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!

2011 ALS Walk

June 4th we had our annual Walk to Defeat ALS. It was a perfect day weather wise and it was a great day over all. Our team, Gordie's Groupies raised over $14,000 and had 96 walkers. I am grateful for the show of support from everyone that contributed to the cause. I hope a cure is found soon because it is a devastating disease.

People tell me how much of an inspiration I am to so many people. I certainly don't feel like it. But when I think about others that have inspired me, I think I get it. To be quite honest, I'm only doing what comes as a natural thing for me to do, and that is to trust God and let him have his way in my life.


I often picture it this way. I'm like a little boy holding on to my Fathers hand walking along and looking up at him, asking why did this happen to me? He looks down at me, smiles, and says to me, trust me son, everything will be alright. Content with his answer for now, we continue walking hand in hand. I have come to the conclusion I don't have to know all the reasons why things happen, but simply realize God has everything under control because that's what he said. One day, it will all make sense and we will be grateful for the lessons learned.

Some Thoughts About Easter

Wow, May is here already! How time flies by! This Easter, I have been thinking a lot about God's amazing grace and how incredible our heavenly Father is. Our pastor has been speaking about this the past several weeks and it just reminded me of how amazing and incredible our Father really is.
There have been times I questioned how God could allow some of his children to suffer, when there are those who despise God and seem to live healthy prosperous lives. God promises us our rewards in heaven while they enjoy their rewards here on earth.
Regardless of my my disease, I can say God is good and just. After all, he suffered more than any of us will ever have to. He gave his life so that you and I can have salvation from our sins. That is why his love for us is so amazing! There is absolutely nothing we can do on our own to receive God's amazing grace. He gives his grace freely to all regardless of our past history or how good we think we are. Like the story of the prodigal son, he is anxiously waiting for us to come to him no matter how dirty we are from the filth and slop of this world.
I love the song amazing grace that saved a wretch like me. It just resonates with me.
As for me physically, I'm doing about the same as the last report, other than that, my speech is no longer understandable and my fingers and hands are becoming weaker.
I'm trying to enjoy each day and make the best of my situation.

Dine to Donate

April 5th the Family Center of Gap had an event at Angela's Cafe called Dine to Donate to raise funds for me for an iPad. The iPad is a tool I can use to help me communicate. There are different applications available that make it possible to communicate. The one I'm using now is called Speak It. You simply type what you want to say and it will repeat it with an audible voice. I cant reply instantly but it is portable and gives me a way to be able to communicate with others. I'm extremely grateful for the staff at the cafe for their excellent service and for their generosity throughout the evening. Once again I'm humbled by the kindness and generosity of people in the community and friends. You all have made this journey a little bit easier to cope with. You all are truly a blessing and I can't thank you all enough for your support and generosity. Thanks for being a blessing in my life. You are sincerely loved and appreciated! God bless!

Five Years Ago

Five years have passed since I was diagnosed with ALS. A lot has changed since that dreadful day. Then I was still walking, driving, eating, talking, and doing all my own personal care. It wasn't long until my walking got more difficult, I had to give up driving, and needed some assistance with my personal care. Now I can't walk, talk, eat, drive, or do any of my personal care. It's amazing what we take for granted until we lose the ability to do the most simplest of tasks. But I trust God with a bigger plan for my life than what I can see. God provides comfort in every situation.

I found this prayer that seems to fit my thoughts perfectly.

