Spa Day! Don’t let the smile fool you, our life is not a “day at the spa” right now. I have struggled so much with writing this particular blog entry that I am afraid I have failed to write anything for weeks now. I know that many people are concerned with how Gene is doing, but I have been at a loss for words. Due to our lack of spare time we are hoping that you will forgive us for our extreme tardiness in providing you with an update. We want you to know, however, that we have loved hearing from each of you who have taken the time to let us know that you are thinking and praying for us--for those that have sent emails, cards, flowers, brought meals, and given other tokens of love; you have been such a source of encouragement for us! We are so grateful, and we apologize that we are unable to respond to every person’s show of concern. In the past month we have had many experiences, insights, and challenges that we have wanted to share with all of you, but we will have to save them for other blog entries so that we can bring you up to date with what is happening.
Gene has lost most of his ability to move himself physically, except for some finger and facial movement. Even though he is unable to move most of his body, we have never been so busy. Our days begin so early and by the time our work is finished at night, it is very late. Gene usually wakes up in the middle of the night for various reasons. We do not have much down time in between; much of our time revolves around Gene's personal and medical care. We have a very small window in our day, usually in the afternoon, for anything extra--reading, receiving visitors, enjoying the sunshine, etc.. We will never again take for granted the pleasure of "leisure" time or the physical freedom to do the things we need to or the things we enjoy.
How can I convey in writing how difficult ALS is? We could not have imagined any of this in our wildest dreams. In past blogs we have told you about the business of our life, so we will not repeat ourselves here. Everyday is an overwhelming challenge. Like setting out on a dangerous expedition, I could never have imagined the obstacles we would encounter along the path of our journey; the pitfalls, and ordeals that we would encounter. The road on this journey has been crooked, bumpy, and treacherous. It feels very dark and scary at times; sometimes the way has seemed to be been hidden from us and we have felt very discouraged.
Even though our life is very hectic and consumed by the ravages of ALS, we thought we might share a lighter moment from our day with all of you. The picture above isn't exactly Gene getting pampered at some fancy day spa, though this is about as close as we will get to it now. This is actually how we get Gene's hair washed. Every couple of days or so, I bring out the inflatable wash basin and give Gene a good hair washing and a scalp massage while he lays flat in his bed--he loves it!
Here are some of the changes that have occurred since we last wrote to you:
1. We have ordered a very special communicative device; anticipating the gradual loss of the ability to speak. This device is called a Dynavox and is controlled by a system called Eye Gaze. Gene will be able to look at the word or phrase with his eyes and the Dynavox will speak for him.
2.We have made some modifications to Gene’s wheelchair because he is unable to drive it himself. This has not been especially successful. They added a very sensitive joystick that sits right in front of Gene, but it is so sensitive that Gene has not been able to gain good control over it. They also added an attendant control in the back of the wheelchair and this is typically how we move him around—very discouraging for Gene, as he is dependant on others to move him where he needs or wants to go. We have added a very supportive head and neck rest, as Gene is losing neck control and has a very difficult time holding his head upright. Also, they have installed special side supports for Gene to keep his upper body from falling over.
3. The ventilator and tracheotomy have been fairly manageable. There is care, maintenance, and lots of supplies, but it hasn’t been so bad. We were told to expect to spend 30 minutes a day to take care of the ventilator needs, however, 30 minutes is a great underestimate. Mostly our difficulties have been due to other health issues and immobility—the body is meant to be moved.
Again, please forgive us for not posting sooner. This has been such a hectic time, but also a very emotional time in our lives. We would very much like to share some of these thoughts with you soon. Until then, consider this…"I tell you the truth, when you were younger you dressed yourself and went where you wanted; but when you are old you will stretch out your hands, and someone else will dress you and lead you where you do not want to go"...God has said, "Never will I leave you; never will I forsake you." John 21:18 & Hebrews 13:5.
With Love,
Michele and Gene
