Breathing Easy

Posted: January 22, 2012 in Uncategorized

Thank you for all the prayers and support since my announcement of AlS on 12/11/11.  The cards and outpouring of love have been amazing.  The prayer groups that have added me to their lists spans the globe.  It is simply awesome.  Words can’t really express how you all make me feel.  I am humbled and grateful.

Specifically, many of you prayed for my first visit to the ALS clinic this past week.  Meeting Dr. Dobson, Dr. Newman and Stephanie, the R.N. coordinator, was a blessing.  They were kind, professional and funny.  I was treated as a normal human being!  (One thing that is not gone is my sense of humor and I look for ways to laugh now more than ever.)

Many of my questions were answered; some were not.  Simply put, no doctor can predict my future.  Really? I should have known that.  I do know that in my head, but I still had to ask:  How far along am I?  How long do I have?  What’s the next step?

With this disease, there is no exact progression of symptoms that occur at the same time and in the same way for every patient.  It can progress quickly and then slow down for awhile.  One person may end up in a wheelchair for a long time, while another dies without ever losing leg strength.  So how do I plan?  What do I do?

Apparently, God wants me to live day by day.  So easy to do when I think I am in control.  But now, when it’s in my face that I am not in control, I realize how weak my faith in God is.  My faith in myself often overtakes. I am a doer, a planner and a slightly over-the-top task oriented guy.

Dr. Newman assured me that my breathing is good, as is my leg strength.  He encouraged me to keep working and keep moving.  He also acknowledged the fact that since 4 months ago I was feeling great, but now am experiencing symptoms in every part of my body…well, that’s not good.

My greatest problems are with my speech and my hands.  Having help with buttons, belts & shoes is inconvenient, but not having my words come out quickly and clearly is by far my greater frustration.  My family is learning to jump in and help where needed.  I can still go to Sam’s Club for the cases of water and Gatorade, but someone else has to unload the car.  The doorknob coming into the house had to be changed to the lever style so it’s easier to open.  It takes longer to finish a meal and for a family of fast-eaters, this is noticeable.  I tire easily and my arms often ache; muscle cramping is now a normal feeling.

Many have asked what they can do to help.  Right now, there is nothing except prayer.  We are considering many options regarding our house: whether to sell and move or to renovate a few areas.  Again, hard decisions to make, especially when it involves finances, and  when we don’t know exactly what path this disease will take.

But God knows….and living one day at a time, trusting in Him….He will guide us.

Ephesians 3:16 “That according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being…”  (read on to verse 21 and it gets even better!)

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Comments
  1. Cheryl Marie says:

    Praying for you and your fabulous family Patrick.
    God is bigger than ALS or anything.
    Know that you are loved – by Jesus and by us.

  2. lorie smith says:

    I understand the frustration, thank you for speaking it plainly, praying 4 u, lorie

  3. Earl and Becky Short says:

    Nicely written … we continue to pray!

  4. Julie and Thom Goodyke says:

    You got it Patrick, you and your family will continue to have our prayers! Thank you for keeping us updated.

  5. Lucy Hilgert says:

    Is hard to understand God’s good work in us when he takes us through suffering, however, He knows why, we need to trust that we are so precious to him and that He allows the testing of our faith knowing well the gold in us will shine brighter. Keeping you in our thoughts.

  6. billie baucom says:

    Just reading your new post is such an encouragement to me, and I am sure to all who read your story. To see your trust and faith in God is a shining example of what all of us should strive for when we go through our own set backs. It is an awesome feeling to know that my prayer for you and yours is going up before the living God with all the prayers around the world.

  7. Alan Bonjour says:

    Definitely praying for you and the family. Adaptation is definitely a learning expedition in many ways, physical and mental. Standing with you Bro. We should get together some time.

    Having been myself through Cerebral Palsy, Crohn’s Disease, and now Spinal Cord Injury with paraplegia (I’m the bald guy in greying beard you’ll see walking with my sticks), I can say that God has not left you, He only wants to use you all the more, just now, it is not the easy job, but trusting Him in trial and storm.

  8. Carl & Lori Reichanadter says:

    Patrick, I love your transparency. Thanks for letting us all know more of the details …… this helps us pray more specifically. “Now may the God of peace, who through the blood of the eternal covenant brought back from the dead our Lord Jesus, that great Shepherd of the sheep, equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ, to whom be glory for ever and ever.”

    Carl & Lori

  9. JROD says:

    Patrick, Dena, Paige, & Paker,
    As we pulled into campus tonight, Stephanie Scites and I prayed for you once when I got the notification of the new post. A lot of prayer being sent up on your behalf from here at GV & the GR area. Glad to see ya this morning and say “hi”!

    Grace & Peace!!

