Imagine

Imagine being a healthy person like many of you reading this
Imagine beginning to feel that something isn't right but you have no idea what could be wrong
Imagine after nearly a year undergoing tests to figure out what is happening to your body and they tell you have ALS
Imagine the heartbreak you feel on the trip home after that, knowing you've basically been given a death sentence
Imagine eight months later being confined to a wheelchair
Imagine losing motor skills in your hands and fingers
Imagine your speech beginning to slur
Imagine choking on food and drinks losing the ability to eat
Imagine losing your ability to speak altogether
Imagine relying on others to provide your personal hygiene, toileting, etc
Imagine lying in bed unable to move or change positions
Imagine trying to engage in conversation and not being able to speak what's on your mind
Imagine typing with fingers that twitch and constantly having to fix mistakes because of it
Imagine the only muscles that work are my arms, which are getting weaker and you worry what will happen if they fail
Imagine having a sound mind trapped in a body that won't respond to my brains commands

​I've had ALS now for six years and though my mind is still the same, I look in the mirror and see a man wasting away, that was once a strong, confident, and self sufficient man. Nothing like my former self. :(  But I will still put my trust God and believe he has a plan and purpose in all this. The only consolation I have in all this, is the fact that what lies ahead for me will be way better than anything this world has to offer.

The words of C. S. Lewis  "Has this world been so kind to you that you should leave with regret? There are better things ahead than any we leave behind"

Imagine taking two hours to write this post

July 2021

This summer has been hotter usual. This makes it hard to breathe. I don't spend much time outdoors because it irritates my eyes and breathing is difficult for me. I usually enjoy being outside but it makes me so miserable. However, we did go to Virginia to visit some close friends of ours and had a good time despite the heat. I think it was the hottest weekend of the month.

 

On another note, we had a gender party to find out if we are having a granddaughter or a grandson. Guess what, I am going to have a grandson!  How exciting is that?

Due typing difficulty, I am keeping my blog entries short.

2012 Hershey Walk To Defeat ALS

Thanks for another good turn out for this years walk. Together we raised over $12,000 and had 99 walkers. Your support is greatly appreciated. The link is to a speech I did at the walk.

  http://www.youtube.com/watch?v=l6OKpER1Zkw&feature=youtube_gdata_player

May 2012

May has been a month filled with mixed emotions. Lately I've been struggling with a feeling I just can't seem to shake. Two friends of mine are fighting cancer. I must admit, it has left me wondering about God's love for us. It's like the devil on one shoulder and an angel on the other, having a war of words with my mind. How can God love you and allow disease to destroy your life, the little devil asks. Then the angel says, God loves you and has a plan for your life, do you trust him with that? In my heart I want to believe that but the other voice keeps taunting me, you can't really believe that do you? Look at you and your friends, how could you possibly believe that?
While my faith may have been tested, I still believe God has a plan and purpose for each one of us. The following is taken from my friend Shawn Smucker's blog.

"The fire rages in our lives, and in its wake we are left feeling disappointed, bitter, angry or depressed. Or all four. Or something else. The landscape of our life begins to feel charred and dead. Worthless. Mordor-like."

Sometimes it takes the fire to purge our lives so new new life can begin to flourish. As I process what God's trying to show me through all this, I'm reminded once again that God does care and love us despite our inability to accept what we experience in this life on earth. So, go to hell you little devil, because I refuse to listen to you anymore.

If you would like to read more of Shawn's blog go to http://wp.me/p1AFbN-1gH

April 2012

April was a month filled with some exciting events. We went to Florida for a week which will probably be the last trip that I will take like that. We had a great time and the weather was great. It was great to get away and soak up the warmth of the Florida sun. Kind of sad to come  home where the chill of winter keeps hanging on, but the warm weather will be here soon.

Another event was the Annual 5K Gordie's Run/Walk. A caring couple from church host this event to  help raise funds to help me with wheelchair modifications and medical expenses.Thanks to all who participated. I am forever grateful for all the support you continue bless me with.

Perhaps the most exciting thing in my life at this time, is I found out I am going to have a grand baby in November! I am so excited to be a grand parent.
I posted some pictures for you to enjoy!

March 2012

After a fairly mild winter, spring is here. I've been fighting a cold all winter which left me weak and lethargic. But I feel so much better now that I no longer have a cold. I love spring and see new life spring forth leaving the harshness of winter behind. Spring is like a new born baby, where new life begins and begins to flourish. Summer is the season of life where you grow to maturity and accomplish your mission in life. Fall is the season where your life starts fading and then comes winter when life dies off and the cycle starts all over again.

