Tag: challenges

2AM Thoughts

Today’s a new day! It’s 2am on this Tuesday morning. I have been unable to fall asleep. It’s just one of those crazy nights with Parkinson’s and Dementia. So I have walked around the house more times than I can remember. I have watched several YouTube videos to pass the time. Finally, I have decided to share my experience and thoughts with you. Writing is still something my brain allows me to do on occasion. Lately, God has filled my brain with many thoughts. I feel an urgency to write as much as possible before I can no longer do that. Tonight, my brain is extra active. That’s not always a good thing.

I have good days and bad days as I navigate through the multiple health issues that are slowly robbing me of so much. On a bad day, I cannot do anything at all. My energy levels are low and I feel fatigued. The only way I can describe it is that I feel like I have run a hundred marathons in a very short amount of time. I feel totally drained.

But I have lots of coping strategies. I choose to use those days to pray a lot more. I choose to reach out to friends even though I know, I will not hear back from the majority of them.

I think it’s important to have something that gives you a sense of purpose in life. I try to share my journey to help encourage others walking through their own life struggles. If I can help just one other person, that’s enough for me.

When most people think about neurological issues, especially dementia they think it’s all about memory loss. But I have cognitive issues also- trying to figure things out can be difficult and frustrating. Also too many voices at one time can be overwhelming. I get frustrated and anxious if I am struggling to follow the conversation. I also deal with a lot of rigidity and pain, which creates so many issues.

Over the years I have lost many friends as I have walked through this crazy beautiful health journey. I believe a lot of people have a difficult time talking to and relating to me. But I am still me. My story has just changed a little. A lot of times when Laura and I are around other people, they will address questions to her, not me. My prayer is that people would see the person, not the disease.

But I am blessed that a few friends have decided to stick around and not jump ship. I hold those friendships very close to my heart.

I choose to embrace each moment of life. I try to share my love and thoughts now. Not waiting for the perfect moment. Because the perfect moment is today. Laura and I do not wait for the perfect moment to buy that gift or take that trip. Now is the perfect time. Now is the perfect time to take care of future arrangements. Which we have done. I did not want Laura dealing with all of that on her own.

It also means we’ve had really indepth chats about what quality of life really looks like. Everyone has to figure that out for themselves and their loved ones.

Life looks different every day. What I could do yesterday, might be more difficult to accomplish today. I continue to live my life with my cup overflowing. I try not to beat myself up too much when I cannot do something anymore. Because there are still many things I can do. So today, I choose to embrace the now and what I can accomplish today. ~OC

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Don’t Back Down

Stand up for what’s right, don’t be swayed

By the voices that try to make you stray

Be brave, be strong, and hold your ground

Fight for justice, let truth be found

Raise your voice, let it be heard

Speak out against injustice, undeterred

Don’t let fear silence you, don’t back down

Stand firm, wear your heart in this town

Be a beacon of hope during the dark times

Shine your light, let it guide the way

For a brighter tomorrow, a better day

Stand up for what’s right, come what may

Your voice matters, your actions too

Make a difference, see it through

Stand up for what’s right, be bold

Create a world where love never grows old. ~OC

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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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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

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Potholes in Life

Today’s a new day! Last night after my doctor’s appointment, Laura and I drove around town a bit. There is so much construction going on around us. Also a lot of potholes and roadblocks to navigate around. At times, I felt like I was on some type of ride at the fair.

On our journey through life, we also face many bumps and potholes along the way. There are financial, relational, and medical trials that will come into our lives. What we do when we come to a bump in the road is usually slow down or come to a complete stop in order to better assess the situation before moving forward. We must also keep a certain balance ourselves, so as not to falter or fall down. There are times when Christian friends will come alongside us and help us to navigate these bumps in our lives. At times, if we become stalled for a long time, they might gently urge us and encourage us to move on and continue on the road of life.

“Those of us who are strong and able in the faith need to step in and lend a hand to those who falter, and not just what is most convenient for us. Strength is for service, not status.” ~Romans 15:1

As we were driving around town, it was only Laura and I paying close attention to the road construction around us, that saved us from hitting one pothole after another. It also helped that we knew some of the potholes were coming, so we were able to avoid them. Knowing the road allowed us the grace to prepare ourselves for the bumpy ride.

But what about the times when we don’t know what lies ahead of us on this journey called life or what’s around the next corner? In those times, we need to turn directly to Jesus. He knows the road ahead, and we can always depend on Him to guide us safely through those bumps in the journey.

“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” ~Deuteronomy 31:8

Prayer for the Day: Dear God, help us to turn to You first when we face the bumps and potholes in our journey. We know that You are more than capable of helping meet our needs. Dear God, help our unbelief in times of trouble. Make us a people able to stand strong as we or a loved one walks through the bumpy moments in life. We pray all of this in your powerful and matchless name dear Jesus. Amen.

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Bearers of the Mat

Today’s a new day!

“And when he returned to Capernaum after some days, it was reported that he was at a home. And many were gathered together, so that there was no more room, not even at the door. And he was preaching the word to them. And they came, bringing to him a paralytic carried by four men. And when they could not get near him because of the crowd, they removed the roof above him, and when they had made an opening, they let down the bed on which the paralytic lay.” ~Mark 2:1-4

I have always loved this story. It truly demonstrates the love of friends and our need for solid friendships. The four men in Mark 2, went beyond normal friendship and became “Bearers of the Mat.”

