Tag: Dementia

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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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

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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

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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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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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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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Word for 2025….Guarded

Today’s a new day! For probably the last ten years, every December I ask God to give me a word for the upcoming year. This year is no different, even though this year has been a life changing year for Laura and I and the year is not over yet. But after a lot of prayer, the word God has given me for 2025 is Guarded. Some people might find that a surprising word as we get closer to entering a new year. But let me explain.

Many people know about my story concerning my crazy beautiful health journey. Over the years, I have shared my story and struggles on social media, in conversation, in books and even an award-winning documentary. I have been blessed to experience some amazing opportunities over the past 22 years. I have also experienced some great pain as more than one “friend” has used my story for their personal gain and discarded me after I was no longer the flavor of the month. I do not share this for any type of sympathy, but to let you know why I chose the word Guarded for 2025 and why I will have less of a presence on social media next year. The daily text of encouragement will continue for those friends God puts on my heart.

In 2025, I will spend more time cultivating the real relationships in my life and guard myself against those who only contact me when they need something or feel guilty. As I continue to navigate life with dementia, I do not have the energy or desire to put anymore energy into fake and superficial relationships.

No, 2025 will be spent making memories with those who truly care about me. Not just the “Miracle Story.” Those few friends who actually reach out to me without me always having to innate the conversation or get together. I am looking forward to a beautiful memory filled 2025.

What will be your word for 2025? ~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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