This site will act as a safe space for Phil’s family to share his treatment journey and life updates as they navigate life with his recent ALS diagnosis. Friends and family will be able to see updates on Phil and leave encouraging comments for Phil to read.
How did we get here?
Phil was experiencing minor memory loss, so after a visit with his general practitioner he was sent to a neuropsychiatrist at Cleveland Clinic. The neuropsychiatrist and his cognitive team took Phil through all day testing and an MRI. The tests and MRI revealed that Phil had significant brain volume loss. His brain had experienced a significant amount of shrinkage. This brain volume shrinkage has affected the frontal, temporal, and parietal lobes. These three affect Phil’s abilities to problem solve, short term memory, body orientation, judgment skills and emotional traits.
Sadly, in April 2023, Phil lost his twin brother, Paul, to a battle with ALS.
It is believed that the combination of the atrophying of his brain and the loss of his brother triggered something in Phil. Two weeks after Paul’s passing, Phil began to develop ALS symptoms. After ALS testing and an appointment with an ALS specialist at Cleveland Clinic, Phil was officially diagnosed with ALS on August 7th, 2023. As of right now the biggest effect of the diagnosis is weakness on his left side and fine motor skills in his hands. Other struggles Phil is experiencing are making conversation, keeping his attention on one thing, fatigue, emotional regulation, and short-term memory. These symptoms are challenging to deal with, but the family is navigating it all with grace and understanding.
The brighter side is that Phil’s long-term memory is still intact. He continues: to have an amazing understanding of chemistry and mathematics, to be a dynamite baker, to sing his favorite songs, and to tell his silly jokes. While the disease has taken some things from Phil, it cannot take away who he truly is at his core – a man of God, a loving husband, dad, and grandpa, a lover of knowledge, and a brilliant mind.
Where do we go from here:
Phil is being treated by the best team at Cleveland Clinic’s ALS department. They are the leading specialists in ALS treatment and research. He is in great hands. So far, he has been prescribed three medications that will potentially prolong his life for up to 18 months. Phil will also begin seeing an ALS team of seven specialists as well as have follow ups with his ALS doctor; these appointments will be the foundation to settling a treatment path and adjusting treatment as they see fit.
We know that Phil’s future is written in Heaven, but is yet to be written here on earth. The family is holding fast to the Lord and prayers for healing. Daniel 3:17-18 says, “If we are thrown into the blazing furnace, the God whom we serve is able to save us. He will rescue us from your power, Your Majesty. But even if He doesn’t, we want to make it clear to you, Your Majesty, that we will never serve your gods or worship the gold statue you have set up.” God is still God no matter what.
Thank you for being a part of and showing your support in this journey.
The ALS awareness ribbon is red and the Lou Gehrig awareness ribbon is navy blue with white stripes. We encourage you that every time you see these colors that you lift up a prayer and a thought for Phil.
All our lives God has been faithful.
All our lives He has been so, so good!
With every breath that we are able, we will sing of the goodness of God!