Just want to wish you a merry Christmas and happy new year...You are an inspiration to me and so many here!
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Tillie
I may not have time later so I want to wish you and your lovely family a Merry Christmas and Happy New Year. You are a treasure.
Hi Tillie,
Thank you for checking our my page. I know I am new here, but sometimes talking to new people can be helpful too and I am here to help anyway that I can. Good luck to you, and happy holidays.
Hi Tillie
Just wanted you to know you have been in my heart and in my prayers. I wish I could do more. I will listen anytime you need me.
Hi Tillie,
Just wanted to stop by and wish you Merry Christmas. I will be working Christmas day at the switchboard at the hospital from noon-6pm. But, Brian and I are having Christmas with the kids and my aunt on Christmas Eve. Plus, I'll go over there in the morning before work and later in the evening on Christmas. I'm hoping to go see my dad in January but I'm still working on the arrangements yet. Take care, KimI came to your page because my heart is breaking and I think you will know my pain. I met the love of my life and soul mate about 3 months ago. He is a year into bulbar ALS. He is failing so very fast. And for a host of other reasons, I am 500 miles away from him and can only be there for about 12 days at a time once a month. He is now in the phase where he is having significant problems speaking. Our marathon phone sessions have now become non-existent. He is now shutting down and shutting me out. And nothing I can do seems to reach him. I question God and how can he have brought us together and then so quickly take him away from me. And then I realize, I know what he is doing, he is trying to save me from what is ahead and that makes me even more devastated.
I dont know my purpose in writing to you, other than finding someone who knows significant grief. I have never been so happy and then so sad in my entire life. I have never cried this much ever.
Hi Tillie,
Happy Thanksgiving ! I'm working and of all things to eat for Thanksgiving I'm eating popcorn that someone brought in for us. lol I rather it were pumpkin pie but I'm pretending. Going to go out to Wal-mart with my daughter to pick up a video game for my son that is on sale. I'm crazy but I like to see all the chaos with all the shoppers. Take care, Kim
Nausea eh!? Try less and slower. It took me a long time to get comfortable with the rate...can only handle 1-1.5cups at a time. Things have been busy here. How 'bout you?
Hi Tillie, haven't talked to you in a while and hope you are ok. I know it is getting tougher for you. You have a good attitude about the peg--I think you will be very successful. it really helps pals keep their weight on.
How are you doing?
Hi Tillie,
Sorry to hear about having to get the Peg tube. But, from I read the PALS on here seem to do really well on it. My mom had some type of feeding tube for a short time when she had colon cancer. She used to joke" Don't talk to me I'm try to eat." lol There is alot of information on here about them.
I've been working alot lately at my job. Seems its one bill after another. Plus, I'm trying to help with the car insurance bills for the twins who just got their license. My soon to be ex-husband just had both the refrigerator and the dishwasher go out on him. They said its not worth repairing them. I'm trying not to drain him with expenses because I don't want the kids not to be able to do things because of it.
My dad is going to be participating in a clinical trial in a few weeks. They wanted the flu shot to be in his system for awhile first. Take care, KimHi Tillie. I'm Nancy, AKA ECpara. I think we can share our experiences with our husbands, both having Bulbar Onset ALS. Tom is still very mobile and does not have the emotional liability. He is unable to talk and uses his PEG for about 95% of his nutrition - he'll "eat" a tablespoon of minced food for the pleasure of tasting, but it is hard. His day to day survival seems to be concentrated on clearing his throat of phlegm and saliva. We go to Mayo in 2 weeks to see if he's a candidate for a research trial for "acthar (sp?)". We will also be looking into Botox injections and/or radiation to reduce the saliva. As his swallowing gets worse, we'll probably look into a suction machine as well. No bi-pap yet, but I do think his breathing is a little weaker. The Mayo appt will shed light. If you have time, drop me a line and let me know how similar your husband's ALS is. What a journey we're all on. God Bless, NancyDoing well! The drug Neudexta has really helped with my emotional liability. I need to take 2 per day. But, when I get tired it gets much worse. I have a lot of uncontrolled laughing after 7:00 p.m. And I miss the talking at dinner - we have stopped talking while I'm eating as we never know what will 'strike me' as hilarious.
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