The past few weeks have been so full! Phil and I are learning so much: God is with us, we are not alone, and how we think makes a big difference in our journey.
There have been many appointments and phone calls since the last journal entry. The most notable and the one about which I’ll share here is the series of back-to-back appointments with seven specialists held on Wednesday, October 11th. We saw Dr. K. who is the head of ALS Research for Cleveland Clinic. She talked about various trials in which Phil could participate and encouraged him to go forward with genetic testing (it’s a saliva test she coined as the “spit kit”). One of the trials is the Healey Platform where they are testing a new med that is to slow the ALS process and the progression of muscle weakness; it sounds promising. We also met with a nutritionist, an RN nurse, a PT, an OT, a speech therapist, and a representative from the ALS NE Ohio Chapter. There was an abundance of information provided! Phil’s favorite was the OT (Occupational Therapist) who gave us ideas of tools to help Phil to regain some of his independence. Since the last journal entry, Phil has struggled with things that require fine motor skills, like cutting food with a fork and knife, buttoning shirts, and zipping a jacket. The most challenging meeting that day was with the speech therapist. Please note that speech therapy involves more than linguistics and facial muscles; cognition plays a big role in this arena. The tests she administered revealed the effects FTD has already produced in Phil. This part of the day was indeed hard.
Through our journey, we’ve had many beautiful opportunities to enjoy blessings as well. Recently, Phil and I took a quick two-day getaway to Frankenmuth Michigan (where we honeymooned 37 years ago). We visited Bronner’s Christmas Wonderland and saw so many ornaments and Nativity scenes too. Somehow, I captured the wonderment in Phil’s eyes in a picture I took of him looking at varieties of Nativity scenes. While we were vacationing, we encountered such beautiful kindness from strangers; it was quite moving. The gentleman who carved the prime rib at Zehnder’s spoke uplifting words and spiritual blessings on both Phil and me. A lady who took our photo at the Cheese Haus shared her story and spoke kind words to us too. A stranger entering Bronner’s as Phil and I were about to leave ran to Phil’s aid when he fell out of the wheel chair (Phil attempted to get up before I had opportunity to lock the chair, and it rolled backwards as Phil fell downwards). A Canadian couple, who shared the hotel hot tub with us, prayed over us after sharing in a beautiful conversation. There’s mystery and a boost in faith through the kindness of strangers.
We are navigating changes as Phil’s journey continues. While Phil is still able to drive a car locally, we are seeing how challenging this is quickly becoming for him to continue. Getting in/out of his sedan is getting more difficult with each day. And the forgetfulness is a contributing factor too, like leaving the car door open and garage door open after returning from a quick trip. We recognize the day is soon coming for him to be totally dependent on others for rides. Another change is for me. I have decided to retire from the State of Ohio Teachers group (aka STRS) and completed the virtual “paperwork” Friday, October 13th. This will provide a little more income each month. For now, I am continuing to work remotely full time with my current employer (Imagine Learning, from Arizona). Thankfully, they have helped me apply for FMLA; currently, I am utilizing the intermittent version of FMLA to take Phil to various medical appointments. The last change I want to share with you is regarding our home. Phil is able to ascend/descend stairs, and our split-level house has several of them. We know that eventually stairs will become an issue for him. We are tossing around ideas for modifying our home or selling it and moving to another location. Both options will be challenging.
We appreciate your continued prayers and emotional support. Phil’s journey is tough, so we are clinging to our faith and persevering with a heart of thankfulness. We love you.
