We just returned from Milwaukee and wanted to make a post on today’s appointment as we know so many of you have been praying. We thank you for those prayers as the EMG was not as painful as the last one Jon had in January. However, the EMG test came back conclusive of ALS. The doctor said that Jon’s muscles are currently compensating and fighting the disease very well. ALS is very unpredictable and there is no time line the doctor could give us. There is a medicine that can possibly help tapper the progression, but it’s $1k a month and we will have to figure out if and how much our insurance might cover.
Our journey is just beginning and we have lots of things to start thinking about and preparing for. We can never thank you enough for those of you who have been praying for us on a continuous bases! We will be headed back to Froedtert on April 4th to begin regular visits at the ALS clinic.
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For those of you who are in Texas, we are currently working on making a trip back the last week of May. More details on that trip to come…..
We will be headed to Froedtert Medical College in Milwaukee on Thursday for another EMG. An EMG is not a pleasant test and is rather painful. They will be administering this test on Jon’s legs, arms, and face. His last EMG was in mid-January. Our prayer is that there will be no signs of progression, however; over the last couple of weeks, Jon has begun to have twitching in his arms and legs.
Please lift him up in prayer for the test to be as painless as possible and that if it’s God’s will he would remove this disease from Jon’s body.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Several times I have been asked “How are you doing Cindy?” I want to give the right response by saying, “I am doing good, God’s got this, and I know he is in complete control.” Although I do know that in my head, my heart wants to cry out and say, “I hurt. I ache. I feel alone and lost.”
We’ve endured a lot of hardships in our lives. But finally things were looking good for a change. We had plans, we had dreams for the rest of our future. In December Jon had a full hip replacement. We were looking forward to doing things together we had not been able to do for years. Financially we were finally seeing a light at the end of the tunnel. But then, those words came in the doctor’s office, “I believe you have ALS…….about three years”. I think my whole body went numb at that point. I kept waiting to hear her follow up with a “but”. It never came. Just an, “I’m sorry.”
On January 30th, 2019 the course of our lives changed forever. Nothing I do anymore is the same. It is tainted with thoughts of the future. I have to trust that my God has a plan, that he knows what he is doing. Jeremiah 29:11 says, ” For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” All I can do is cling to and trust those words from my Heavenly Father. To find a way through all this pain to grasp them and believe them like never before. I love this song by Selah, listen and let whatever pain you have be absorbed by the Father and may you find your trust in Him.
Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth! Psalm 46:10
I look around my house and see so many things that need to be done. Unfinished projects to unstarted ones. Each are necessary, and some are more important than others. Like most families, we either have the time and no money, or have the money but no time. Honestly, our problem is more the former. No matter what the project and resources, there always seems to be an unwelcomed issue that rears its ugly head. A roof leak, furnace breaks down, air conditioner compressor fails, or the flux capacitor freezes up on the time machine. Just yesterday Cindy said, “I just need time to stop so I can get caught up.” We have all felt this way from time to time.
We cannot stop time. However, we know how to spend it, lose it, waste it, and pass it. Sadly, it takes a lifetime for us to learn how to take time. We cannot take more time than each day allows, but I believe ‘taking time’ is meant to make the best use of the time we have been given.
I plan to invest the time I have on the things and people that matter the most to me. What is important to you? For me, aside from my relationship with Christ, it is my wife, kids, and grand baby. Investing in these people the things which are eternal is my goal.
“And these words which I command you today shall be in your heart. 7 You shall teach them diligently to your children, and shall talk of them when you sit in your house, when you walk by the way, when you lie down, and when you rise up.
Life for most can take many different paths. I’ve spoken with people who are bitter and angry because their life didn’t go the way they had hoped. For some reason or another, they felt or thought they should be happier, healthier, wealthier, or more advanced. You know as well as I do that life seldom turns out the way “we plan it”. Time goes by and before you realize it, days turn to weeks, weeks to months, and months to years. Each day comes and goes like the air coming and going through our lungs. I cannot recall what I did two weeks ago anymore than I can recall each breathe. Similarly we take for granted each day just as we do each breathe.
At the end of our time on earth it would be nice if we had no regrets. Now, I would be dishonest if I told you that I would not want more for my wife and children. It’s my opinion that most parents, especially dads want to provide to the fullest for their family. The “things” of this world will fade or rust away. If you don’t believe that, just go to the landfill one day and glance around at all the “things” people have thrown away because they were broken, rusted, or inoperable. Some of these “things” cost a lot of money. The only thing I am interested in is loving others and leaving this world with no regrets.
