Tag: Parkinson’s

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

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Timeless

Today’s a new day! Being a cancer survivor and dealing with multiple health issues forever changes your relationship with time. It seems to pass so quickly, and there’s always a question about how much of it you’re going to get. At times it can be overwhelming. But maybe that’s why I always loved running. A 5K, 13.1 or 26.2 run can feel timeless if you’re embracing every moment of the journey.

Before I had to quit running a number of years ago, running almost made me forget my health issues. As I continue running this crazy beautiful health journey, I realize time marches on whether we are ready or not. I am as ready as I’ll ever be. Let’s go! ~OC

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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

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My Life With Parkinson’s

Good Morning! I wanted to share a bit of my Parkinson’s experience with you today. I was diagnosed with PD in 2007. The disease is starting to take its toll on me, but I continue to live with an attitude of hope. I originally wrote this in 2019 and updated it the first of 2025.

Today’s a new day! Living with Parkinson’s takes hope, persistence and a strong will to live. Because Parkinson’s never takes a day off. Parkinson’s is a daily battle. In the presence of Parkinson’s, one must have courage, the strength of character, and for me a strong faith.

While there’s life, there’s hope. Each morning when I wake, I do a full-body inventory, thinking ‘Okay body, what awaits us today?’ I remain hopeful that my just-completed sleep has re-fueled my brain and re-stocked my body. Of course that’s on the nights I actually sleep. Cloaked around every fiber of my body is my unwelcome guest named Parkinson’s; however, the day has started anew, and there is much to accomplish. I use hope as an anchor to secure my body and mind against the slowly rising tide from Parkinson’s. There is still time while staying hopeful.

Living with a positive attitude makes a big difference. Before I get out of my recliner, it can be easy to feel sorry for myself. I have Parkinson’s, a progressive neurodegenerative disorder. And that’s the negative mindset Parkinson’s has provided but I try to never allow myself to stay there for very long. There are days that are going to be difficult; yet staying positive and focusing on the plans God has for my life is where I choose to place my focus. I choose to look at my life with a positive attitude. That is completely opposite of how this disease wants me to feel and live.

I have found living this journey and sharing my story has been a privilege of a lifetime. I start each day with a prayer to focus on what plans God would have for me on that particular day. I choose to stay engaged with the everyday activities of life. Things are starting to get much tougher these days, but I make the choice every day to embrace life to its fullest. I remind myself there is much left to accomplish in my life even in the presence of Parkinson’s. I will close with a prayer I lift up to God every morning:

Dear God, thank you for another day. Simply use me today. This is going to be a good day. I remain hopeful not hopeless, positive not negative, happy not sad, and driven not complacent. Thank you for Your strength, wisdom and courage as I walk through this day. Amen. ~OC

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A Day In The Life

Today’s a new day! Ever wondered what a day living with chronic illness and health challenges looks like? Today I will take you on a journey into the twist and turns of a day living with long-term health issues.

From the moment I wake up, I’m already facing barriers. My chronic illnesses make it difficult to get going. For those not aware, based on my health issues, I have slept in a recliner for about the past twenty years. It’s just too hard to get in and out of a bed. Every day is a balancing act where I have to be mindful of my energy levels and make sure that I’m taking time to rest. 

An Introduction To My Health Journey:

In 2002, I was diagnosed with multiple forms of arthritis. That year was filled with a lot of experimental treatments. Then in 2003, I was diagnosed with cancer. Thankfully I was able to have surgery to remove the tumor and never had to walk through the struggle of chemo and radiation. Let’s speed things up. From 2007-2024, I have been diagnosed with Parkinson’s, Myasthenia Gravis, Gastroparesis, Type 2 Diabetes based on all the steroids, had a stroke, diagnosed with cluster headaches and just a few months ago was diagnosed with early onset dementia. That’s my rap sheet!

What My Night and Morning Looks Like :

Based on my neurological issues, I am up and down most of the night. So I never wake up feeling rested. I wake up stiff, so I need to move around and take a host of medications in the morning. Of course meds have side effects, so that can be difficult.

Since I deal with gastroparesis, eating has been a major issue for many years. That makes taking in fluids and food a huge and painful task. So every meal, every day is an adventure.

My mornings are dedicated to spending time with God, journaling and trying to exercise. For me, walking is the best type of exercise for me. I never know how many laps I will be able to get in. I have to be careful not to overdo it. If I do overdo it, my body will pay for it the rest of the day. I spend some time each day for reflecting on life and looking at how I can hopefully encourage others as I continue running this journey. These days, I tend to take a lot of short cat naps. Over the last year, the pain has increased, so that’s a daily struggle. Unfortunately, pain meds and gastroparesis do not really care for each other. So most days, I just live with the pain.

One thing I choose to do everyday is get dressed. I never lay around in my sleeping clothes. It makes me feel good to get cleaned up and get dressed.

