pscheffel
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  • Hi, thanks for your note. I'm afraid I don't have details on how my two bulbar friends died. Certainly aspiration is a concern. I can still drink, small sips carefully, but cant chew because my tongue is useless. Good luck with your mom, and thanks (from another mom) for being there for her!
    Thank you so much for your messages of gratitude, I really feel them! You have a beautiful heart!
    I am sorry your doctor doesn't understand the emotions you are going thru. ridiculous not to give you something to help! I would take that as a sign you need a new doc...I take a very low dose of an anti depressant and it helps tremendously. anticipatory grief is very hard to deal with.
    Thinking of you and sending you a hug. I was off work for the past couple days. Our youngest son Eric who is 8 had strep throat. He didn't act like it bothered him too much though. My dad just had his birthday on Sept. 11th. I thought it was really sweet that 10 of his neighbors from here took the time to send him a card in Dallas where he's staying for the time being. Stay strong and write me anytime. Kim
    Hope your mom is having a good week. You and I are going through the same thing with our parents except its my dad with the ALS instead. But, my mom passed away 15 years ago after a 5 year battle with breast and colon cancer. Keep your faith in God even on your worst days. God, didn't cure my mother but he made his presence known many times during her illness. Her pain was controlled etc. Write to me when you have time and tell me more about yourself and your family. Sending you a big hug for courage. Kim
    Just wanted to stop by and give you a hug. I'm so very sorry about your mom. Your pictures in the album show her vibrant personality. You are such a wonderful daughter. Take care. CJ
    pscheffel, thank you :) I am so glad to have this site. I am actually at work, but can't help checking for more information. I was so inspired by that video yesterday. You know, my mom has been complaining for atleast over a year about her neck and feeling like she has a pinched nerve. What if that is causing all this with her? I know I probably sound like I'm in denial, but I just want to cling to any hope. I just cannot wait to get her in for a thorough exam by the ALS specialists... then it will be concrete in my mind. This morning I started explaining to my daughter about grandma. I want to give her a little information. I know I have not been myself and I feel she needs to know a little bit on why. Plus, with grandma coming up here, Kimmy will take special notice of her. My mom needs that right now. My mom is a great person it's been a rough road with her. Thanks for being there. I hope you have a nice day!
    pscheffel,
    Thankyou so much for your message to me. When we went in for the test Wednesday and they told us, I was still in shock, denial maybe. I held it together until we got back to her house and I had to call family members that were expecting to know what we found out. Even then, trying to tell my husband who was here in Hancock with our kids, that's when it hit me. I want to try my hardest to be strong for my mom. But even today, I had to go shopping for paper towel and shampoo and I feel like I am in a fog. I've always seen things that I've thought to myself "mom would like that", and even today, same thing... and it occurred to me that one day she will not be here and yet I know I will always think of her when I see things she would like.
    Honestly, I feel like she is not strong enough to fight this and that is what scares me. On a good note, my sister in law is going to bring her here to my house next weekend. :O) I cannot wait to show her this site.
    hey sorry i haven't gotten back to you, my mom isn't doing too good and won't make it past summer. so been spending alot of time w her. And as of yesterday she sorta of confused don't know if its the new patch, lack of fluids or what. The nurse is going to be there today and my sister is there so just waiting on her to call back to see what is happening but I think it doesn't look good...For weeks now she can barely talk and eat. She no longer takes some of her meds and uses a sponge to drink water. As for the baby he is good and keeping me busy:) In the mist we are currently trying to sell our house too! How are you? Hope things are better w you than me!
    Like you I cry alot so I try not to think about what my mom will be missing but we are so close that I don't know what will happen when she is gone.My kids and I spend alot of time w my mom and grandma especially when its summer. We would go places.....It seems she gets worse by weeks and not months now. I hate even to think about her dying. I try to treat her as normal as I can. I told my girls that she will one day die and that they should treat her like they would otherwise, that it is the disease and not her. My oldest just said I wish we could do the stuff we use to do w her and it breaks my heart because theres nothing like going to "grandma's". Feel free to message me too! We can get through this together :)
    I'm glad to find you too. Wish it was under better circumstances. Yes it is really unfair. My mom lost her dad almost 2 yrs ago and she wanted to start taking family trips w my sister and I and our families. We planned on doing so many things and my girls use to spend alot of time w my mom and she would take them everywhere. My mom started having symtoms Jan 11, it affected only her right side. She noticed her arm, hand, leg got weak and started falling. Also her speech and swallowing. She got diagnosed at the end of Aug 11. For the next couple months she remained the same but then she notice around Nov she was getting worse. Then it was her appoint in Feb that yes she indeed was getting alot worse. March was filled w various appoints. She can barely walk and is pretty much wheelchair bound, her speech has gotten alot worse where now I can barely understand her but she is getting a voice box soon. And her swallowing has gotten worse too.
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