This month I was fortunate to enjoy another birthday. I guess God isn't finished with me yet. I feel fortunate to blessed with another year. I would like to thank everyone for the cards and birthday wishes. I feel blessed by the outpouring of love and support from each one of you. My friends had a birthday party for me at Angela's Cafe, including a  magic show which was awesome! Thank you for celebrating my birthday with me. Love you all!

January 2012

January didn't start out so well for me. I contacted a cold that I can't seem to shake. Needless to say, it has drained my energy level to the point where I have no strength left. Pneumonia has been ruled out so that's a plus. I'm currently on antibioctics, hopefuly they will work.

Right now my focus is to get well, regain my strength, and not grow weary in my walk with the Lord.
Thanks for your prayers

December 2011

Six years ago, I was diagnosed with ALS. When I was given the diagnosis of ALS, the only thing I could think of at the time was, I'm going to die. Most people live on average three to five years. I have exceeded that time span by a year.


I remember the first Christmas after my diagnosis was a sad time for me. The only thing on my mind at that point was how many more years I will get to spend Christmas with my family. Now I'm actually looking forward to this Christmas. As the years go by, I focus less about dying and more about living. I am fully aware of what this disease will do to my body, slowly rendering every muscle in my body useless, evenually leaving me paralized and unable to breathe, resulting in death. Until then, I intend to live and enjoy life as best as I can.


For some, the holidays can be a time of sadness and somewhat bittersweet due to the loss of a loved one, illness, or some other tragic event. My thoughts and prayers go out to those in that situation. I pray they will experience peace and joy during the holiday season, despite their situation.


One thing I learned, giving gifts is nice and a fun time with family and friends, but there so many around us that literally have nothing. How many of us need more stuff? That's all it is, stuff. Probably things we could do without. Why not bless those less fortunate and bring real joy to those in need. After all, Christmas is the time of year we celebrate the greatest gift of all, the birth of God's gift to mankind, Jesus the Savior of the world. So this year, don't forget why we celebrate Christmas and make this a time where we can give a gift to those that could truly use what most of us could do do without.
Hope you all have a blessed Christmas season a Happy New Year!

November 2011

Well here we are just a few months till a new year begins. Where has the time gone? It seems like this year flew by and it's all just a blur. What have you done to make this year a  memorable one? I'm not sure I can give you an honest answer to that question regarding myself. It sort of feels like I just exist, trying to stay positive through this phase of my life.  

I had a recent visit with the ALS clinic in Hershey, which I felt went fairly well. My breathing capacity dropped to 48%. They recommended nebulizer breathing treatments three times a day to help keep my lungs clear and help with phlem building up in my lungs. Seems to be working. All in all they were pretty pleased with my condition over all. I'm getting some modifications done to my chair.


Carla Whitley a long time friend of ours recently organized a walk in for the ALS Association in Atlanta where she lives. Emy was able to fly down to participate in the walk. Thank you Carla for doing this for me. Funding for research to find a cure for this dreadful disease is grossly underfunded compared to other diseases and every little bit helps.

October 2011

September 24h Buck and Verna held their annual Gordie's Day fundraiser for us. We appreciate their efforts and hard work they put into it to make it happen. We certainly couldn't do this journey without the funds it raises. All the funds raised goes toward my medical expenses not covered by insurance. I thank God for the love and support shown to us from everyone that so graciously give to help us. Because of  the weather, there wasn't a motorcycle ride that is usually part of the event, but all the chicken bar-b-que was sold! All in all it was a good day. I will post some pictures of the event.

As for me, I am doing pretty well. With the cooler weather setting in, I need to take extra care not to get sick. Every day is a another day I am blessed with. As this disease slowly robs me of my ability to function, I am reminded to appreciate what little I can still do on my own. Typing is becoming quite cumbersome and time consuming. It just takes more effort to navigate around the keyboard. I'm constantly hitting the wrong keys due to the lack of control of my fingers. But I'm grateful that I haven't lost complete function of my hands. There is always something to be thankful for if you don't dwell on what you can no longer do. I'm trying to keep a positive outlook through it all. Your prayers, generosity, and support are greatly appreciated, thanks!

