It’s gone….

Posted: September 27, 2012 in Uncategorized

Since my first real noticeable  symptoms were with regards to my speech, my ALS  is considered “bulbar onset,” referring to the bulbar part of the brain that controls the muscles of the throat, jaw, tongue and face.  Only 25% of ALS patients begin this way and unfortunately it means that those muscles weaken first.

Back in April, God gave me the opportunity to preach one more time to my local church family.  What a blessing and how thankful I am for that.  Here it is five months later, and what we knew was happening is now officially true…my voice is gone.  Almost completely.  Both volume and clarity.  The sounds that come out of me now are basically airy grunts that only a few close family and friends can understand;   And that’s mostly because they know what I need already.  I do have a higher pitched “hoot” to get someone’s attention when I need help, but that is getting weaker by the day.

We have met with many speech therapists who have graciously shown me all sorts of ways to communicate without speaking.  There are a lots of nifty devices out there.  I can’ t imagine that anyone would find it easy to give up talking, but for a guy who is a complete sanguine, never met a stranger and spoke for a living….well, I am struggling, to say the least.

Right now, I communicate mostly with my iPad and an app called “verbally.”  I can type in words or phrases and then hit “speak” and it reads it like a computer robot.  There are a few choices of voices and currently I am using the “Ryan” voice.  We have a blu-ray speaker that makes it loud enough to be heard from another room.

But is it the same as speaking?  Absolutely not.  The biggest frustration is the delay.  In my head, I have a quick witted comment or an encouraging word and it just won’t come out.  So I  hunt and peck on my keyboard with my middle finger, simply because it’s the only one still strong enough and not all curled in.  At home, I am getting more comfortable with this method,  but taking it other places is not natural at all.  It’s easier to  depend on my family to interpret for me, but I know that I need to to be willing to practice more with others.  I need to get over the awkward stage.

Since the Lord still has me on this earth, I know he is not done with me yet.   I’m learning that “silence is golden” and have discovered that with my close friends, it’s ok to not talk.  My two ears still work, so I am able to be a great listener now.

So, if you see me at church and I just smile and wave, I am not being rude…It’s the best I can do.  If you want to talk, be patient while I type and don’t expect a long discussion!

I will leave you with a song that goes through my heart and mind often….”Give me Jesus” by Jeremy Camp.

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Comments
  1. Jane Miniard says:

    Praying for your and your family. So sorry to hear this latest news, but you always put a positive thought on something so difficult. Thanks for your inspiration.

  2. Delphine Warbington says:

    Thank you for the beautiful song. He IS all we need… I am sorry to hear about your voice. I do remember these things you are speaking of, and while I to am thankful for all the techy ways you have available to help you speak, I know there is nothing to replace God given speech. I have been praying for Grace and Mercy that only God can give both you and Dena, as well as your entire family. I am going through Self Confrontation right now and I am discovering many things about God’s Word and as I do, I am using the gift of prayer to its fullest. May God shower your family with His loving comfort and help to endure all that He has in store…

  3. Pat Bradford says:

    What a blessing for us to hear your song before we go to bed….Joyce Slade , Rita Starnes Irma vallandingham. Alleen Cooper and me..pat are at butler state pRk for a fee days …your story is such a blessing too….we love you a nd are keeping you all in our prayers….keep looking up!!!

  4. Jeremy Harkins says:

    Thank you for sharing yet another inspirational message. I thought that I would pass along an inspirational “soccer” article for you to read (if you haven’t already). Apparently fans of the game like us are making a rapid difference in the American sports culture…
    http://soccernet.espn.go.com/blog/_/name/relegationzone/id/262?cc=5901

  5. Vermilyea, Tim says:

    patrick, i haven’t responded to many of your blog entries, though i’ve read them all. just to let you know that your transparency as you deal with the challenges God has brought into your life has been a cause for reflection… for praise to God for His enabling grace in spite of the challenges… for continued prayer for you and your family. and thanks for the post script from jeremy camp! it really is all about jesus – i need that reminder way too often!

