An update in Andrea’s words…
Thank you for following along on Peter’s website and on our daily ALS journey. We are so thankful for your prayers, encouragement and support. We continue to trust in God for peace, hope, strength and joy.
Without going into major medical jargon here is what is going on with Peter and this disease:
Respiratory system: Peter’s breathing numbers are starting to decline more rapidly now, they have gone from 79/80 in February to 59/61 now. He will need to use his Bipap breathing machine more to counter- act the loss in respiratory function. He is also having daily medicated breathing treatments to help stop the wheezing reflex that he has.
Communication: This has become more difficult for us now as Peter’s fingers have lost strength and dexterity. But, we are thankful for technology and he is learning to use his new EyeGaze system. This device allows his eyes to become the mouse and when he blinks it selects the word or letter and it speaks for him. Peter is still using his computer and iPad to communicate but his typing ability has slowed significantly. He manages to update his website, facebook and tries to answer emails.
Mobility: Peter has slowly begun using his power wheel chair. While he is still able to stand and walk slowly, his balance is off due to upper body weakness. He can fall over very easily and get hurt as he cannot use his arms to break his fall. This is an emotional transition for all for us but we are thankful for safer mobility with his wheelchair.
Nutrition: Yikes, Peter has lost another 4 pounds since February. He weighs the same now as he did in high school (173 lbs.). Since he can no longer eat without choking all food must go through his feeding tube. We are adding more nutrients and protien to his formula to increase his calorie count. He needs to put on some pounds.
Hands, Arms and fingers: Peter’s arms are now limply hanging at his sides and he is not able to hold or lift anything. You can imagine all the daily stuff we do with our hands arms and fingers that he is no longer able to do. It takes us a while to get ready each day but I am learning to wash, shower, and dress Peter more efficiently.
Emotionally: We have had some really down days recently, with so many losses hitting at one time. But, every time we get down there seems to be someone or something that lifts us back up. Maybe it’s all those prayers that are being said… God and his people are taking good care of us and we are thankful. I don’t know how someone without faith, family and friends could go through this disease.
Spiritually: Peter and I both have a certain peace about our situation that is hard to describe. I think it’s a gift from God. We find comfort in his reading his Word and listening to praise music, and in the abundant kindness that is shown to us daily. We find joy when our situation is used for the good of His Kingdom and we are hopeful about the eternal future we will have together.
1. To stop the decline in Peters respiratory system and his wheezing.
2. That Peter can adjust to the Eyegaze system and wheel chair quickly.
3. That Peter would stop losing weight and gain some.
4. For Andrea, rest and strength so she can continue to care for Peter.
“The Lord gives strength to his people;
The Lord blesses his people with peace”
In His Hands always,
Andrea and Peter