Dear God, You know my heart and my heartaches. You have showered me with blessings and carried me through the valley of pain and sadness. Thank you for the Godly influence of special people in my life. Thank you for those who pray for and encourage me. I even thank you for the trials and hard times I have been through, for they have strengthened my faith. I praise you for giving me a spirit of love, hope, and acceptance rather than allowing me to become angry, bitter, and downcast. I praise you God, from whom all blessings flow. May I, in return be a blessing to you. In Jesus name, Amen

March 9, 2011

March 9 was my birthday. I am grateful for the gift of another year. Whether you are young or older, every day is a gift from God. My birthday was a great day. All the birthday wishes I received on facebook along with the tons of cards I got made me feel special and loved. I am so thankful or the love, prayers and support everyone has shown to Emy and me in our difficult journey with ASL. You all are truly a blessing God has given us. I am humbled by the outpouring of love displayed to me today. Thank you!
I would like to express my sincere thanks to the wonderful caregivers God has blessed us with. Irina is a special person with a heart of gold. She has a sweet caring spirit and is so positive about everything. She is very patient with me when I try to speak. Sometimes I think can read my mind and knows what I need before I even ask. She's also good for Emy. She provides her with encouragement and support. Not just a caregiver for me but also a true friend to
Emy. Trinity is one of the other caregivers. She does a good job as well with a light hearted attitude.
And then there's my wife and my sons and their wives who also take good care of me. I could not do this journey without them. I am truly blessed and I love each one one of them. I don't know what this year will hold for me but I know who holds the future and that's all that matters.

Febuary 2011

Today is a beautiful day which makes me excited for spring. This winter I didn't get out much due to the cold weather. I don't function well in cold weather. Several weeks ago, my infection came back around my feeding tube site. We were able to get it cleared up fairly quick so that was a blessing. Then I got a cold which set me back for a few weeks. Thankfully I was able to get over it before it got too bad. Hopefully I won't have anything else to deal with the rest of the winter.
I am thankful for my family and the love and support they provide. I thank God for a wife that loves me and is always there for me. I know it's not always the easiest thing for her to deal with but she never gives up. My boys and their wives are a blessing as well. They help out when needed and are very faithful to spend time with us. God has blessed me with an awesome family and I want to say I love you all very much.

Today

Today the weather is kind of crappy,
which really doesn't make me feel very happy.
I hate this life with ALS
but I guess God knows what's best.
I'm trying my best to understand God's plan for my life
Why he would allow a disease that brings me so much strife.
I pray for healing but healing hasn't come
But I know he can do it, because he did it for some.
Sometimes I wonder does he even care
But because of my faith in him, I know he is always there.
There are times when I can't feel him, but I know he is near
that's when I reach out to him and know I have nothing to fear.
All things work together for the good
I want to believe that and wish I understood.
He wants us to trust and obey
and promises to show us the way
Today the weather may be dark and grey
but it won't be long till there will come a brighter day,
If we remain faithful to the end
with him in heaven we will get to spend.
So when troubles come your way
and there seem to be no answers when you pray
One thing I know, that certainly is a must
His ways are not our ways and in Him we must trust!

January 2011

Christmas was a fun time with my family We exchanged some gifts and enjoyed the day together. What would I do without my loving family. The best gift they could ever give me, is knowing they have a heart to serve the Lord. They truly are a blessing!

As we look to another year ahead of us, we have no idea what it will hold for us. But one thing is certain, whatever happens, we can be certain God is in control. I want to learn to trust him no matter what comes my way. Like our pastor said on Sunday, this year, let's make an effort to trust God in every situation. How do we respond when life throws us a curve? let's purpose in our hearts to trust him no matter how we perceive things to be.

May God bless you in this coming year!

Christmas 2010

Aah the joy of Christmas. But for some it can be a difficult time due to the loss of a loved one or a family member suffering with a fatal disease or some other tragic event. Let's not forget about those in those types of circumstances. Give freely, shower them with love and prayers, anything to make their situation easier to deal with. God promised never to leave or forsake us no matter what we face. You never know what an act of kindness or love can do for someone going through difficult times.

April of 2006,I was diagnosed with ALS. By Christmas I was in a wheelchair. That was devastating to realize I'll never walk again. After that Christmas, I didn't enjoy the holidays all that much. Five years later, I've come to accept my condition and realize that this is the plan God has for my life right now. I can say, this year I'm actually looking forward to the holidays surrounded by family and friends. God is good in every phase of my life. Most of all, I'm grateful that God cared enough about me to send his Son to die for my wretched self. After all, that is why we celebrate Christmas.

