementia is a unpredictable roller coaster ride. Every day brings new challenges, but also new opportunities.

My hope and prayer is that this blog post will help create conversations. If you’re living with dementia, or supporting someone who is, I hope these tools help you live a full life regardless of the diagnosis.

My Dementia Toolbox:

I choose to live each day with Hope and Purpose.

I choose to live a life full of new adventures. Never stop making memories with family and friends.

I choose to maintain my independence as long as possible.

I choose to continue connecting with family and friends.

I choose to adapt to the changes dementia brings and never give up.

I choose to hold onto my identity and what makes me “me.”

I choose to keep learning new things each day.

I choose to live out my life and faith.

I choose not to avoid the declines that dementia brings, but to make the most out of every day and refuse to let dementia silence me.

Finally, living with dementia is not an easy journey. There are moments of loss and frustration, but there are also unexpected discoveries, laughs, and the good will of family and friends. ~OC

Dear Dementia,

Today’s a new day! As most of you know, I was diagnosed with Young Onset Dementia caused by Parkinson’s last September (2024). As I have walked through the past few months, I have thought about this diagnosis and what it means for my future. So I thought I would write a letter to dementia. Hopefully it makes sense.

Dear Dementia, I often wonder if you were a person, what would I say to you? So often dementia tries to fill me with anger, sadness and frustration. But thankfully, I am able to fight off those emotions most days. But some days all those emotions get the best of me.

I think I’ll start with I am a little frustrated with you dementia. I dislike that you’ve made sharing my thoughts and having conversations a little tougher these days. I am a little frustrated that being social has become a bit more difficult for me. Since I am in the early stages of dementia, I have learned a few tricks to hide my struggles from people. But I cannot hide those struggles from myself and that makes me frustrated at times.

I am frustrated that you try and fill my days with grief, loneliness and sadness. I am saddened that some friends find it too difficult to call or visit because they do not know what to say. I am frustrated that you’re trying to take away my memories too, with you being all consuming; you sometimes make it hard to remember how things were before you.

But dementia despite all the frustration sadness and grief, I still choose to live with hope and embrace every moment of life. My bride and I still talk about future plans and trips. We will not allow you to become our identity. We celebrate those days I feel like my old self. Almost like the fog has been lifted. I embrace those days because they will not always be around. I embrace simple moments with family and friends a little more these days. I am thankful for those friends who still choose to treat me like me. Please keep doing that. Even on those days, I might not totally seem like the old me.

I am thankful that God continues to walk this journey with me. He is bigger than dementia and all the other health issues trying to take me out. They may get the best of me some days, but they will not get the victory. No, that belongs to God and I will continue to hold onto that truth.

Dear Dementia, in some ways you have taught me the true value of unconditional love, and I will use that to defeat you. I will never give up on loving my life, loving those in my life and never ever give up on beating you. You’ve brought pain and suffering to so many people’s lives, snuck in and attacked the most vulnerable. But by working with medical researchers and families affected by your cruel actions we will learn new ways to defeat you. One day I will be part of ending you, as you will never be able to take away the unconditional love that fills me up and guides me along this crazy beautiful health journey. ~OC

That’s What Friends Are For

Based on my earlier post, several people reached out to see what they could do or what I might need. As I continue to move through this new phase of dementia, there are plenty of tools and games to try and keep my mind sharp. Some of them help and some are still in the testing phase. The one thing that has proven to help, is visits and phone calls from friends. So when people asked me how they can help, I encourage them to call or visit. So I will leave the ball in your court on how you choose to respond to this post. Please know I am always praying for you. I pray everyone has a beautiful weekend. ~OC

Life with Myasthenia Gravis

Good Morning! More writings from the “Lost Writings of OC.” I thought I would share a little bit about my Myasthenia Gravis (MG) experience with you today. I originally wrote this in 2024 and updated it several weeks ago. As I share this with you, my MG is getting much worse.

Today’s a new day! Myasthenia Gravis (MG) is an autoimmune disease that causes muscle weakness. But what exactly does muscle weakness feel like? To understand more, let me walk you through a typical day with MG.

For me it feels like I’ve run out power. In general, I feel it’s a huge effort to move when I’m very weak. When my legs are weak, they feel heavy and unsteady. I feel like I cannot move them or trust them to hold me up. The weaker I get, the closer and closer my steps get to each other, until I have to stop and lean against something or just sit down.

Also, I get pain in my hip flexors – basically my butt. It’s the same kind of pain you get from overdoing a workout: an achy soreness that feels like you have overused the muscles. These days, I deal with hip pain on a constant basis.

