bigritt
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- Jun 9, 2014
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Hello all,
My father (Mike) was diagnosed with ALS and FTD on January 9th, 2014. Brief history: My father was making very poor decisions for the past few years which just didn't add up. In the beginning of June 2013 he began slurring his speech. We thought he had a stroke and took him to the ER. The MRI showed a mini-stroke from long ago but was in a different part of the brain that would not effect his speech. By July we could barely make out what he was saying and he began choking on food and drink. By the end of August 2013 he could only and barely say "yes" and "no". He was finally referred to the ALS clinic but we could not get in until January. In the meantime his choking got so bad that I took him in for a PEG tube. Off the subject, my mom has advanced MS and totally relied on him to care for her. His care for her obviously declined significantly over the months/years. Mike was diagnosed in January and they wanted him to be in a nursing facility immediately. We didn't want to do this. We wanted to try to do it ourselves but quickly realized we couldn't with both of them being so sick. He now acts like a 10 year old. He can't speak a word now. He is getting weaker but still walks fine. He dresses himself but all the muscle is gone from his thumbs. He has muscle spasms all over his body (he's had this for a good 9 months). He breaths fine except when lying down he breaths very fast and is very slow to get up from a lying down position. He was on the floor the other day and I asked him if he could get up and he could not. The weird thing is, he is still very strong. Does he simply not know how to get up anymore even though he has the strength to do so? If I ask him to write as many words as he can in a minute with words that start with the letter "S"...he can write 1-2 words in 60 seconds and most times regardless of what letter I choose he will write the same word twice. He will constantly stare at himself in the mirror and laugh. Sorry for rambling but to the point....he is going room to room stealing other patients food and drink and choking on it. What can I do? I can't ask the nurses to lock him in his room...or can/should I? They are understaffed to say the least. I'm sorry for rambling and being all over the place in my post. Life is a whirlwind. I also apologize for my ignorance.
My father (Mike) was diagnosed with ALS and FTD on January 9th, 2014. Brief history: My father was making very poor decisions for the past few years which just didn't add up. In the beginning of June 2013 he began slurring his speech. We thought he had a stroke and took him to the ER. The MRI showed a mini-stroke from long ago but was in a different part of the brain that would not effect his speech. By July we could barely make out what he was saying and he began choking on food and drink. By the end of August 2013 he could only and barely say "yes" and "no". He was finally referred to the ALS clinic but we could not get in until January. In the meantime his choking got so bad that I took him in for a PEG tube. Off the subject, my mom has advanced MS and totally relied on him to care for her. His care for her obviously declined significantly over the months/years. Mike was diagnosed in January and they wanted him to be in a nursing facility immediately. We didn't want to do this. We wanted to try to do it ourselves but quickly realized we couldn't with both of them being so sick. He now acts like a 10 year old. He can't speak a word now. He is getting weaker but still walks fine. He dresses himself but all the muscle is gone from his thumbs. He has muscle spasms all over his body (he's had this for a good 9 months). He breaths fine except when lying down he breaths very fast and is very slow to get up from a lying down position. He was on the floor the other day and I asked him if he could get up and he could not. The weird thing is, he is still very strong. Does he simply not know how to get up anymore even though he has the strength to do so? If I ask him to write as many words as he can in a minute with words that start with the letter "S"...he can write 1-2 words in 60 seconds and most times regardless of what letter I choose he will write the same word twice. He will constantly stare at himself in the mirror and laugh. Sorry for rambling but to the point....he is going room to room stealing other patients food and drink and choking on it. What can I do? I can't ask the nurses to lock him in his room...or can/should I? They are understaffed to say the least. I'm sorry for rambling and being all over the place in my post. Life is a whirlwind. I also apologize for my ignorance.