Charles Swindoll has said, “life is 10% what happens to you and 90% how you react to it.” Reacting is not often my best look. However, if I choose to respond in love, I find there are no regrets waiting ahead. Mr. Swindoll is correct with his ratio. Life throws curves, change ups, knucklers, and fastballs each day. It is our responsibility to respond accordingly. The only way is to ask ourselves, “what would Jesus do” at this very moment. Charles Sheldon brought this thought to us in his book “In His Steps” years ago.
Casting Crowns is one of my favorite Christian groups. I love the lyrics of their song titled, “Only Jesus”. In particular this verse.
Did I live the truth to the ones I love Was my life the proof that there is only One Whose name will last forever
Casting Crowns ~ Only Jesus
A pastor on the left coast said in a book a few years back, “it is not about you, it is about Jesus.” This is the absolute truth. Life is all about relationships. We have them from the day we enter this world. However, there is only one relationship that should matter the most, and that is our relationship to Jesus Christ.
A new commandment I give to you, that you love one another; as I have loved you, that you also love one another.
But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”
Matthew 14:27 (NIV)
Courage may be one of the English language’s misunderstood words. When I hear the word courage, I think of firefighters, police officers, military personal, etc. To me it speaks of one who willingly faces danger and gives little thought to their own life in doing so. This paints a picture of true heroes. I’ve been praying for courage to face the battle we have been told could come. I’m no hero. If I can be honest, when we were told what I’m faced with, I literally froze and couldn’t comprehend how this could be possible. I didn’t cry or freak out, I immediately froze up in my mind and tried to wrap my head around what I had just heard. Don’t misunderstand, tears found their way down my face. Each one filled with thoughts of my family, as well as, sadness and fear. Helpless and distraught are the only feelings I can recall from that morning in the doctor’s office.
And David said to his son Solomon, “Be strong and of good courage, and do it; do not fear nor be dismayed, for the Lord God—my God—will be with you. He will not leave you nor forsake you, until you have finished all the work for the service of the house of the Lord.
1 Chronicles 28:20
This morning I looked up the word courage and here is how it is defined by Webster; mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty. Another way it is defined is; the ability to do something that frightens one, or strength in the face of pain or grief. This is exactly what I am praying for; the ability to face this diagnosis that brings fear.
God has been providing a peace like I have never experienced. There is no doubt that the prayers of God’s people are being heard and He is dispensing peace and ‘courage’.
The Lord is my light and my salvation; Whom shall I fear? The Lord is the strength of my life; Of whom shall I be afraid?
Thank you for visiting this blog. Here, Cindy and I will try our best to keep family and friends updated on what we are referring to as the “new normal”. In January 2019 I was diagnosed with Progressive Bolbar Palsy which leads to ALS or amyotrophic lateral sclerosis.
How it all began
In October 2018 I began to notice my tongue felt funny and I was slurring some words, as well as, having difficulty breathing and crying for no apparent reason. On December 3rd, 2018 I went into the hospital for a total hip replacement. The surgery was successful and I was sent home to begin recovery. It was then I spoke to my doctor and asked to see a neurologist because I thought perhaps I may have had a stroke.
In January, Cindy and I went to Neuroscience Group in Neenah, WI and the physician there ordered a series of tests. I had blood drawn, a CT of the brain, and a EMG. The blood work came back showing signs of myasthenia gravis. After viewing the results, both my personal physician and the neurologist felt I had ALS. I was then referred to Froedtert Medical College to see an ALS specialist. On February 14, Cindy, Machelle, and I traveled to Milwaukee where we met with the specialist. After his personal examination he told us that it appears I have Progressive Bolbar Palsy (PBP).
The news was devastating to our family as the prognosis for this disease is not a positive one. We know we serve a mighty God and that nothing catches Him by surprise. As we travel this new journey, our prayer is that we will continue to praise Him and let our lives be a testimony of his faithfulness and goodness no matter the outcome.
What is next?
On March 14, we will travel back to Froedtert for another EMG, as well as, other tests. That same day a speech therapist will meet with me to begin exercises to maintain speech as long as possible, as my speech will be the first to go. I will begin what is known as “voice banking“. These are recordings of words and phrases I would use on a daily basis so that when my voice is gone I will be able to communicate with others.
We know that there may be many needs as time progresses. We have already had wonderful people reach out to us to see if there is anything they can do. Right now our only answer is Prayer! We have created a link to this page to post needs as they do arise. The family of God is amazing and we are so grateful to be a part of that. Thank you to those of you who are and have been praying. Words will never be enough to express how grateful we are for them and for you!
Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.” Psalm 91: 1-2