Magpuff

I saw your light on and decided to drop by and say Hi! Hope you are doing ok. My dad is doing fairly well. The progression seems to have slowed down a little bit. Its kind of hard to gauge with this. He's not in great shape but could also be a whole lot worse. Dad just started in a clinical trial this week of a drug called Acthar. He will be getting injections twice a week. There are only 40 people in the U.S. who will be in this trial. If my dad was younger and didn't already have some heart issues I think he would of tried the stem cell route. Take care, Kim

Hi Maggie,
How are you doing? I'm keeping busy with the kids and work. The twins (Matthew, Julie) are sophomores and our youngest son Eric is in 4th grade. The twins will turn 16 on the 19th and get their licenses. I miss my dad who is now living in Dallas near my brother and sister. We couldn't find any good caretakers here. He is staying at a assistant living type facility for now. He seems to be adjusting to it pretty good. He is going to give it a chance for awhile and if he doesn't like it he will move to my brother's house and they will get him full-time care there. Take care, Kim

Wishing you a Happy Easter. Take care, Kim

Hi! How are things going for you. I'm anxious for spring to get here so we can get my dad out more for some fresh air. He's doing so-so. It's so hard to gauge with this darn disease. He has actually gained a few pounds and has a good appetite. He eats still on his own but has to take his time and pay attention to what he's doing. His speech and breathing are pretty good most of the time. He sometimes will get a little hoarse. Dad can take a few steps but only with a walker and someone standing behind him holding on to his gait belt. Dad spends alot of time watching movies on Netflix. Our oldest son has been going over quite a bit to watch college basketball with him. They enjoying doing that togethere. Hope you have a Happy Easter. Take care, Kim

Hi! How are things going for you? My dad is back living at his home here in Central Illinois about a mile from me. We have a family friend who has moved in with dad and is his full-time caregiver. We also hired another caretaker that will be relief. Plus, my husband, aunt, and I are helping out as well. Our twins are freshman and are getting ready to take their first high school exams next week. It is going to be a stressful week because our son is not very motivated this year. He is having trouble adjusting to a new enviroment at a much bigger school then he's used too. Take care. You are in my prayers. Kim

Just dropped in to say Hi! Hope you are doing okay. Our youngest son who will be 9 just took his first airplane ride a couple weeks ago to fly to Dallas to visit my dad. He had a great visit. My dad's progression seems to be at a standstill. My brother/sister try to get dad out as much as possible by taking out to eat, ballgames, and to see movies which is his favorite. Dad is very thin but he has maintained his weight lately and even though it takes a long time to eat he still has a good appetite and eats on his own. He has therapy and it has really helped with his swallowing and speech. Take care, Kim

Hi! How are things going with you? My dad is staying about the same. He uses a bi-pap at night. He is still able to eat and has a good appetite. But, it takes him along time to eat and wears him out. We find out in the next week or so if he gets to participate in a clinical trial in Dallas. Praying he gets accepted. Dad enjoys getting out and going to the movie theaters. My mom and dad owned movie theatres in our town while I was growing up. It was great. Take care and drop a line when you have time. Kim

Read my current post under stories of Hope titled the Power of Prayer.

Wow, you also. I haven't read anyone posting about the biting. It sure is painful. It is mostly on the side that is paralyzed. However, I bite my entire lip at night when asleep. My mouth gets really dry also.

Yes, the inside of my mouth is full of bites. And at night it is worse because my mouth gets so dry my cheek sticks between my teeth. LOL This disease has a new twist daily, doesn't it?

I have found with this "paralysis" I am biting the inside of my lip/cheek. It's quite painful and I can't control it. Are you having this problem?

Ha, my half smiled a lot today! Hope this finds you well my friend.

Hi! Thank you for the warm welcome. Everyone on here has been so kind and helpful to me. I'm sure I'll have more questions as I go along. Do you take ritulek? My dad is seeing a ALS specialist on the 12th. The neurologist who diagnosed him didn't seem to know too much. He has a three hour appointment with the specialist and they are going to do more tests on him. Hope you are having a good week. Kim

Someone on the forum said there's a way to get ebooks to work by using voice commands that are turned off... not sure if you read on your pc or not.

Hi Magpuff, just wanted to come over and say I know what you mean about too many things to do, people coming in, etc. I just want to be left alone and do whatever I want to do! I also am sick of sitting down all the time, so make sure I am able to stand up once or twice a day and give myself a big stretch. I also love to lay down on my bed on my side, so I'm off my butt! I can't sit on the couch anymore as I can't get off of it.... too low. But if you had a daybed that was high enough, maybe you could lollygag on that for a bit each day.
Helen