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  • HI Patty, I just read where you stopped taking rilutek. How long ago? Any differences? How long did you take it for? Thank you in advance!
    Hi Patty,
    Good to see you on. It looks like we are going to get a legal separation at this point instead of a divorce. It's been a year now exactly since he filed. I got to get a new lawyer since mine accepted another position. Luckily, I wasn't too far into and got some money back. I saw my dad for a few days in Texas the first of the year. He is doing decent considering this horrible disease. My brother and sister take him out alot to the movies, to church, out to eat, and to their kids ballgames when the weather cooperates. The assistant living facility that he stays at is beautiful but extremely expensive. Thankfully, the VA does pick up a little of it. Love to you and your family, Kim
    Just dropped in to say Hi. How is your family doing? I saw where you were on a few days ago. I'm doing alright considering I have a pending divorce to deal with. I am hoping things work out but it doesn't look real good at the moment. I'm still praying though.
    My dad is now living in Texas at a assistant living center. We couldn't find adequate caretakers for him in our small town. My brother and sister take him out pretty often to the movies, out to eat, and to their kids ballgames. I miss him so much. Take care, Kim
    Hi Patty,
    I'm doing ok. I have been going to alot of baseball games of our two boys lately. Matthew will turn 16 in September and Eric will be 10 in November. My dad who has ALS lives in the same subdivision as the park where they play so his caretaker takes him to most of the games. Dad just loves it. Otherwise, dad just spends most of his day watching movies on Netflix. My brother got it for him and he really enjoys it. My parents owned movie theatres in our town while I was growing up so dad is a real movie buff. Dad is getting his first power wheelchair in a few days through the VA. He is excited because he'll be able to go out in the yard easier for fresh air. Take care of yourself. Kim
    I am so sorry to hear about your mother Patty. I totally understand your pain though having lost my own mother 15 /12 years ago to cancer. May your beautiful memories sustain you. Love, Kim
    Thinking of you. Wish I could do more for you and your family. You are in my prayers. Sending you a virtual hug. Love, Kim
    How is your mom doing? I am sorry to hear she is not doing well. Our Hospice team up here was wonderful to my mom and to our family. They were always there for us 24/7, that was a huge comfort especially towards the end they helped guide us to make mom as comfortable as possible. I'll be thinking of you.
    Thank you for responding to my post. I'm so sorry to hear about your mom. I will keep her and you in my prayers.
    Sorry to hear that your mom had bronchitis that had to take alot out of her. My dad is coming home tonite but I won't see him until tomorrow since he's worn out from the long drive. I didn't have the best Thanksgiving since I worked it and then came down with strep throat. I feel 100% better now. We are going to be doing alot of extra hand-washing now that dad is home. Take care and its always good to hear from you. Hugs, Kim
    I saw one of your posts on a board and wanted to tell you that my mom seems similar to yours. She has started early this year (February) with slurred speech. It got worse and then the swallowing/chocking started. She was sent the a neurologist by her ENT and we are now waiting for our 2nd opinion appointment in St. Louis for the diagnosis of ALS. My mom doesn't have significant symptoms in any other area besides the bulbar region. She does complain of shortness of breath because of the effort it takes to talk. At this point, does your mom have use of her limbs, or has the disease progressed? What a horrible disease... I am so lost right now. :(
    Happy Thanksgiving to you! My dad will be coming home this coming up Wednesday or Thursday to stay at his home for at least awhile. I haven't seen him since Labor day weekend so I'm anxious to see him. Dad is doing so-so. He is now losing the strength in his arms and his fingers are curved under so he has very limited use of them. He has trouble holding his cell phone. I'm going to see if we can come up with something else he can use easier. Take care and drop me a line when you have time. Hugs, Kim
    Hi! Hope things are going as well as can be considering this horrible disease. My dad is planning on coming home this month for at least awhile. How long he stays will depend on how much the disease continues to progress. He has a family friend who has agreed to be his full-time caregiver. This friend already is currently living in my dad's home and helping with its upkeep. That way dad's home isn't left empty. I just took my daughter last weekend to see Justin Bieber in concert in St. Louis as a late birthday present. She was in heaven. I never felt so old in my life. lol Take care and write when you have time. Hugs, Kim
    Hi! Our youngest son (Eric almost 9) just got back from visiting my dad in Dallas. He had a great time. He felt important helping push grandpa in his wheelchair. My dad seems to be currently at a standstill in his progression. Which was moving pretty fast at first. He is waiting to hear rather or not he will get to participate in a clinical trial. He was supposed to find out this week but the doctors said it will now be another 10 days. He does take Ritulek but I'm not sure if it helps or not. I strongly recommend a bi-pap if your mom doesn't use on already. My dad uses his just at night and it really helps him. He has a tendency to be claustrophic but tolerates this mask well. Take care, Kim
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