Author: Jon

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I had an appointment this week with my pulmonologist in Green Bay. Each visit I am asked to perform specific test to evaluate the strength of the muscles my lungs need to function properly. The average or normal person has a forced vital capacity (FVC) of 80%. Prior to my hip surgery in December 2018, my FVC was 74%. This is when I noticed my body wasn’t feeling right. In February 2019 my FVC was 59% and in March it was 47%. Today it was 36% and this brought up a conversation with the doctor that I again was not ready to have.

He said that I would need to begin thinking about whether I would want a tracheostomy. This is a huge life change not just for me, but for those who are caring for me. I am still uncertain at this moment what I will do, so I am asking you to pray that I make the right choice for me and my family.

I have images of being unable to speak, breathe or eat on my own. I know right now how frustrated I become when unable to communicate with others due to poor speech or being on my ventilator. Images of watching my grandson play and not talking to him or telling him jokes. Me being unable to tell my wife how much I love her. Unable to speak to my kids and communicate my love for them. Images of solitary confinement in my body fill my mind. How is that living? On the other hand, I would be around longer to see my kids and grandson grow older. As long as God allows, I would have Cindy by my side. Please pray I do the right thing.

The Day to Day

There are days I feel like giving up. My mind tells me I can do things I’ve done all my life, so I get out of this chair and pursue my interest to only endure a short time. My legs feel weak and my breathing is laborious. I’m fooled by “mind over matter.” Experiences like this make it difficult to stay positive. It seems like every Sunday I feel worse in the morning than other days. There have been a couple of Sundays I chose to stay home and not preach. Most of the time I power through and go to church so I can bring the message.

The apostle James tell us that we are to give thanks for all things. I’ve learned to thank God I’m faced with ALS. This experience has taught me more patience, compassion and understanding the feelings of others. My eyes have been opened to all the hurt around us each day. I thank God I’m still alive. I thank Him for the good days I have and the bad days I live through. I thank Him for my wife. Oh, how she has been a blessing to me. I’ve never felt so loved than since this journey began. Cindy has been so understanding and patient with me.

July was a busy month at the Wells household. On Monday the 8th my in-laws pulled in hauling a cargo trailer. In that trailer was a vertical platform lift (VPL) that they sacrificed to purchase for me. Well beyond his retirement years, my father-in-law worked alongside my mother-in-law to build a beautiful deck on the front of our house and installed the VPL. In addition to the deck, he installed a brand-new front door to accommodate a wheelchair. My mother-in-law made most of the meals, cleaned and did laundry as well. It was unreal watching these two work as hard and long as they did. I thanked them both often, and I kept hearing, don’t thank us… thank God for giving us the strength and health to be here and do this.   I have never felt more love on this earth than I have than the past few weeks. 

Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.

2 Corinthians 4:16

I may be the most fortunate man I know. God has blessed me with a beautiful life. He allowed me to marry the most beautiful woman I know, and she gave me three of the best kids I could ask for. On top of that, I have a family who loves me, and I am so grateful they spent the past few weeks with us. How many men could say that they were sad when his in-laws left after living with them a month? I don’t know any.

He gives power to the weak, And to those who have no might He increases strength.

Isaiah 40:29

My condition has progressed a little since my last visit to Froedtert Medical College in Milwaukee. My breathing is what has worsened. I have been using a non-invasive AVAP with oxygen for just over three weeks and it seems to be helping. My FVC was only at a 30, but they told me I have a Glottic closure which is not giving them an accurate reading. I am in the process of being fitted for a power wheelchair. With my breathing being such a struggle, I am not able to get out and do much, but hopefully when I get the wheelchair, I won’t use up so much energy walking and be able to get out of the house a bit more.

I appreciate all of you who have continued to follow our blog and pray for us. I cannot express how grateful we are and how much those prayers have empowered us.