These four friends saw their friend needed a miracle in his life. They heard Jesus was in the area, so they decided to pick up their friend’s mat and get him to the Great Physician. We have no idea how far these four men had to walk carrying their friend, just to get to Jesus. No doubt they were exhausted by the time they reached the door of the house where Jesus was. There they found a new obstacle. The house where Jesus was speaking was beyond packed. But these four men persevered. Their friend needed a miracle and they were determined to get him to Jesus. Even if it meant carrying their friend to the roof and cutting a hole into the roof, so they could lower their friend into the room where Jesus was speaking. Can you imagine what a sight that must have been? What an amazing moment it must have been when after all that hard work, these four friends watched in awe as their friend was completely healed by Jesus. What a day of celebration that must have been.

Every time I read the story in Mark 2, two questions come to mind:

1). Do I have friends like these four men?

2). Am I a friend like these four men?

I pray we will all take the time to check our hearts as we reflect on these two questions. I truly believe Jesus wants each of us to serve one another willingly and wholeheartedly. Let’s become “Bearers of the Mat” ~OC

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Are You Willing?

Today’s a new day! A lot of people want to achieve success in life, but are you willing to do the following:

Are you willing to fight through the excuses?

Are you willing to fight through the challenges?

Are you willing to fight through the negative talk?

Are you willing to put in the work?

Are you willing to make sacrifices?

Are you willing to give it all up for God? ~OC

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Attitude of Gratitude

Today’s a new day! As we move through the busyness of life, it’s easy to look around at everything we do not have instead of taking the time to slow down and be thankful for everything we do have in life. In the coming days and weeks, I want to focus on having an attitude of gratitude.

As I have walked through this crazy beautiful health journey, I have made the choice to be grateful for the lessons and blessings I have experienced along the way. I believe that decision has transformed my life and hopefully a few other people along the way. As a Christian, I have much to be grateful for. I have been blessed with the gift of salvation through Jesus, I have the Holy Spirit living inside me and I have a loving God who cares for me and provides for my needs. But if I am not careful, I can start taking these blessings for granted and focus on the things I do not have.

That’s why it’s so important for us to cultivate an attitude of gratitude. Living a life of gratitude can have a profound and positive impact on our overall health and our relationships with others. ~OC

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Vision

Today’s a new day! As we start this new week, let’s take some time to talk about vision.

“Where there is no prophetic vision the people cast off restraint, but blessed is he who keeps the law.” ~Proverb 29:18

Vision is the ability to see God’s plans concerning our future. Vision is revelation that gives life meaning, value, direction, significance and purpose. Vision holds endless possibilities of what could be and what should be. Without vision there is nothing that keeps our lives on track and we end up wondering through life with no purpose. Author and Educator Helen Keller once said, “The only thing worse than being blind is having sight but no vision.” If our vision is compromised, it’s like a boat with no rudder. We will aimlessly wonder around with no direction.

When we have clear vision it gives us the ability to imagine what our future might hold. Vision gives us the ability to dream big dreams. Living with vision gives us hope to make it through the tough days and moments in life. Vision inspires the depressed and motivates the discouraged. God created each of us for a purpose. Within that purpose is our vision for life. I believe purpose is knowing and understanding what God created us to accomplish in life, and vision is when we conceive it in our minds through faith and begin to live it out. Vision is a glimpse of our future that God has designed just for us. ~OC

Today’s Prayer:

Dear God, I pray you would bless each of us with vision and a purpose that can only come from you. I pray all of this in the matchless and powerful name of Jesus. Amen.

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Breakthrough

Good morning! As I have walked this crazy beautiful health journey the last twenty-three years, I have had many moments where I needed a breakthrough from God. As we walk into a new week filled with new challenges, I want to share some things I have done when I needed a breakthrough at different moments in my life.

Pray: This may seem obvious, but sometimes we get so caught up in the roller coaster of life we forget to pray.

But prayer should never be our last resort. It should be the first thing we do when facing challenges in life. We also need to call on some trusted friends to pray on our behalf.

“I wait for the Lord, my soul waits, and in his word I hope.” ~Psalm 130:5

Fast: When coupled with prayer, fasting is a powerful tool to use when you need a breakthrough. And fasting doesn’t mean you have to give up food. A fast is about sacrificing something, so you can clearly hear from God. He may asked you to give up social media, a hobby or tv. Some things do not break with just prayer alone. When you need a breakthrough, fasting is crucial to seeing it come to pass.

“So we fasted and implored our God for this, and he listened to our entreaty.” ~Ezra 8:23

Build Your Faith: I’m just going to be straight up with you: Every breakthrough that I have personally experienced came from leaning into the promises of God. Thankfully, He is so gracious that He has not left us to figure out how to grow in our faith on our own.

“So faith comes from hearing, and hearing through the word of Christ.” ~Romans 10:17

Be Patient and Consistent: As I share this last point, I must warn you that breakthroughs can take time. The breakthrough you need may not come the first time you pray – or the hundredth. It may take weeks or even years. We cannot control the time, but we know that God can. He is always faithful. Our part is to stay consistent. So keep on praying. Keep on fasting. Keep on listening to the word. Keep believing in God. Your day of breakthrough will happen in God’s perfect timing for you.

If you’re waiting for your breakthrough the best thing you can do is remember that it will come at the perfect time. So press in to God and be patient. Your Breakthrough is coming! ~OC

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