My favorite part of any day is spending time with my bride and friends that choose to reach out. Spending time with loved ones is very important to me. I love sitting around and enjoying great conversations. Also, I try to read every day. My love for reading has been challenging the last few years, since it’s hard to stay concentrated. I also spend time listening to music each day. Music can make everything a little bit better.

In the evening, Laura and I like to talk about our day and possibly watch a little television. Based on my day, my bedtime varies. But since I sleep in my recliner, I can fall asleep anytime my body and brain allows me to. Every night is an adventure.

What I consider a daily self-care must do:

Writing about what I’m grateful for in my journal helps me remember the positives, even on those really hard days. Living with long-term health conditions can be exhausting and can be very negative if you allow it to get on top of you. 

Several people have asked if I had one day without pain and could step away from my health journey what would I do?

I would lace up my running shoes and go for a very long run. For those new to my journey, in my healthier days I was blessed to complete 350 marathons.

Another question people asked me a lot: Is there anything I would like to share about daily living with chronic illness and life challenges?

There’s a lot, but I do not want to make this post any longer than it already is. One of my hopes is, people will realise that we never know what someone else is really going through. So be kind and respectful. It doesn’t help when people tell me how I should be living out my health journey. Just be supportive and walk through this journey with me.

By sharing what my day to day life is like, I hope I can raise awareness of the bigger picture as people only see snippets of my journey online or see me on my best days in person. I am not sharing this for pity or sympathy and I am not complaining. I just want to give you some insight into this crazy beautiful health journey.

The Takeaway:

Writing about my day living with chronic health issues has been quite eye opening to me to see how much life has changed over the years. I have a strong need to celebrate the love and support I have received over the years from family and friends. Writing this post has let me see how faithful God has been to me, as I continue to run this beautiful journey.

I hope that you have found this post to be a helpful insight into life with with long-term health issues. There are so many people walking through a tougher battle than me. So if you know someone dealing with chronic illness, take the time to reach out to them and support them on their journey. ~OC

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Prayers Up!

When it gets deep in the night

Where time seems to stand still

I can hear my heart beat and my thoughts screaming and that’s not always a good thing

It’s going to be one of those nights

Where sleep is a distant dream

Sometimes the voices get loud

And the hallucinations seem so real, I have to remind myself they’re not legit, just a short circuit in my brain

But through it all, I stand tall

Not allowing all those voices and thoughts to become real

I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all

I will focus on the prize

Not all the junk, this disease

tries to steal from my mind

I keep fighting, gettin off the canvas

I keep running towards the One who

clears the cobwebs and reminds me

I am His precious child

I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all

I will continue to fight through the

night, all the negative thoughts

that keep me from counting sheep

and getting a good night sleep

I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all

The giants who try to bring me

down at night, are no match for

the One who used a boy named David to bring down one of the biggest

giants of all

I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all

It’s time to be Brave

It’s time to keep Overcoming

It’s time to be Fearless

I am ready to Battle

Refusing to back down

I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all

I am focused on the mission

Not going to backdown

Not going to run away

Going to walk with the King

I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all

As the night slowly creeps on

I will press into the promises

of my King, thankful they get me

through another night, time to be

fearless and pray through it all

I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all

As the night moves on and

My thoughts begin to wonder

the adrenaline starts flowing

and God’s angels get moving

the morning light will soon come shining

So, I will keep standing tall

Lifting up my prayers

to the One who created it all

I will keep fighting, refusing to fall

choosing to embrace faith over it all. ~OC

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Experiencing Peace

Today’s a new day! Along this journey called life, we all deal with fear. Fear can hit us during what we thought would be a routine doctors appointment. Fear can hit us when test result comes back with more questions than answers. Fear can hit us when we watch the news or scroll through social media. We have all experienced fear in our lives.

Back in 2003, one of my doctors called me early one morning and shared he needed to see me right away. Then he made the comment “Oh and make sure you bring your wife.” A little fear hit me at that moment. Later when the doctor shared I had a tumor, the fear grew a little deeper. Fear, worry and anxiety. My wife and I experienced all those feelings sitting in that doctor’s office.

A few weeks later a biopsy revealed the tumor was the size of golfball and was cancerous. Once again, fear, worry and anxiety smacked me in the face. Things seemed overwhelming at that point.

Then something amazing happened. As I laid in ICU hooked up to several machines, God took away the fear, worry and anxiety. Those feelings were replaced by peace, calmness and even joy. Yes, joy. What changed?

God reminded me of the week long fast I had done a year earlier during a missions trip. He revealed the reason I had fasted was to prepare me for this very moment. Peace flooded my room and heart at that moment. In that moment, I completely turned my health situation over to Jesus and trusted Him to walk me through my unknown future.

Even though I had been filled with fear, anxiety and worry, Jesus was right there with me. He shared hope, love and peace even as I was overwhelmed with so many different emotions. God never abandoned me in my time of need.

