Good afternoon, everyone.
We are fully moved into our new home. We still have some boxes remaining, but they are fine for the moment to reside in our garage. We have all our utensils, and I finally prepared a meal in the new kitchen just yesterday.
We have been extremely blessed by so many acts of kindness. Our daughters and niece prepared 14 pans of frozen meals for us to warm up on any day we simply don’t feel like cooking (which seems to be most days honestly). The first meal we will be trying is the beef stroganoff; I’m excited to enjoy this tonight. Additionally, many friends have come to visit Phil and tend to his needs while I run errands or keep appointments. Phil enjoys gathering with his friends for a Bible study group and a prayer group; more often than not, someone from the groups will pick him up and/or bring him home. Other sources of kindness include the ALS NE Ohio Chapter, our home church, and anonymous friends in the community. The kindness and generosity given us are overwhelming in a good way.
Since posting in January, we have switched Phil’s medical insurance companies twice – what a nightmare of “paperwork!” We are squared away now and most of Phil’s medical needs are covered, thankfully. It’s incredible how much there is to learn when selecting insurance. Phil is now insured by Medicare via a company called, Devoted.
On Wednesday, March 13, 2024, we met with several specialists at the Cleveland Clinic. While it was a long and intense day of visits, it was beneficial and informative. Some good news is Phil’s legs remain very strong; we were encouraged to keep him walking as much as he can tolerate. The issue with walking for Phil is how quickly he is fatigued in the effort to do so. Some speculation was generated about the fatigue. One area of concern is with his lung function. Back in November 2023, his lungs were functioning at 89%. In early March, the readings showed 79%. And after the exhausting day on Wednesday, his lungs were only functioning at 67%. The pulmonary specialist has requested a home sleep study that measures the Oxygen levels while Phil is sleeping. We are waiting for the pulse oximeter to be delivered so we can complete this test.
Another adjustment is my employment. I was approved for FMLA extended through April 23rd at which time I will have a big decision to make. I still feel a great hesitancy in getting back to working full time. There are so many responsibilities to tend to with Phil’s care. In the meantime, I am paying my employer my portion of the medical insurance premiums to maintain coverage for myself, and there are no more funds being deposited into our bank account due to the lack of PTO days remaining. So far, we are doing okay financially, even without the income; it’s a little tight, but it’s okay.
I’m happy to report that all our furniture has been delivered, including Phil’s lift chair (believe it or not, it arrived several weeks earlier than promised). We have enjoyed hosting small group gatherings in our new place. Personally, I have enjoyed the social interaction, especially the laughter; it really brings life into a home. I’m excitedly anticipating my piano being delivered soon; we’re still coordinating that endeavor.
I recognize that I wrote about the FTD (Frontotemporal Deterioration) in my most recent journal entry, but it bears repeating. FTD has affected Phil’s everyday tasks. Holding long conversations is not easy for him, and remembering people’s names is a struggle too. His long-term memory is still phenomenal. Chemistry, all things related to the Bible, and historical events are definitely present! Phil continues to bring laughter and joy to others with his stories and songs.
We are learning so much about both of these diseases, and I’m doing my best to vulnerably share with you about it. A website the dietician/nutritionist recommended is www.alsuntangled.com – this site reviews studies outside the traditional treatments for ALS. They speak from a more scientific and statistical vantage point, and I found it helpful in understanding what’s out there, what is potentially beneficial, and of course, also what is not the best option for a person with ALS.
I am truly thankful to those of you who have extended help to us. We appreciate each one of you so much!
Thank you for going through the journey with us.
We love you.
