ALS Update
Hello all. Just wanted to write and give you an update on dad. The past few months have been pretty difficult for him in terms of his health. The greatest loss seems to be communication. He's had a communication device for some months now but didn't use it a whole lot until this year when he started losing the ability to speak more and more.
The device is sort of like a miniature laptop with keyboard that is attached to a speaker so that whatever he types in is spoken over the speaker. The machine has several different voices but the one dad likes best is Paul. So, we call the machine "Paul" and poke great fun at Paul's expense.
I'm sure some of you have heard the various stories about Paul's naughty behavior but I will retell one here for you now. One evening several months ago when dad was still taking food by mouth, dad asked for a "Drink." He discovered very quickly that with Paul, he could ask for the same thing repeatedly with a single key stroke. So, to be a smart alec, he said Drink, Drink, Drink, Drink, Drink over and over until my mom was ready to smack him. Of course, the entire time, he had an evil little grin on his face. So, to retaliate, mom fixed a big tasty chip with chile con queso on it and started to put it up to dad's mouth. Just when he opened it up to take the chip, Mom snarfed it down! Mom and "Paul" go round and round like this, entertaining the rest of us. Paul has even been known to use oilfield language from time to time when he's not getting his way. ;-p
For awhile, it seemed that some days dad would have a voice and some days he would not. Lately though, he rarely has a voice. I don't think I've heard him speak in a week or so. When he tries with great effort to put out a sound, he gets barely a indecipherable whisper or nothing at all. I know by the look on his face that this is very frustrating for him. He's always been a man of many words and this loss is no small one.
He also has lost quite a bit of use of his hands, making using the communication device difficult as well. He really has to work at it to be able to get his hands up to the keyboard and push the right keys to say what he wants to say. Still, he sticks with it and we are able to communicate in this way. We will be looking very soon into some sort of eye-gaze communication device for him.
Dad is under hospice now and has a nurse's helper that comes out 3 times a week to bathe, shave, dress, and otherwise groom him. She's not at the house very long when she comes but I think it's good for mom to get the break and good for dad to see some different faces. He has a nurse that comes out once a week too to check on his vitals and make sure that he's on track.
He no longer eats food by mouth. The effort is just too great. Mom feeds him through a tube in his belly several times per day and he is able to maintain nutrition and weight in this way. He likes to joke that his cans of Jevity are spaghetti and meatballs. Mom crushes his meds and gives them to him through the tube as well. Pretty much the only thing he takes by mouth is gum and hard candy and beverages.
Dad is still using the bipap at night for his breathing. A clinic check with his ALS doctor this week indicated that he has lost a little more vital breathing capacity so the doctor has recommended that he use the bipap more than just at night. We are working at getting him something a little more portable, possibly something that will attach to his wheelchair for daytime use.
Dad gets out whenever we do and likes to go shopping or do things with the family. He uses his wheelchair like a champ and can turn that puppy on a dime. I fondly call his chair Turbo, at least when it's not aiming at my toes. We like to take the boys down to the community park as well as Sea World and soccer games, etc. Anywhere we go, Turbo and dad can go.
About once a week, he walks to the car instead of using his chair and we go over to his favorite massage lady, Trinity. She works on his neck, arms, back, and shoulders and he seems to really benefit both from the work and the activity itself. Dad also looks forward to church each week but we've learned that communion is quite a chore. I took too large a hunk of bread several weeks ago and had a moment of panic thinking we were going to have to do the Heimlich maneuver!
These days, I think dad's most favorite thing to do is to hold his new grand daughter, Lillie, who is now 5 weeks old. Jillan brings her up to see the family a couple times a week. Since dad can't really hold her in his arms, he has become a pro at holding his knees together while she lays between them. She loves this special spot with her Popi and they both look forward to their time together.
Hopefully, this update finds you all doing well. We continue to think of you and love to hear from you all from time to time. Please continue to keep us in your prayers. Have a blessed Easter!
Jennika Cook
The device is sort of like a miniature laptop with keyboard that is attached to a speaker so that whatever he types in is spoken over the speaker. The machine has several different voices but the one dad likes best is Paul. So, we call the machine "Paul" and poke great fun at Paul's expense.
I'm sure some of you have heard the various stories about Paul's naughty behavior but I will retell one here for you now. One evening several months ago when dad was still taking food by mouth, dad asked for a "Drink." He discovered very quickly that with Paul, he could ask for the same thing repeatedly with a single key stroke. So, to be a smart alec, he said Drink, Drink, Drink, Drink, Drink over and over until my mom was ready to smack him. Of course, the entire time, he had an evil little grin on his face. So, to retaliate, mom fixed a big tasty chip with chile con queso on it and started to put it up to dad's mouth. Just when he opened it up to take the chip, Mom snarfed it down! Mom and "Paul" go round and round like this, entertaining the rest of us. Paul has even been known to use oilfield language from time to time when he's not getting his way. ;-p
For awhile, it seemed that some days dad would have a voice and some days he would not. Lately though, he rarely has a voice. I don't think I've heard him speak in a week or so. When he tries with great effort to put out a sound, he gets barely a indecipherable whisper or nothing at all. I know by the look on his face that this is very frustrating for him. He's always been a man of many words and this loss is no small one.
He also has lost quite a bit of use of his hands, making using the communication device difficult as well. He really has to work at it to be able to get his hands up to the keyboard and push the right keys to say what he wants to say. Still, he sticks with it and we are able to communicate in this way. We will be looking very soon into some sort of eye-gaze communication device for him.
Dad is under hospice now and has a nurse's helper that comes out 3 times a week to bathe, shave, dress, and otherwise groom him. She's not at the house very long when she comes but I think it's good for mom to get the break and good for dad to see some different faces. He has a nurse that comes out once a week too to check on his vitals and make sure that he's on track.
He no longer eats food by mouth. The effort is just too great. Mom feeds him through a tube in his belly several times per day and he is able to maintain nutrition and weight in this way. He likes to joke that his cans of Jevity are spaghetti and meatballs. Mom crushes his meds and gives them to him through the tube as well. Pretty much the only thing he takes by mouth is gum and hard candy and beverages.
Dad is still using the bipap at night for his breathing. A clinic check with his ALS doctor this week indicated that he has lost a little more vital breathing capacity so the doctor has recommended that he use the bipap more than just at night. We are working at getting him something a little more portable, possibly something that will attach to his wheelchair for daytime use.
Dad gets out whenever we do and likes to go shopping or do things with the family. He uses his wheelchair like a champ and can turn that puppy on a dime. I fondly call his chair Turbo, at least when it's not aiming at my toes. We like to take the boys down to the community park as well as Sea World and soccer games, etc. Anywhere we go, Turbo and dad can go.
About once a week, he walks to the car instead of using his chair and we go over to his favorite massage lady, Trinity. She works on his neck, arms, back, and shoulders and he seems to really benefit both from the work and the activity itself. Dad also looks forward to church each week but we've learned that communion is quite a chore. I took too large a hunk of bread several weeks ago and had a moment of panic thinking we were going to have to do the Heimlich maneuver!
These days, I think dad's most favorite thing to do is to hold his new grand daughter, Lillie, who is now 5 weeks old. Jillan brings her up to see the family a couple times a week. Since dad can't really hold her in his arms, he has become a pro at holding his knees together while she lays between them. She loves this special spot with her Popi and they both look forward to their time together.
Hopefully, this update finds you all doing well. We continue to think of you and love to hear from you all from time to time. Please continue to keep us in your prayers. Have a blessed Easter!
Jennika Cook
