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Roxanne Kusske replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 8 months, 3 weeks ago

I too enjoyed reading Rick’s column’s/stories. I will miss reading them. Thoughts are with his family.
Susan and Roxanne Kusske are now friends 10 months, 3 weeks ago
Roxanne Kusske replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 year, 1 month ago

Congratulations!
Roxanne Kusske and Fran Finney are now friends 1 year, 2 months ago
Roxanne Kusske replied to the topic Who motivates you to take care of yourself? in the forum A Forum for ALS Caregivers 1 year, 7 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]
Roxanne Kusske and Kevin are now friends 1 year, 8 months ago
Roxanne Kusske replied to the topic Hey Caregivers – lets check in in the forum A Forum for ALS Caregivers 1 year, 10 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.
Roxanne Kusske replied to the topic Hey Caregivers – lets check in in the forum A Forum for ALS Caregivers 1 year, 10 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]
- Amanda replied 1 year, 10 months ago
  
  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]
Roxanne Kusske replied to the topic Caregivers Check in in the forum A Forum for ALS Caregivers 2 years, 2 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]
Roxanne Kusske replied to the topic Professionals and Empathy in the forum Living With ALS 2 years, 5 months ago

Our Neurologist and also the ALS specialist doctor’s were very empathetic when discussing my husband’s ALS diagnosis.
Dagmar Munn and Roxanne Kusske are now friends 2 years, 6 months ago
Roxanne Kusske replied to the topic Bathing in the forum A Forum for ALS Caregivers 2 years, 6 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]
Amanda and Roxanne Kusske are now friends 2 years, 10 months ago
Roxanne Kusske changed their profile picture 2 years, 10 months ago
Kathryn F. Kennedy and Roxanne Kusske are now friends 3 years, 1 month ago
Roxanne Kusske posted a new activity comment 3 years, 5 months ago

We live in Mayer, MN.

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- Dagmar Munn replied 3 years, 5 months ago
  
  Roxanne – I agree with Ashley that you can vent anytime here 🙂 We are a support community of like-minded folks. I also agree that attitude is important – – but it does take time to get to that optimistic state of mind – – especially so soon after being diagnosed. I look back, and realize that hearing this diagnosis is really a ‘traumatic event.’…[Read more]
  - Dagmar Munn replied 3 years, 5 months ago
    
    Ashley – – I am sorry, but I must speak up and mention that the Deanna Protocol is a controversial diet regimen and has had zero human studies (all have been on mice). It is not recommended for ALS patients. You can choose to follow it and purchase the “product” – – but it is not appropriate to promote to others without them knowing it’s lack of…[Read more]
Roxanne Kusske posted a new activity comment 3 years, 5 months ago

He did express interest in doing a trial, but we need to get information on where and when as long as it’s close to home, and then get transportation lined up as well. So I’ll talk to him about that soon and see how he feels. Thanks for your help.

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Roxanne Kusske posted a new activity comment 3 years, 5 months ago

Well, he is a very stubborn man, and does not have a very positive attitude; more on the side of “it is what it is”, and “what will be will be”. And definitely will not try a supplement program. But he doesn’t feel sorry for himself, and actually feels lucky to have lived as long as he has, as apposed to young children that get cancer and die at…[Read more]

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Roxanne Kusske replied to the topic Diet and Supplements in the forum Living With ALS 3 years, 5 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.
Roxanne Kusske posted a new activity comment 3 years, 5 months ago

But have you done anything specific to be able to still walk, breath and eat? All I’ve seen and read is how quickly it takes over all of those things. I know it effects everyone differently, but my husband is convinced he’s going to die tomorrow! Just because he feels crappy most of the time. He was only just diagnosed in August of this year,…[Read more]

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- Amanda replied 3 years, 5 months ago
  
  Roxanne,
  This is a safe place to vent. You are welcomed to vent, share you fears , and ask all the questions you want. The ALS forum members are absolutely wonderful and very supportive! I am glad that you have joined. Please continue to ask questions and you are welcomed to post discussion topics too.
  
  Amanda
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