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Hi JIM;
This past week and the whole month of February have and will be very busy for us so I wanted to connect and let you know we are still here. Should get Sibyl's lift/sleeper/rest Chair this week. Hoyer lift will be delivered Thursday. Home care is sending someone to give us On the job training for Hoyer. Contractor for bathroom refit here Thursday. You may know that we will be at UVA on three separate occasions in February. All this and we will be in Norfolk to learn about PWC and have appointments with Sibyl's cardiac doctor.
Trip to Chincoteague went better than expected. Big family meal on Saturday and visits by friends throughout weekend.
Still hope to have our lunch and share experiences.
Ernie
JIM. In one of your posts you mentioned my sending you a PM. Would like to do this but my mind is full of a lot other things. Can you explain how? If so, post to Newly Diagnosed under my post. Thanks.
Happy Thanksgiving. How are you and Darcy holding up now? I don't post as much anymore but I pop in every once in awhile. You both are in my thoughts and prayers. Kim
Another question, Jim. I assume Darcy is taking Baclofen? How is she able to go so many hours without a dose?
Thanks for the very informative reply, Jim! We have an adjustable bed, split king. I am starting to have a hard time moving in bed, rolling over, etc. So its time to start to look for alternatives. I'm so happy for Darcy that she can sleep for so long! I get maybe two hours at a time. Then theres the bladder issue for which I have to get up for.........
So you are still working? So is my husband. What do you do to provide care for Darcy? I am mostly alone - an aide comes in 2hr/3xwk. I have a lot of anxiety about getting out of bed by myself, so the time is fast approaching to add hours for aides.
Thanks again for your reply.
Deb
Hi Jim, I stumbled upon your convo with Mich5 about a mattress and would like more details, if you would be so kind. I have an adjustable bed with a firm foam mattress, but I still have a lot of discomfort trying to sleep. Much thanks, Deb.Hi Jim, it's been a long time. Met you in VA with the wheelchair for Darcey. Hope life is treating you both as well as can be expected. I haven't been online since I made that post. ALS has been on my mind though a lot and that brought me back here. It's kind of crazy with the ice bucket challenge because it would pop up in my Facebook news feed all the time since my mom passed and one one hand it would upset me because it hurt as a reminder but at the same time I was happy because it raised awareness. This is the only place I feel that I can say that where people will understand. I just wished my mom had been here when it happened to see it. Anyways, I'm rambling but I wanted to reach out. It's taken me a long time to get back on here. Please tell Darcey that I received her email after I gave her the wheelchair. I had planned to respond but accidentally deleted the email and couldn't find it. I wish you both well and hope to hear back when you have the chance. -Sarah
Hi Jim,
How are things going for you? We had a wonderful visit with my dad over Columbus day weekend. My dad got to see all his grandkids in one place. Which is a rarity since two are in college. He has no use of his limbs anymore. But, he can still breathe with out assistance, eats pretty well, and if he isn't overly tired his speech is pretty good yet. He's still in good spirits most of the time. He was enjoying going to my niece's volleyball games. The season just ended though. He watches alot of movies on Netflix and my brother takes him to the movies alot. Take care, Kimthank darcey for me. the constant waking is awful. we got a 3" gel infused foam topper for our adjustable bed and, when that didnt work, we tried to treat it topically and then with muscle relaxers and pain pills. nothing has worked. my chiro is wondering if its a disk problem. but, when i saw your post, i started to think 'bed' again. i didnt want 'hospital bed' but maybe its time.
my alsa doesnt have any of those mattresses in the loan closet. i just heard medicare wont pay for that mattress until AFTER you have a bedsore. were going to have to price them. :-( ill let you know if we have more questions as we shop. thanks!jim, hello! ive just started posting on the forum again, after getting my tobii. i read your post about the hospital bed and alternating mattress. what kind of pain was darcey experiencing? i have awful leg pain at night, it feels like my bones hurt. were trying to treat it, but we never thought the bed might be the issue. thx.
Hi Jim, sorry I'm really bad at this. I've just read a post of yours (can't remember in which thread or who to, maybe Paulette). You mentioned your beloved Darcey was told six months? Jim I just wanted to thank you for that post, it was truly from the heart. Sometimes I read a post for someone else, and it does so much good for me, to be enriched by the depth of compassion written not only in the words but between the lines. This was one of those posts.
Darcey is very fortunate you are her world, I'm sure she tells you that every day just by smiling at you.
God bless, Janelle x -
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