September 2011

Ten years ago our nation was attacked by terrorist destroying the World Trade Center along with over  three thousand lives. I still recall that day like it happened yesterday. I remember  I was walking past the fitness center at work and saw a group of people gathered around the TV watching  the first tower on fire, smoke billowing up into the crystal clear blue sky over New York City. as I watched the second plane fly into the second tower, I knew our nation was never going to be the same again. I went home at lunch and I took my dog for a walk like I did everyday. But on this particular afternoon walking along, I recall everything  seemed so surreal. The surroundings seemed extra quiet as I was contemplating what I had just witnessed like time was at a stand still. I had a sick feeling in my stomach. That was five years before I was given the diagnosis of ALS.

Five years later, I was diagnosed with a disease I barely even knew anything about. Much like that day on 9/11, I was left with a sick feeling of hopelessness and despair. I knew my life would never be the same again unsure of how many years I had left to live. Most people are given three to five years after diagnosis. I have exceeded that by a year and a half.

My life has changed dramatically since then. First, I lost my ability to walk leaving me confined to a wheelchair. Then I noticed my fingers not responding, my speech began to sound slurred. now I can't speak at all, eat, have difficulty swallowing, droll, get my nutrition through a tube in my stomach, my arms and hands are weak making it nearly impossible to hold onto anything without dropping something. I require help with every aspect of my personal care. This certainly isn't the life I wanted to live but with God's help, I have come to terms with my situation.

Since my diagnosis, I came to realize we are not guaranteed tomorrow. Just like those that lost their lives on 9/11, they didn't go to work that morning anticipating to die on that particular day.

I have made the decision to live out the remaining days of my life knowing God has a plan and a purpose for my life whatever that may be. I still have much to be thankful for. I have great people surrounding me that love me and a wonderful family, wife, kids, wonderful daughter in laws.I have been blessed with the best caregivers anyone could ask for. They have almost become like family to me and am extremely grateful for the care they provide for me.

Psalms 73:26
My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.

August 2011

This past week we went to Ocean City, MD for a week which was nice. The weather was good for the sun worshipers! Hot! It's always good to be surrounded with my kids and family. My wife, Emy did a good job caring for me without the help from our caregivers. I will be forever grateful for her love and support. The best moments in my life are when I'm surrounded by my family. Never take those you love for granted. Cherish every moment with them because you never know what the next day has in store.

Lately I’ve been feeling sad. I’m not sure I know why. Maybe it has to do with my progression and the reality of the effects are sinking in. But I think the biggest challenge for me right now, has to do with lacking the ability to engage in meaningful conversation with other people. It gives me the feeling of being alienated from the lives of my friends and the people I used to interact with. Even when I get out and around people, I still feel left out. There is no time to type out what I want to say to be involved in a conversation when I have something I would like to say. There are times I would love make a comment while driving along but I have to sit there in silence. I can't use my iPad while driving because my hands aren't very steady. I can communicate with my iPad with an app, but it's just not same. It speaks with a robotic sounding voice which doesn't really relay my true expressions. This has by far, been the most difficult aspect of dealing with ALS to date. I can't even begin to explain the isolation and loneliness it causes me to have.

Your prayers and support are greatly appreciated!

July 2011

Summer seems to be flying by rather quickly. Before you know it, the leaves will be falling and another season passes. That's how my life feels at times. I recall as child, I thought my life would pass at a much slower pace. Nothing to worry about but do my chores and the rest of the time was spent playing whatever we could imagine and pretend to be. anything from cowboys and Indians to motorcycle racing on our bikes. Since we didn't have a lot of toys, we made up our own creative adventures. If only life were that carefree and innocent now As the seasons in our life come and go, things don't always go as planned. I had a mental picture of how my life would be. Boy, did that change. I sure didn't think it would turn out like it did. Many bumps and bruises along the way, a few detours, and disappointments, here I am at this stage in my life. I am living my life with an incurable disease called ALS. This certainly wasn't the picture I had etched in my mind.

Now instead of playing guitar, riding motorcycle, golf, along with all the other plans I had, I'm living life with a body wasting away, rendering me helpless to do anything on my own. This definately wasn't the picture I had in my mind. Am I mad at God? At first I admit I was, but as time passed, I came to realize this is God's plan for my life and I have accepted it as such. I am in the winter season of life and when spring comes I'll be able to say, my life has been the one that God intended for me to live.

But through it all, God gave me a wonderful wife,I and two wonderful sons that love the Lord and married to the sweetest girls anyone could ask for. I am blessed! I can truthfuly say, God is good!

Thank you all for your support and prayers!