When my shoulders are weak, which is most of the time lately, I feel like I just cannot lift my arms. Like there are heavy weights holding them down.

My neck continues to get weaker. I just cannot hold my head up. It falls to the side or down, or I have to prop it up with my hand on my chin and my elbow on a table, or with a U-shaped neck pillow and a high-backed chair. As my neck weakens, I develop achy pain in my upper back from trying to hold my head up. I sometimes get a nauseating gagging sensation from my throat collapsing.

Eating with MG can be a challenge from having to take breaks while eating, to choking on solids and fluids. Sitting down to eat or drink is a major undertaking. I also start to slur my speech, and I get short of breath from minor exertion, or sometimes just sitting still.

I always have muscle weakness, but it gets more severe with heat, exertion, lack of sleep, infections, or other stressors. Summertime can be very challenging. Extreme cold is not my friend either.

Based on my weakened lung muscles, I am unable to take deep breaths. This causes issues on so many different levels. These days, every breath is a struggle.

I have to stay on top of my medications for the Myasthenia Gravis. I have to take one of those medications four times a day. Oh, I better not miss those dosages or things can go down hill pretty quickly.

I try to dress in cool fabrics and wear layers in winter. And I try to protect myself from sickness by keeping my vaccines up to date, wearing a mask when needed , and using hand sanitizer or washing my hands frequently when I am out of the house. I tend to fist bump and avoid shaking hands or hugging.

You know how much I love to walk, but that is getting harder these days. I have added a walking stick to help with my balance. This is a far cry from my marathon days

My medical team continuously tells me I am a one in two billion case with all of the multiple diagnosis. With Myasthenia Gravis, I fall into a small group of people being diagnosed with MG after having their thymus removed. My cancerous thymus was removed in 2003, but I was not diagnosed with MG until 2009. I will not go into what the thymus does, but feel free to research on your own.

How friends loved ones can help

One thing my friends and family do for me that’s immensely helpful is helping to educate themselves on Myasthenia Gravis so they can explain it to others and better understand my daily challenges.

I only have a few people besides my bride, who truly know me and my MG that well, but they are lifesavers. They’re also the ones I’ll talk candidly to when my MG gets me down. I cannot be relentlessly cheerful all the time, but I try.

I hope this gives you a better understanding of what Myasthenia Gravis looks like and how it affects my life on a daily basis. Each day is a struggle, but I continue to push forward and look at all the positives in my life. I encourage you to do the same. Go have a great day! ~OC

Dear God, Sometimes the pain is so great, I cannot think beyond my current struggle. On hard days, please ease my pain and help me focus on Your goodness one day, one hour, one moment at a time. Let Your overwhelming peace wash over me and remind me Your mercies are new every morning (Lamentations 3:22-23). There are days when I beg you to take the pain away. Days I just don’t have the strength. In those desperate times, I ask for Your unending strength to sustain me. I cannot do it alone, but with You all things are possible (Matthew 19:26). Amen

Year of Reunions

Happy Friday dear friends! As I continue to run this crazy beautiful health journey, friendships continue to mean more to me than ever. I love when I am able to connect with the friends I have been blessed with over the decades.

As I have walked through this health battle, I have been to many funerals. It’s just part of the journey. At those funerals, many people gather to pay their respects, talk about how much the person meant to them and reflect on the good times. I often hear people share if they would have only had more time to share everything they wanted to share with their loved one or friend. Oh, do not forget about all the flowers. So many flowers.

As I thought about the above scenarios, it made me realize I do not want that to be my story. People gathering after I am gone and wishing they would have visited more or shared something with me. So here is my crazy idea for 2025. To everyone who calls me friend, let us all commit to getting together once a month to hang out and celebrate each other. Of course I realize some people would not be able to make every month, but if you could make it to a few gatherings throughout 2025, I would be forever grateful. For those that might not be able to make any of the gatherings based on geography, I propose we commit to meeting on Zoom once a month. No excuses for not being able to connect and share life together. We could even plan individual monthly phone calls if that works better for you. Based on my health, maybe we could do a few “Road Trips Reunions.”

As my health continues to decline and I deal with the new diagnosis of dementia, spending time with my friends becomes more important each day. So if you would be interested in making the “Year of Reunions” a reality, please let me know. We still have time in January to kick things off. Nothing fancy. Just friends getting together to celebrate friendships. Oh and no flowers required. Have a wonderful day. ~OC

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