  6. Kari Wu says:

    Praying for you and your family. We are thankful for your example to follow Christ, in this valley.
    “You have kept count of my tossings;
    put my tears in your bottle. Are they not in your book?” Psalm 56:8
    “In God, whose word I praise, in the Lord, whose word I praise, in God I trust; I shall not be afraid.
    What can man do to me? I must perform my vows to you, O God; I will render thank offerings to you. For you have delivered my soul from death, yes, my feet from falling, that I may walk before God in the light of life.” Psalm 56:10-13

  7. Russ Arbuckle says:

    With or without a voice you my friend do have JESUS. What a wonderful promise God has given
    you, me and all who believe….everlasting life with HIM in his kingdom. Continue your journey and
    with all the love and prayer we have we will be with you too. God is blessing you for HIS GLORY

  8. Diana Eisner says:

    Your family has been on my mind and heart the past couple of weeks. I now understand why God has prompted me to be praying more for you. I will always cherish the few hours Brian and I had with you and Dena in your home this past summer. That was a sweet time of being together. You both are such special people with a love for God that is contagious. We know God is using you daily to impact others by the way that you are living this out for His glory!!

  9. Ruthnne O'Brien says:

    Patrick, it is so hard to even know what to say to your last post! My heart goes out to you because I know you love to talk to people! Your attitude and trust in the Lord in spite of all that is going on is very encouraging to all of us! Just to know that the Lord is seeing you through and is there for you in the toughest of times is comforting. We love you! We continue to lift you up to the Lord – and so many are doing the same!

  10. Frank Wu says:

    We love you Patrick! You and your family are always in our thoughts. I pray that you feel God embrace daily. I praise God when ever you come into my mind, I wanted to thank you for giving me the opportunity to served with you as a leader and look forward to doing it again where ever God leads us!

  11. Jo Ann Gasparotto says:

    Dear Patrick,
    As I read this early in the a.m., I will take many of thoughts of you and the family throughout my day. As you said as long as God has you on this Earth, He is not finished with you yet. I am so thankful that through you, even your family members are being used and/or growing from this journey of yours. This journey is to all who know you. What do we do with what you share? Our total dependance is to be on Him alone. It is so evident that you are so eager to “the work ” until it’s done~
    We love you Patrick!!!!
    Jo Mama and Family

  12. Floss & John frey says:

    Praying for you and your family.

  13. Ashley Smith says:

    Praying for you guys everyday Patrick and Dena! We love you guys!

  14. My brother and my friend, Patrick,

    Don’t waste this incredible opportunity. Speak loudly of the goodness of our great God, though your bodily voice has fallen silent. Your natural voice, the one that reflects your true heart, still speaks clearly. And more effectively, if you can believe it; even if ‘the computer’s voice’ is the one that others hear now.

    It is ultimately the message and not the messenger that is important. It is your heart that reflects the accumulated wisdom (some of that, like me, was learned the hard way . . .) and your experience from which others need to benefit. And, as you know, there is much at stake here for all humankind: so much for this species to lose and infinitely so much more to gain.

    Use your heart’s voice to speak of timeless truths, Godly truths beyond this temporary ‘reality.’ After all, this condition is only temporary for all of us. Is the concept of time in God’s eternal universe really all that relevant?

    Speak of God’s love and mercy now, scream it with all the passion of your soul, not only to those who need it around you, but to those yet unborn – those to come. To those who can never meet you on this earth. To your grandchildren and great grandchildren and theirs and theirs. To those you will not meet until they catch up with you in heaven; who may come up to you, introduce themselves and tell you how your sharing of the truths you know about the gospel assisted in their coming to Christ. Again, don’t waste this. Our time here is precious and, for all of us, fleeting.

    May God continue to bless your spirit, my brother and what remains of your body. You are correct in thinking you are still here by intention. Be purposeful, resolute and strong in Christ!

    Patrick, we love you and the God that lives within you. The God who is sovereign and in control of all that exists. To Him be the glory in all things!

    Have peace in it, my brother. Your voice is more beautiful than ever! We are listening for more and we’re hearing you loud and clear.

    Dennis and Carrie

    • Janine R. says:

      I am so thankful for the clarity of your message to Patrick. Amen! May these words of encouragement and truth instruct him and bless him! To GOD be the GLORY!! Janine R.

  15. Jay Long says:

    Praying for you and family. Your blogs are a real testimony, and knowing you, you will glow to the very end; then when you arrive in Heaven, you will really glow! Thanks for your testimony to God’s grace.

