New Resources for Challenges in the Journey

Greetings! 

We are so blessed.  I am grateful for each one of you; we are particularly thankful for those of you who have visited Phil, prayed for him, sent cards, text messaged him, and taken him to his beloved Bible study groups.  “It takes a village,” so it is said, and we are walking with our village of very loving and caring people.

I am still adjusting to this new way of communicating with all of you.  If you haven’t already done so, you may want to click the Blog tab to view previous journal entries from the former site.  Each journal entry requires the password Dan!el31718 to gain access.

I mentioned in August’s journal entry that Phil would be having a series of appointments to meet with seven specialists in mid-September; we went on Wednesday, September 18^th.  While it was quite informative, the day was exhausting.  Still, we learned so much!

• Some good news we received on Wednesday is that Phil’s legs are still at 100% strength in spite of evident muscle loss; this is amazing!  While his legs are strong, he can no longer walk anywhere without assistance due to imbalance.  Over the past six months he experienced several falls, all of which were caused by losing his balance.  

• We learned that the source of Phil’s fatigue is the ALS and that we need to preserve his energy or at least choose the activity in which he wishes to exert energy.  The doctor talked about the “spoons” allegory; we only have so many spoons to use in a day.  We need to consider in which activity we want to consume a spoonful of Phil’s energy.  With this in mind, Phil was directed to use his power wheelchair inside the home more frequently.  

• The occupational therapist (OT) and physical therapist (PT) offered so many helpful suggestions to keep Phil safe and still moving at home.  My daughter and I already rearranged the living room to accommodate some of the changes.  We also will be ordering some devices to make life easier for Phil.  Some of these items are pretty cool and make sense, and others are eye-opening.  I’m thankful for OT and PT who have the knowledge and can recommend the appropriate tools.

• The nutritionist seemed satisfied with what Phil eats from day to day.  She encouraged us to set a goal of a daily consuming 2500 calories.  That’s a lot of eating!  She explained that 4 ounces of meat is about 500 calories.  We have been supplementing Phil’s diet with Owyn brand of protein drinks; his favorite flavor is caramel.

As you can see from these few notes, we received a lot of information.  We continue to encounter new challenges each day.  Phil is tired all the time; whether we have a full schedule or a restful day, he is constantly fatigued and worn out.  The FTD increasingly brings added difficulties. 

In August’s journal entry, I mentioned long-term care.  When the time comes, we are hoping to place Phil with The Woods on French Creek (french-creek.net), located on Colorado Avenue in Avon, Ohio.  This facility is a part of the Ohio Foundations Health Solutions, who intentionally contract with Ohio partners in caring for their residents.  Interestingly enough, Phil’s late twin brother stayed at a “sister” facility in LaGrange, Ohio, and they took good care of him.

Again, we are so thankful for our friends and are especially grateful to those of you who continue to help us.  I would appreciate more people intentionally visiting Phil. Whether it be for 15 minutes or as long as a couple hours, any amount of time is so valuable.  Please reach out and schedule with me.  While he doesn’t speak much during these visits, he truly appreciates the company and kindness extended to him.

You have become our “village” by living life with us through Phil’s journey.  

We appreciate each one of you.