My husband was diagnosed in Nivember 2023 Abd few weeks later he had feeding tube placed in. In beginning he was getting formula and food. And about 6 months not able to swallow and all meds and formula. He uses pads around the tubing. He uses the cinches to hold tubing. About every 6 months he gets infections and family doctor gave us…

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I am care giver to my husband Todd. He was diagnosed 2 years 4 months. His ALS mostly in his balbar area. Starting to show weakness in arms. I am the only one that can understand him. He drools, on vent, feeding tube. He is struggling with energy and daily living.

Can anyone tell me of a journal to guide me and help me deal with the anger,…

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Stay on it for 3-4 weeks it worked great for my husband. It helped keep him asleep all night. good luck

2 questions? Why will they not take people that are on NIV? What does pALS mean?

So sorry for your loss. Thank you for giving your opinion. My husband was diagnosed in November belbar. Going quickly. Most times I just want someone to tell me what to do. All the jumping through hoops is just too much some days.

Traveling is harder with all the equipment that my husband needs to take and formula bc he can not swallow so all feeding is ivy bag. One major thing pay for wheelchair assistance. That was a lifesaver in the airport. Get a medical form to explain you have ALS and supplies that can not go under the plane. Helps to call customer service…

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It took 9 months. The first thought was a stroke at first. Our local neurologist did so many mri’s, ct, nose throat specialists. He lost 72 pounds and was sent to IU ALS clinic as a second opinion. We walked in blind and within 10 minutes we were told he had ALS. No, idea that this was was a possibility. ALS neurologist said they had…

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My husband has the same. Question have you started text-to-speech app? I am struggling getting my husband to use it. I understand he must feel like he is losing control but him trying to talk and I don’t understand leads to him not communicating. Would love any input. It is so hard as a caregiver to encourage him or do I not push it???

I have gotten information why it is important, but I hate nagging at him. I believe he feels it is just to much with his 5 feedings, and ventilator at night. It is also hard to get him to use text to text-to-speech app also. I need help to understand why this is an issue???

I asked his doctor he does not have any family members and does not have SOD1

I am a caregiver.

my husband was diagnosed in November. It is in his belbar?? mouth area, he can no longer eat all through feedtube. On good days I can understand earlier in the day. Later as he gets tired harder to understand. I have ADHD and I take methylphenidate 20mg 2x a day. For people without ADHD gives energy. Our family doctor…

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How do you know if you have SOD1? My husband was diagnosed in November all his issues are he can not eat any food. Speech is horrible by afternoon. He has days he is exhausted. Doctor started him on ritilin which has improved his energy by a lot. Would this help help? He is on all the three R meds.

I want to share something my husband started 2 weeks ago for energy. Ritilin has improved his energy so much. I have ADHD as adult and teacher and I need it for focusing but different effect on my husband. My husband’s family doctor prescribed for him. Thought I would share. Might help with your energy. Not sure what I shared is all allowed by…

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