    • Heather says:

      We are praying. Our little boys are praying. We hope they get to meet Mr. “Magoldrick”one of these days. Love, the Oechsner family

  10. Still praying, Patrick. In fact, I quoted you in my sermon today and our church prayed for you and your family.

    • Pat Bradford says:

      Dear Patrick..as I write this and knowing you..I am praying you will take a day at a time..in my own life I know that’s not easy even in the small things..we know all the answers..but even when our faith is small. HE IS FAITHFUL…..I keep thinking of your first year of camp..when Mary was a counselor ,and I was coming for a vist…you ask Mary ” what about the music?” she said ” don’t worry it’s my mom. She’s ok”..we love you all..and prayers

  11. Lisa Kotal says:

    Patrick,

    You are a blessing to us all and we are here to help you in any way possible. We just need to know what and when … just say the word!

    In Him,
    Allen & Lisa

  12. Praying for so many things…..among them, perfect peace that surpasses all understanding, that every one of your needs be met, and that He be glorified.

  13. Pamela E. Bennett says:

    It was good to get the update, we pray for you and your family often.

  14. Kerry Weishaupt says:

    Good Morning My Dear Freind, You are a great man with many strengths, and it does not need to come from your legs or arms. God will guide you and your family, or give you people with wisdom to help. Treat everyday with fun enjoyment, laughing, crying and praying. I will be calling you soon for lunch so I can spend some top notch quality time. KW

  15. Ron Lyle says:

    Patrick, thinking of you often, and how much i love you and your family. We will continue to pray for you, and i know God will be revealed in your life, and testimony. I will be traveling to Michigan in the next weeks, if you are up to it, certainly would like to stop by and visit. Don’t mind buttoning your shirt!

    Ron Lyle

  16. Les and Judy Johnson says:

    Patrick: Thanks so much for your updates. They mean more to us than you will ever know.

  17. Les and Judy Johnson says:

    Patrick: Somehow my previous comment got cut off.
    “It is in Jesus Christ, and in him alone, that we will find hope, and courage to face any crisis.”
    This is a quote froom Billy Grahams new book

  18. Tracy Mezzone says:

    Mya &I are continuely lifting you & Dena , Paige & Parker up in prayer!! Thank you for sharing this with us ! We serve an awesome all knowing loving God who will always give us comfort in our time of need! Love you guys!

  19. Keith and Marilyn Kaynor says:

    We are praying for you and the family! We have been touched by your testimony and I’m sure many others have been touched as well. May God continue to give you all grace for each day.

    Keith and Marilyn Kaynor

  20. Mel Stull says:

    Hey Bro, Ben and I were listening to this song tonight and we wanted to pass it on to you. We love you and family big time. The group is Seventh Day Slumber and the song is Love Came Down:

  21. Tim Tarbell says:

    Hi Patrick! Just wanted to let you know that we are thinking and praying for you and your family.

  22. Florence B. Frey says:

    Pat, Dena, Paige and Parker: Want you to know that Pastor and I are praying daily for you as well as the church where we are now doing an intrium.

  23. Kristina Lorio says:

    We were saddened to hear about this, Pat. You are in our prayers. PLEASE let us know if you need help with any of the adjustments needed around the house. Matt is a pro at changing door knobs 😉 we are just around the corner if you need anything at all! your words and faith are truly an inspiration to us.
    The Lorio Family

  24. Julie Rosol says:

    Patrick,
    When reading your post I couldn’t help but think of Psalm 16:9
    “In his heart a man plans his course, but the LORD determines his steps.”

    So easy to say and know, another thing to experience it first hand and truly have let go of control and live day to day as God plans!

    Thank you for sharing His story of your life and how we can best pray for you and your family!

    You are loved!
    The Rosol Family

  25. Mel Stull says:

    Carry Me! Hey bro, I thought of you when I heard this song!

  26. Shari Herbert says:

    Patrick & Dena, sometimes there are no words, just tears. Homebuilders has permanently added you to our weekly prayer list. I appreciated NBC’s Superbowl pre-game 7-minute segment by Peter King on former Saints player Steve Gleason, who suffers from ALS, and thought of you Patrick the entire time (check out an article on it at http://www.chron.com/default/article/Ex-player-ALS-patient-Gleason-pushes-awareness-3032528.php). To quote the article:

    “Many thousands of people who have ALS never had concussions and never played contact sports, so Team Gleason is less about investigating whether football is linked to ALS than it is about helping people who have to live with the disease,” said Fujita, who had an uncle who died from ALS. “It’s really about promoting technologies that help ALS patients feel valuable, survive and thrive in the process.”

    “Team Gleason also tries to provide extraordinary experiences for ALS patients while at the same time raising awareness about the disease, which the Super Bowl trip aims to accomplish. Fujita said the foundation also is exploring the logistics of a climbing expedition to the summit of Mount Rainier in Washington, Gleason’s native state, in the fall.”

    I can see you doing something like that. 🙂 I’m praying your health will enable to to in the fall, whether or not that is something that interests you–just that you’ll still have those kind of options down the road half a year. Thanks so much for blogging to keep the body informed of your prayer requests so we can intercede specifically for you and your family.

    (Mel, I love the songs you’ve been linking to.)

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