During that moment, I still had to deal with life as a cancer patient. But that unknown did not overwhelm me anymore. Jesus reminded me that He was bigger than any health issue I would ever face. I am thankful, I did not know my future would be full of more health issues, test, multiple doctors appointments and hospital stays. No, at that moment I was just filled with peace. A peace that has never left me.

Here I am in 2024, after overcoming so much, but still dealing with so many health issues. Fear and worry try to overwhelm me at times, but I am still experiencing that same peace and joy I experienced in that ICU room so many years ago. Knowing that Jesus is still bigger than anything life throws at me. Still living life with a thankful heart. ~OC

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3AM

Some mornings when I wake up early, I feel God using that time in an amazing way. But I have to be honest, some days those early mornings are tough. Today is one of those days. Let me share an early morning with Parkinson’s and dementia.

Today’s a new day! So it’s 3am and my brain is fully awake
I have been up since before 1am, but who’s counting? I am! Some days I wonder how my brain knows it’s 3am or earlier
Some days I wonder if my brain and I are on the same page

Oh, all the voices and noises
It can be a little scary, but I am thankful I haven’t gone a little insane

I think about my 3am folks going through the same, I wish I could reach out and lend each a helping hand

This early morning I look up to the sky
And sometimes wonder why my brain is so different
Some mornings I just want to cry
I wish I could just open my brain and hit the reset button, but that’s just a dream

On these crazy mornings, I wish it was just a phase
But I been running this race for too long for it to just be a phase
But a brother can still dream
Oh, wait a second you have to sleep to have a dream
There will be no more dreaming on this morning

All the voices and noises
It’s crazy, and I am thankful I haven’t gone mad
Thankful the voices don’t call me to danger
I wonder who’s up at 3am and would not freak if I rang them?

So at 3 am I go out on the balcony
And I talk to God, thank goodness He always takes my call
It’s 3am am I look up and pray

On mornings like this, I do not feel like anyone else

I feel like a stranger

It’s 3 am, once again
Talking to God because He always answers when I call
He reminds me that I am not like anyone else
That I am unique and wonderfully made,
That gives me some peace
I bet God gets a lot of calls at 3am
That gives me comfort as I look out over the night sky and I pray. ~OC

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The Journey

Today’s a new day! Cancer, Parkinson’s, Myasthenia Gravis, Gastroparesis Type 2 Diabetes (Steroid Induced) and Dementia. No person would ever want to be diagnosed with just one of these diseases. But ring the bell, chicken dinner, I have been diagnosed with all six. Thankfully, I have been cancer free for many years. But when faced with multiple diseases it does little good to sit around and complain about it. No, I have decided to run with it, embrace it and see where God takes this crazy beautiful health journey. ~OC

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Beautiful Gift

Today’s a new day! In late 2002, I was diagnosed with several forms of crippling arthritis. I would spend nearly a year taking multiple experimental drugs to help fight the arthritis. Unfortunately, those medications did more damage than good. Fast forward to August 2003, I had a chest scan done after coughing up blood on my way home from work. That scan would change my life forever. A few weeks after the scan a biopsy would reveal that tumor sitting in my chest was cancerous. The results would change the way I live life forever. After having the tumor removed a short time later, I thought the worst was over. I had no idea that four years later I would be diagnosed with Young Onset Parkinson’s. Of course my symptoms had shown up years before, but I never paid any attention to them. I blew it off as stress or fatigue. Then a few short years later, I would be diagnosed with Myasthenia Gravis. Maybe I should have started playing the lottery. Then about eight years later, I would be diagnosed with Gastroparesis. What are the odds? Well, some on my medical team have shared I am one in two billion. Where’s that winning lottery ticket?

Over these past twenty-two years, I have learned, and continue to learn, about living with persistent pain, near-constant fatigue and constant unsteadiness. I stress living, though I am also learning about dying. We’re all, always, dying-while-living and living while dying. My experiences with these multiple health issues simply make me more aware of death’s relentless work and also, mercifully, makes me more attentive to life’s beautiful gifts. Among them are:

The amazing gift of conversations, laughter, tears, prayers, encouragement and amazing times with family and friends.

The beautiful gift of music and books.

The beautiful gift of memories from my running days.

The beautiful gift of a call or visit from friends.

The amazing gift of sunrises and sunsets.

The gift of a quiet morning before the battle of another day begins.

The amazing gift of experiencing healing in so many different ways.

The gift of experiencing the many blessings of God.

The beautiful gift of hearing God speak to my spirit.

The gift of a quiet evening on the balcony with my bride.

The beautiful gift of almost 25 years with my bride.

The amazing gift of continuing to make beautiful memories with my bride.

The gift of outliving all the predictions of my death.

The gift of knowing God has everything under control.

In the time I have left (I am taking on the challenge to outlive the current prognosis), I intend to live close to the veil, at the threshold, and at the feet of the God upon whom angels descend and ascend. I hope to say what I hear, describe what I see, and offer what I receive because it is good, hopeful and healing. Every day, I choose to be The Man Who Refuses to Die and embrace the beautiful gifts of life. ~OC

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