  16. Linda Herhuth says:

    Patrick,
    I too am one who rarely replies to one of your blog entries (thanks SO MUCH Dena for continuing these!) but I also read them all and was so moved by this entry, and especially by the song at the end, that I felt like I needed to reply – JESUS IS OUR INHERITANCE! HE is what this life is all about and moving toward. When I come to die, GIVE ME JESUS!!!! I am crying as I type this because there is actually a part of me that is envious of you because, unless God intervenes in some unfathomable way, you are coming so close to being done with the groaning of your body and receiving your full gift of adoption as a son, the redemption of your body talked about in Romans 8!
    Thank you so much for being willing to share this journey you are on with us with so much candidness and love. We love you! We love your family! You and Dena are raising two wonderful children who are traveling this journey with you and are being built up and strengthened in the faith because of watching the example you have set for them over the years, but especially how you are dealing with this final stage of your life. None of us will ever know the impact that your journey has had and will have on this generation and on other generations to come, but thank you for your continued faithfulness in adversity because you are blessed and are continually being a blessing to all of us!
    “Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life which the Lord has promised to those who love Him.” James 1:12

  17. leslee says:

    Thank you for making the enormous effort to write about God’s unfailing love to you!
    May the God of all comfort and courage and strength continue to share all of these things for you, Patrick.

  18. Robert says:

    “Say to those who have an anxious heart,
    “’Be strong; fear not!
    Behold, your God …
    He will come and save you.’”

    Then the eyes of the blind shall be opened,
    and the ears of the deaf unstopped;
    then shall the lame man leap like a deer,
    and the tongue of the mute sing for joy” (Isa 35:4-6).

    What a day that will be when my Jesus I shall see! What a day, glorious day that will be!

  19. Becky Stoll says:

    Hi, Patrick. You may not remember us since we have only met once or twice. We are friends with Ross and Karen and over the years were Sunday School teachers of Dena and Tim. We wanted you to know that we pray for you and your family. We do not know or understand the mind of God and this is one of the times when it does not make sense to us; however, it does to God and that is all we need to know. Just hard to accept. We just wanted you to know that we hurt for you and your family. –Don & Becky Stoll

  20. jen says:

    patrick…I sure do need to be more like the Jesus in You! you may not have words to speak God’s truth anymore this side of heaven…but your life is SCREAMing His Gospel loud and clear!!!! May God comfort you when your flesh fights against giving glory to HIM even in this set back!!! I am soooo blessed to call you friend! You and Dena have been there for me in the dark valleys of my life and spoken truth over my life….and now as you go through a dark valley of your own…you both continue to live that Truth!! I love you guys!!! so grateful for the hope we have in Christ…hating this sin cursed world…longing for heaven!!

    love you,

    jen

  21. Mary Rodgers says:

    Think of you so often. You are in my prayers. What a testimony you are to all of us.

  22. Tim Ahlgrim says:

    I am praying for you and your family.

    Love you brother,

    Tim Ahlgrim

    National Director

    Vision For Youth, Inc

    John 10:10!

    765-543-3053

  23. abaldchick says:

    Patrick, you are speaking loudly and clearly with your countenance the words of Hebrews 13:8: “Jesus Christ is the same yesterday and today and forever,” You need no device for that! I am praying specific prayers for you and your family.

  24. Keith and Marilyn Kaynor says:

    Thanks for your latest blog regarding losing your voice. How frustrating it must be for you. Thankfully, Gold has provided a way for you to communicate, although slow and clumsy.
    We’re continuing to pray for you and the family as you cope with each new step. Hey, the Tigers just might prolong their season (remember how you said you were praying for that?) Thanks for the song, Give Me Jesus. Beautiful and inspiring.

  25. Jeff Stimpson says:

    Hey Patrick,

    Carrie & I have been reading your blog post and have been praying for you and your family. Although I have not commented yet, after reading this post I thought it was time for me to finally speak up. I cannot tell you how many times (mostly at TLC on the golf course or soccer field) your “voice” has encouraged me! As I read your posts I am reminded that your “voice” is still speaking words of encouragement into my life. I want you to know that your “voice” both in the past and now currently through your blog has been “God’s voice” to me encouraging me to continue on my journey with Him! Please know that God in his soverignty may have taken away the sound of your voice, but He is still using you to speak volumes in my ears!

    Thank you for sharing – encouraging – and speaking so loudly for Jesus!
    Jeff Stimspon

  26. Brian Teachout says:

    Patrick, we love you and love God more and more everyday to see how you cling to Him and love Him inspite of the ordeal you go through!

