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