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  • Hi, Okie2 I am new at this My doctor want me to get a trach, I been researching and I want to try the trilogy, do you have one? How does it work? This disease has progressed so fast on me found out 9 months ago. If you can help me please do try to explain it to me, what is best? Ruby
    Hi! How are you getting along? My dad's progression seems to have slow down a little. But, he is confined to a wheelchair most of the time. He can walk short distances with this walker and someone holding onto his gait belt. He loves Netflix and watches alot of movies on it to pass the time. Take care, Kim
    Hi there. I hope you are doing ok. I haven't been on here in a while but was glad to see that you had responded to my earlier message. My dad has been declining very rapidly and we are scrambling trying to figure everything out and still provide him the care he needs. We are currently thinking about hiring a private duty caregiver to come into the home on a daily basis. Do you have any advice or recommendations about where to begin this process? Thank you so much for taking the time to reply. I can't imagine how difficult it must be for you with this diagnosis. You're in my thoughts and prayers.

    Hi! How are things going for you lately? My dad is doing so-so I'd say. With this disease its hard to gauge. He is still able to talk and eat on his own. He can take steps but has to have someone holding on his gait belt and use a walker. He is in good spirits most of the time. He kills the time by watching alot of movies on Netflix. Hope you are doing okay. You are in my prayers. Kim
    Hi, Okie- It's been awhile; not to be so personal but did you ever get your "bowel issues" straightened out? We talked about that last June. We make 2 steps forward then 1 step back- very discouraging.
    Hope you are as well as can be expected. Marianne
    Hi Okie 2, I just registered to the forum and live in Oklahoma. My dad was diagnosed in January and I have been exploring the resources available ever since. I live in Tahlequah and he and my mom live in Catoosa. He hasn't lost mobility just yet, but has very little motor skills left and also has a form of dementia coupled with the disease. His biggest difficulty is speaking so I was hoping to be able to get some input from others' experiences about anything we might be able to do to aide his frustration with communication. Because of the motor skill problems he can't write or text well, so we are sort of at a loss. I'm glad to be connected now to what seems to be a very supportive and helpful group. I will be trying to get my mom to join this weekend. Any advice or words of wisdom is welcome.
    Hi! Haven't heard from you in awhile. How are you getting along? My dad is using a bi-pap now just at night when he's sleeping. He is sleeping 100% better and has more energy now during the day. My dad has a tendency to be claustrophic but handles the bi-pap well. Take care of yourself and drop a line when you have time. Kim
    You are posting on your own visitor site instead of the person your writing too. So, they might not see your messages you send them. Kim
    Hi! How are things going for you? My dad is staying pretty stable at the moment. He uses a bi-pap just at night and he sleeps 100% better. His favorite thing to do right now since he's not very mobile is to go to the movie theatres. He goes to about every movie that comes out. My mom and dad used to own movie theatres in our small town when I was growing up. It was great. Take Care and drop me a note when you have time. Kim
    I am glad he gets to come see you. The vets should really be able to help in many ways. Good luck. I am doing well, trying to stay cool and still get out and enjoy our yard.
    Hi Okie,
    How are things going with you lately. My dad just recently had his second appointment with a ALS specialist in Dallas and he confirmed that dad does have ALS. My dad is a veteran and is checking on coverage for Ritulek. He is also going to be participating in some clincal trial will soon. He is coming up this coming up Monday, July 9th for around twelve days. I'm so hapy since I haven't seen him since Memorial weekend. Dad wants to move home for good so we are going to all work together as a family and see what can be worked out. Just taking it one day at a time. Take care and drop a line anytime. Kim
    Hi! My name is Kim and I joined this site because my father was recently diagnosed with ALS. He will be seeing a ALS specialist for the first time this coming up Tuesday, the 12th in Dallas. He is currently staying with my sister since our small town doesn't have any neurologists. My husband and I will be married 19 years this September. We have three children. Our twins (boy/girl) will turn 15 in September and our youngest son is 8. My mother passed away 15 years ago of colon cancer two months before I had the twins. Kim
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