catcaniac
Distinguished member
- Joined
- Dec 11, 2010
- Messages
- 189
- Reason
- Lost a loved one
- Diagnosis
- 12/2010
- Country
- US
- State
- North Carolina
- City
- Sneads Ferry
I've never posted in this section of the forum before but after this week, I am wondering if it will be something I will now be frequenting. How do you know if your PALS is developing FTD? We won't be going to any more doctors with the condition he is in. We finally got his doc to make a home visit last night but I had way more questions than he obviously had time for. We had been planning to take Eric to a pulmonologist on the 14th of June but the doc said he thought taking him out would be too difficult on him. Since two days ago, Eric has had severe anxiety attacks. There was an incident with the nurse and the vent and for two days straight, he was begging me to turn it off and bag him. He hasn't slept in two days. I guess I am asking about FTD because last night, I gave in to his demands almost non-stop all night. He has to communicate with the eyegaze and it is very frustrating. That said, he manages to get out commands at an alarming rate. By about 4 in the morning, two hours taking commands, and 48 hrs with no sleep, I was crying and I explained to him that he was hurting my feelings. That I was doing everything to make him comfortable and I didn't feel like he appreciated it at all. He indicated with his eyes that he wanted to say something. I went to the Tobii and went through all the command letters. He said no to them all. I then asked him if he needed to type something on the letter board instead, me crying the whole time. I thought sure he was going to type out he was sorry or something. Instead he types, "trach run". Which meant he wanted me to change the dressings on his trach. I lost it. He no longer acts like he has any concern for my welfare. Many times, he seems very confused and doesn't make sense. I am now thinking that he has developed this FTD along with ALS basically taking every physical ability he has but his eyes. When we ask him questions, other than care, we get commands back about his personal comfort. I think at this point, if I don't attribute it to the ALS, it would be too difficult for me to handle. It does make sense as he was always such a caring person to me. Any insight would be appreciated.