  27. Michelle says:

    Patrick you are helping John and I both! In ways you do not realize. Truly GOD is not done with you yet!!! Remembering you daily…

  28. Shirley Piatek says:

    Dear Patrick,
    We continue to pray for you daily. You have been such a blessing to us. We have seen you, trust in the Lord with all your heart and lean not on your own understanding, but in all your ways acknowledge Him and He sets your pathway straight. You are a living example of how to live our lives through adversities. I hear your voice in my mind, reminding the teens, and everyone, to “run hard after Jesus”. I can’t tell you how many times I have prayed those words, that I, my husband, our children and our grandchildren would do just that. So even though your voice is almost completely gone, your words and admonishions live on. God Bless You, Patrick, and God Bless Your Wife, Dena,and Your Children, Paige & Parker! Who are all being prayed for daily!

  29. Linda Ruby says:

    Patrick Dena and family
    You are in our thoughts and prayers, Carrie Tarvin too.
    Love Linda and Randy Ruby

  30. Kathy Struck says:

    e Dear Patrick, continue to read your blog and it brings back so many memories of Stefan’s blog he wrote while going on his cancer journey. Have you ever been able to get on Stef’s blog and read what he went through also. I believe it would be so helpful to you in the fact that he expressed how he felt while he was going through the chemo and pain. You are an inspiration to everyone that reads your blog Patrick, this is a hard journey you are on and God is walking right beside you and when it is so hard He carries you. I am praying for you and your family, as they are going through this with you. You have a wonderful church family and God has placed you with them knowing that you would be needing them now. Praying Patrick.

  31. Diane says:

    Patrick,

    We are continuing to pray for you and your family. I remember when my mom and my grandfather reached that point with their ALS, and they did not have the technology that is available to you. Thank you, Lord, for that help!

  32. Steve & Julie Thompson says:

    Patrick and Dena – Thank you for your posts as it speaks volumes regarding what God is doing in and through you. I am humbled by the journey that God requires of you. I am praying that His presence will be tangible as you face these hurdles together.

  33. Jeri corra says:

    Patrick I don’t know if you remember me or not, I graduated from BBC with you. My husband Howard also went to BBC with you. We were the old married couple from Woolsey Dorm. How adr has since gone home with the Lordd in 1999. Howard N Jeri Corra. Iam praying for you N your illness. Iheard about it from Diane Lytle… I also have anillness From Rheumatoid Arthuritis. It’s called Polymalgia Facitis. It affect the muscle, tendons, N ligaments mostlyin arms legs with a viral infection N I canuse or move my arms or legs. It comes n goesn younever no when when its going to hit you. it is eatremely painful. Steriods are the only thing to calm it down. Will Pray for healing for you that your voice comes back.
    With Christ’s Love N Blessing Jeri Corra

  34. jaredsayers says:

    Big Dawg!
    So glad to hear your words. You never cease to amaze me w/ your devotion to Christ. Thanks for the example. Thanks to your story, I have been able to witness at work here in the GR area. Also, Kyle Schneider & I have started to get in touch once a week to check in on each other. I can honestly say that w/o your teachings & example (plus those of Dena & all the youth group leaders) I wouldn’t be on this path of life.
    Continuing to pray that God is praised in this storm! Love you brother!
    Jrod

  35. Jessica says:

    Praying for you and your entire family (and friends) and trusting God to be your all in all, your peace, and your strength for this journey that you are on! I wonder if a pecs board/application might help you by you not having to type all the words or letters, you would just click on a picture. Might be worth looking into 🙂 This website gives multiple examples/programs available and if you want to hear/see what they sound like you can usually youtube them and find them …http://www.spectronicsinoz.com/blog/new-technologies/iphoneipad-apps-for-aac/ Just a thought!
    Know that you are prayed for all the time and cared and loved dearly (even by those who don’t know you outside of facebook/blogs/and knowing some of the lives that God touched through you) !!!

  36. Betty Tucker says:

    Bless your heart(s) ! Your blogs never cease to bless me, and I forward them on to friends that I know will pray for you and your wonderful family. I know the Lord has used you in so many ways, and also know He knows the countless people that your testimony has touched! Ron and I are so thankful you have allowed us to have a part in your journey. May His ” sufficient grace” continue to be present! Love to you, Dena, and the kids………The Tucker’s

  37. Dianne Schick says:

    Patrick, Dena, Paige & Parker,
    The Schick’s are praying for all of you. Please know that we love you & if we can do anything at all, 24/7, please call, text, email whatever…we are here for you.

    Love Your Brothers & Sisters In Christ,

    Steve, Dianne, Laura, Kiristin, Seth & Natalie

  38. Mel Stull, Jr. says:

    Reading Genesis 15:1 this morning and I wanted to pass this on to you: “Fear not, Abram, I am your shield”. Put your name where Abram name is located. There are several Fear not’s in the OT. Just for us! Love ya bro!

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