lindyazmn
Member
- Joined
- Dec 6, 2020
- Messages
- 10
- Reason
- Lost a loved one
- Diagnosis
- 05/2020
- Country
- US
- State
- AZ
- City
- Tucson
Hello everyone. I just found this forum and it's a relief to see so many of you out there. But I am sorry there are so many of us out there.
My husband was diagnosed with ALS in May, 2020 at age 61. He ran a marathon in October, 2019 and another in December, 2019. Watching the steady march of this horrific disease is devastating. And I know you all know of what I speak. We work hard to live in the moment and find joy in simple pleasures every single day. And there is a lot to be grateful for. AND I also feel overwhelmed under the crush of grief and physical strain, as I am also continuing to work my paid job. We are currently in Tucson and have begun care with Dr. Ladha at Barrow Neurological Institute in Phoenix. Dr. Ladha and his team are outstanding. The local ALS Association chapter is amazing, too.
I am trying to stay ahead of everything so we aren't always reacting to crises, especially since it appears that we are not among the people whose disease progresses slowly. He takes Riluzole and Baclofen. We're waiting to find an infusion center nearby for Radicava. My husband has had several terrible falls and uses a walker now. His speech, swallowing, and mobility are all severely affected. He has done the voice bank and we have an iPad with stylus to use as a boogie board (is this the right term?), I'm making smoothies and cooking softer foods, we have ramps in/out of the house, and will have the ADA accessible bathroom done this week. But I am lifting him in and out of chairs, helping him in and out of bed, helping him roll over in bed. We have a Prius, which is a mobility nightmare. He's tall and lean (runner's body), and I have strained my back, shoulders, right arm, and hips with all the lifting and moving.
Thank you for letting me tell you all this. But also, as the people who are living this now, can you please tell me what I need to know? What's your best advice? What equipment do you consider essential? How do you even begin to find household assistance? And especially, with the very real, life-threatening threat of Covid-19. What are your go-to recipes for smoothies or meals that provide good nutrition, taste good, and help keep your PALS' weight up? How do you stay upbeat and cheerful while you are watching your beloved be ravaged by ALS?
Thank you.
My husband was diagnosed with ALS in May, 2020 at age 61. He ran a marathon in October, 2019 and another in December, 2019. Watching the steady march of this horrific disease is devastating. And I know you all know of what I speak. We work hard to live in the moment and find joy in simple pleasures every single day. And there is a lot to be grateful for. AND I also feel overwhelmed under the crush of grief and physical strain, as I am also continuing to work my paid job. We are currently in Tucson and have begun care with Dr. Ladha at Barrow Neurological Institute in Phoenix. Dr. Ladha and his team are outstanding. The local ALS Association chapter is amazing, too.
I am trying to stay ahead of everything so we aren't always reacting to crises, especially since it appears that we are not among the people whose disease progresses slowly. He takes Riluzole and Baclofen. We're waiting to find an infusion center nearby for Radicava. My husband has had several terrible falls and uses a walker now. His speech, swallowing, and mobility are all severely affected. He has done the voice bank and we have an iPad with stylus to use as a boogie board (is this the right term?), I'm making smoothies and cooking softer foods, we have ramps in/out of the house, and will have the ADA accessible bathroom done this week. But I am lifting him in and out of chairs, helping him in and out of bed, helping him roll over in bed. We have a Prius, which is a mobility nightmare. He's tall and lean (runner's body), and I have strained my back, shoulders, right arm, and hips with all the lifting and moving.
Thank you for letting me tell you all this. But also, as the people who are living this now, can you please tell me what I need to know? What's your best advice? What equipment do you consider essential? How do you even begin to find household assistance? And especially, with the very real, life-threatening threat of Covid-19. What are your go-to recipes for smoothies or meals that provide good nutrition, taste good, and help keep your PALS' weight up? How do you stay upbeat and cheerful while you are watching your beloved be ravaged by ALS?
Thank you.