I remember when I worked in the mall, I soon discovered Christmas isn't that joyous for a lot of people. What I saw were folks scurrying about, stressed out, irritated, complaining about long lines, and fretting whether this person will be happy with their gift. I had never realized how the world had distorted the true meaning of Christmas until then. I wonder did they even enjoy the season after all that.
This year when you're enjoying the fun and festivities of the holidays, show some kindness to those less fortunate, pray for those who are hurting, and give out of love like our heavenly Father loved us.
God bless you all!

Thanksgiving 2010

Thanksgiving, what exactly comes to your mind when you think about this holiday? For some it may be preparing for that big turkey dinner. For others it is day spent with family and friends enjoying good food and fellowship. And for some it is the start of the shopping madness trying to be the first to take advantage of the deals and promotions the stores offer.

For me, this Thanksgiving I am grateful for another year God has granted me. I try to enjoy each day I'm given. I look forward to spending time with my family. I'm thankful for a day set aside to reflect on all the blessings we enjoy. I think of all the people in this world that don't experience the material things we take for granted and yet we yearn for more. There are people in countries that have nothing but yet they are happy and thankful for what they have because of their relationship with God. Their happiness isn't in material things. In the end they won't mean a thing but our relationship with God is eternal.
This year I am thankful for all the blessings I have despite this disease. I am thankful for my relationship with Jesus because without him I would not experience his grace and strength that sustains me in these hard times.
So this year, when you're enjoying you turkey, don't forget about those less fortunate than we are.

As stated in my previous post, I have been dealing with an infection around my feeding tube site. After two months it finally seems to be cleared up or at least under control. Thank you all for your prayers.
Not much has changed other than my overall strength has gotten weaker. I spend most of my time listening to music, sleeping or on the computer. Sunday evening we went to a concert in Philly to see Needtobreathe. It was a fun time with great music shared with friends and family. With the holidays fast approaching, it gives me something to look forward to. All in all God is good and has everything under control.

October 2010

This past month has been kind of hard for me. I've been dealing with an infection around the peg tube site. The antibiotics my doctor gave me helped clear it up but then it got worse again. the type of infection I have is very persistent and hard to get rid of. So I went to Hershey to see the doctor that put the tube in. She put me on stronger antibiotics which seemed to work until I started to react to them. Now I'm back on the ones I was taking before. The site looks better but not sure what the next step will be. I may have to have tube replaced which is something I don't really look forward to. I guess it could be worse.
On top of all that, I'm having a difficult time with my inability to enjoy food, communicate effectively, and generally everything I was able to do before. But one thing I'm thankful for are great caregivers who take care of me. I really appreciate my family and the love and support they provide for me. they always make sure to hang out and spend time with me.
I'm in a little bit of a funk right now but it will pass. God always comes through and provides the strength and grace to face each new challenge that we face. All things work together for the good to those that love the Lord. Joy comes in the morning.
Thank you for your continuing prayers.

Gordie's Day

For five years now Buck and Verna put together a fundraiser to help us with the costs associated with this disease. It consists of a motorcycle ride, bar-b-que chicken and baked goods, car show, and activities for the kids. Thanks to Doug Groff for bringing the fastest buggy in Lancaster County or possibly in the world giving rides to those brave enough to get in it. All in all it is a fun day. The weather was absolutely perfect! Emy and I sincerely appreciate everyone involved to make this day possible and the hard work that goes with it. Also, a special thanks to Charlie Pennel for making the bar-b-que chicken.
We really appreciate everyone's support and generosity. With your help we are able to cover our insurance deductible and other expenses not covered by insurance. Thank you all for caring and making this difficult journey a little easier for us. Know that you're loved and appreciated!