In September we will be doing the ALS Association Wisconsin Chapter Walk. They provide grants and other resources to families with ALS in Wisconsin. They have already helped us, and now we would like to help them so they can continue to help many others like us! We would love for you to join us in the walk if you are local and if you can donate any amount to help us reach our $1,000 goal, that would be awesome! Visit the link below for details! GO TEAM WELLS!!

https://donate.alsawi.org/team/240675

In the past two weeks I have had the opportunity to share the gospel, and as a result, witnessed three souls come to Christ for salvation. Being allowed to tell the story of God’s plan for salvation is such a humbling privilege. One of the three who saw their need for Christ took place over the internet. In the years I have shared the gospel, this was a first for me. I can’t tell you how happy I was to use this platform to share Christ. It was immediately apparent to me that even though I am told my voice will fade to nothing, I will still be able to tell others about God’s saving grace.

It is by God’s grace I am still able to preach and for that I am so very grateful. Preaching is one of the events that brings me much joy. I will deeply miss it, if and when the times comes. (Cindy keeps reminding me that the Lord is returning soon and I will not have to endure all this disease offers)

This week I was asked by the athlete director of our high school to speak to the baseball program. He and I have been meeting weekly for coffee and through the course of our conversations he asked if I would like to share with the boys. I jumped at the opportunity! He told me I could speak on whatever I felt led to share. What a privileged opportunity to share the love of Christ with a group of young men from a public school. At the conclusion of our time every young man who attended walked up and shook my hand, introduced themselves and thanked me for speaking to them. I was totally humbled when one said to me, “The varsity team has been praying for you and we will continue.”

Through all the storms, God is still providing opportunities to do His good work.

23 except that the Holy Spirit testifies in every city, saying that chains and tribulations await me. 24 But none of these things move me; nor do I count my life dear to myself, so that I may finish my race with joy, and the ministry which I received from the Lord Jesus, to testify to the gospel of the grace of God.

Acts 20:23-24

On Thursday we went back to Foredtert Medical College in Milwaukee for a scheduled visit with the ALS doctor. We meet with 10 different people, all who work with different areas dealing with ALS. It was a busy morning with someone new coming in the room every 10 – 15 minutes. A “Forced Vital Capacity (FVC)” test is done each time I visit to determine the the strength of my lungs. The test allows them to see how much force I have when exhaling. In late February I recorded a 58% and Thursday my results were down to a 47%. We were told that I need to consider having a feeding tube inserted in the very near future. The urgency is that if the number reaches 40% it will be too late to insert. The reason is that the anesthesia weakens the diaphragm and lung muscles and if my FVC is at 40% I could go into respiratory failure. Although I do not ‘need’ the feeding tube to receive nutrition at this point, it is suggested having it done now and be prepared for when I will. The surgery to insert the tube will be done in a couple of week.

Would you please pray that my numbers do not drop lower and that this surgery is successful and without complications?

While the disease seems to be progressing faster, I know that God is still in control. He has final say in what happens to my earthly body.

Not one second of this ordeal is easy on Cindy or my children. I think of them so often. I do not want them to hurt or be in need. Cindy is working extremely hard each day. She not only works a full time job, but then comes home and has to do household duties that I am unable to do. The physical toll is great, but the emotional and spiritual is at least as difficult, if not greater. Please continue to pray for Cindy. She is truly the hands and feet of Jesus for me at this time.

In the near future, Cindy will need to be with me on a more regular basis which means she will not be working full time. It humbles me to mention this, however I know if it is not mentioned then the need would not be known to some. What I am dancing around is our financial needs. We were told this week that I do not qualify for disability due to lack of contributions to social security and I do not take a salary from the church. SSI is a possibility, but would take up to five months before we receive any financial help.

If you are able and willing…my daughter Machelle has started a GoFundMe page for us. You can access it by clicking the GoFundMe button at the right of this page or visit the “How you can Help” tab. If you feel God leading you to help in any way, it would be of great help and I know that God will bless you even greater.

We both are carrying large burdens but learning every day to place those in God’s hands and let Him carry them for us. I don’t know what we would do if we did not have Christ in our lives.

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.

Deuteronomy 6:7

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.

John 13:34

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?

Psalm 27:1

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