WellsRuby

Wish I could help you--I would bet there are back braces, but I dont know how comfortable they would be. I have heard of people using neck braces, but that is only when they have the drooping head, not the whole back. My husband is sort of hunched over which I think is common. He is always in a recline position unless he is eating (sits forward in his pwc and then back). I notice in his shower chair that he hunches and has very little control for leaning side to side. do you have a recliner or big office chair that he can sit in to help hold his head and shoulders up while he eats and uses the computer? I would think the hunching forward also makes it harder to breathe.

Hello fellow Texan. I live in Lubbock. I will be going to the Dallas clinic next for a final diagnosis.

Tracy

Hi Ruby,
How are things going for you? I'm ok but missing my dad who is now living in Dallas. He had to move from his home here in Central Illinois because we couldn't find any good caretakers for him here. I am probally going to go visit him around Thanksgiving or Christmas time. He is doing decent considering he can't do much. My brother and sister take him out to eat, to the movies, church, and to their kids sporting events. But, he needs help showering, dressing, and everything else basically. Take care, Kim

hope things are better for you Today!

Hi! It has been awhile! I had my left knee replaced three weeks ago and I'm in the middle of recovery. I am ahead of the curve in terms of mobility... I hate not being able to go and do when I want. The floors are done and I got the sectional for the family room; waiting on the living room furniture to put the house back together. Marvelous Maddie turns two this month and she knows her colors and is talking up a storm.
How are you doing??? How is retirement?
Hugs,
Jen

Hi Ruby, Thanks for your kind words. I think you are doing a good job for your husband. if He refuses a PWC for now, is he open to a scooter? that was the lifesaver for us--they are very accepted in society and seems like everyone uses one and there is no stigma with them. we bought ours new for about $500 online and resold it after we didn't need it for $300. Remind him though, it can take 3-4 months for the PWC to arrive, and you don't have to use it the day it gets here--you can wait or only use it as needed. The ALS clinic was the one who said it was time to at least order it for us.

Feel free to ask any questions Dear One! I'll try to answer as best i can. It's my pleasure! We're all in this together. Hugs to you and yours!

I get uncomfortable right before I go to bed. In fact that's why we go to bed. I take 1/3 of a tab of Xanax and typically sleep most of the night only waking to be turned once between 4:00 and 5:00. Our bed is very comfortable though. Maybe you need a new mattress? If his breathing is good then a bipap wouldn't help. Hmm...

Hi Ruby,
Just dropped by to wish you a Happy Easter. Take care, Kim

Hi! Feels like I've been gone a long time. We had a memorial service as he wanted to be cremated. There were about 100 people present and one of his friends was the officiant. He did a great job, almost cried himself! Several people, including our daughter stood up to talk about Rog and their memories. Many came back to the house after the service. My mom, two of my sisters and my brother came for the service and one of my sisters repaired all the dings and dents in the walls from the pwc. My best friend and our caregiver both cleaned out and separated all the ALS stuff so I wouldn't have to do that. Hospice made his final days easier and helped with contacting the funeral home.
I am so at peace and I have no regrets! We said everything we needed to say and I honored my promise to keep him at home. He and Melissa made peace which also eased my heartache. He is whole again in God's arms and I'm so thankful.
Jen

Hi Ruby,
How are things going for you? We are anxiously waiting for spring to actually get here. Otherwise, you can come to my home for a dinner of groundhog stew. lol Dad is hanging in there. He isn't good but could be doing a whole lot worse too. He is hard to gauge with this horendous disease. Dad spends alot of time watching movies on Netflix which my brother got for him. Our oldest son likes to go over and watch sports on tv with him as well.
It looks like my husband and I will still be getting a divorce which hurts me terribly. But, we are treating each other with much respect and still love each other. I keep praying that another option comes up. We will probally try some counseling at some point. Just have to find someone that we both can connect with. I just try to make the best of each day and count the blessing that I do have.
Take care of yourself. You are in my prayers, Kim

Some day when you are up to it, I would love to hear about Rog's service. Let me know how you are doing.

Get something light and easy to handle. See if insurance will cover a dynavox with eyegaze. Start planning now if you can...

Rog's service was beautiful and full of joy!

Jen

I've found your true friends remain your friends. I'm still hearing from clients and I retired one year ago in December! People will fall by the wayside when things get rough but your true friends will stay by you. Don't be afraid to ask for help. You'd help them if the situation were reversed, right? Don't forget about taking care of you Sweets. A massage, shopping or lunch with friends is in order from time to time. You're a very important piece to these works. Love and hugs to you!!

Hooray for you! Can I ask that you do one thing, please? Don't wait too long to get help like I did. The moment you start feeling like you are losing yourself, get someone in so you can be free for a bit. I'm struggling to find my way back as Rog's condition worsened really quickly and I got swallowed up. I'm glad I retired when I did! I'm just not superwoman! Travel and enjoy your time together!

Hugs,
Jen