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Roxanne Kusske replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 1 month, 1 week ago
I too enjoyed reading Rick’s column’s/stories. I will miss reading them. Thoughts are with his family.
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Roxanne Kusske replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 5 months, 3 weeks ago
Congratulations!
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Roxanne Kusske and
Fran Finney are now friends 7 months ago
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Roxanne Kusske replied to the topic Who motivates you to take care of yourself? in the forum A Forum for ALS Caregivers 12 months ago
I made a “she” shed out of my garage! Which was no easy task as my husband did body work and painting out there, but I managed with the help of family and friends. My husband sleeps in his recliner in the living room, so I made our bedroom my own! I spend my “free” time decorating, arranging, re-arranging, and then enjoy the spaces, all in be…[Read more]
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Roxanne Kusske and
Kevin are now friends 1 year, 1 month ago
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Roxanne Kusske replied to the topic Hey Caregivers – lets check in in the forum A Forum for ALS Caregivers 1 year, 3 months ago
Thanks ladies! Sometimes I just want to throw my arms up and say “I’m done”! But I could never do that to him. So it’s good to have more help now.
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Roxanne Kusske replied to the topic Hey Caregivers – lets check in in the forum A Forum for ALS Caregivers 1 year, 3 months ago
Just started my husband on Hospice yesterday. He isn’t close to dying yet, although I don’t know for sure; but we need help and they are there in any way we need. He refuses any type of life saving options, i.e. feeding tube, oxegyn, etc. So I get to just watch him die a most unpleasant death. Fortunately Hospice will be there to make him com…[Read more]
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Roxanne,
My father was a lot like your husband. He refused any type of treatment. Heck, he just stopped going to the doctors. We had Hospice service for about a month and a half. They were amazing, absolutely amazing. My heart aches for you. I wish I could offer something that would help. Watching someone you love deteriorate from ALS is…[Read more]
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Roxanne Kusske replied to the topic Caregivers Check in in the forum A Forum for ALS Caregivers 1 year, 7 months ago
My husband was diagnosed in August of 2019. He made his 55th birthday and Christmas, but he doesn’t think he’ll make it through the winter. I think he’ll be around for at least another year, but he keeps getting weaker and weaker. He refuses to have a feeding tube or breathing machine, and just wants to go naturally. He doesn’t have a need for…[Read more]
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Roxanne Kusske replied to the topic Professionals and Empathy in the forum Living With ALS 1 year, 10 months ago
Our Neurologist and also the ALS specialist doctor’s were very empathetic when discussing my husband’s ALS diagnosis.
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Roxanne Kusske replied to the topic Bathing in the forum A Forum for ALS Caregivers 1 year, 11 months ago
We recently took out our tub and shower and built a walk in shower, and will have a little removable ramp to go over the lip and push my husband’s commode/shower wheel chair into the shower. Just need to re-paint the walls and ceiling above the tiling, and then we can use it. I’m so excited that he finally, after several months, gets to take a s…[Read more]
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Roxanne Kusske changed their profile picture 2 years, 3 months ago
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Roxanne Kusske replied to the topic Diet and Supplements in the forum Living With ALS 2 years, 9 months ago
My husband took the Riluzole for about 2 weeks, and was constantly tired and nauseous, so we decided it wasn’t worth that, to only live an extra couple months, after the disease is in it’s late stages.
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Roxanne Kusske became a registered member 2 years, 9 months ago
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Hello Roxanne, Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS; I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. The easiest way to see what is current is to…[Read more]
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Hello Roxanne and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like to post but would like some a…[Read more]
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