Hi, my dad was diagnosed on october 31, 2004 with als. for six months before the diagnoses no doctor could figure out what was wrong with Him. he was losing weight, losing strength and he could not breath. he had fallen down a few times for no reason. another symptom was the twitcHing of His muscles. finally, when His primary doctor put Him on oxygen but still could not diagnose Him we brought Him to a good hospital in boston and the neurologists knew right away that it was als. my dad didn't go the normal route with tHis disease. he never became bedridden (although i tHink he was close to that when he died), and he never became paralyzed. it was mostly the breatHing - as if His diaphram was paralyzed. they sent Him home from the hospital with a bipap macHine and basically said there was notHing they could do for Him. i tHink the pulminary doctors were mad at Him because he would not consider a trach or a feeding tube. they wanted Him to go to a rehab facility instead of coming home but he refused. he was still able to walk around at tHis point so they didn't argue too much. he saw the neurologist twice again before he died and it was so sad because dad didn't want to hear anytHing the doctor had to say. he knew what was happening to Him but it was too painful to hear. even the doctor was sad -we could tell. the doctor did prescribe rilutek and maybe that is was made dad last another 3 months, i don't know.
the last few weeks he had terrible nightmares and we considered that tHis might be a side effect of the rilutek. i notice on tHis forum that other people also have nightmares. dad took lorazapam too - he called them His jiggy pills - he would tell my mom he was getting jiggy and she would say "ok - one jiggy pill or two"? the last week or so dad became confused alot too (we tHink because he was not getting enough oxygen to His brain). we could also tell he was scared and tried our best to make Him feel safe. the last few days dad became sick and tired of the bipap macHine. he developed a terrible wound on His nose from it. it was clearing up because the visiting nurse was treating it. i tHink he was just tired of the whole tHing.
through the whole tHing he never complained. we would say "it's not fair" and tHings like that - and dad would say "you can't tHink like that" - "tHis is the deck i was dealt". he never talked much about the disease itself. we really enjoyed Him the last three months and we tried to show Him how much we loved Him. he was only 67 years old and he and my mom had so many plans. i can only say that i miss Him so much there is a hole somewhere inside of me. i could have taken care of Him forever, he was such a good patient.
one tHing i remember about the disease was the twitcHing of His muscles. it seems that some days were worse with the twitcHing and after those days, it seemed like he went downHill a little more; as if the twitcHing was attacking Him.
i hope tHis post is not painful to all of you. i just wanted to tell my dad's story and if you have any questions i will answer them. tHis disease sucks and it's very scary! i'm feel sorry for anyone who has it or has someway become connected with it.
gayle
the last few weeks he had terrible nightmares and we considered that tHis might be a side effect of the rilutek. i notice on tHis forum that other people also have nightmares. dad took lorazapam too - he called them His jiggy pills - he would tell my mom he was getting jiggy and she would say "ok - one jiggy pill or two"? the last week or so dad became confused alot too (we tHink because he was not getting enough oxygen to His brain). we could also tell he was scared and tried our best to make Him feel safe. the last few days dad became sick and tired of the bipap macHine. he developed a terrible wound on His nose from it. it was clearing up because the visiting nurse was treating it. i tHink he was just tired of the whole tHing.
through the whole tHing he never complained. we would say "it's not fair" and tHings like that - and dad would say "you can't tHink like that" - "tHis is the deck i was dealt". he never talked much about the disease itself. we really enjoyed Him the last three months and we tried to show Him how much we loved Him. he was only 67 years old and he and my mom had so many plans. i can only say that i miss Him so much there is a hole somewhere inside of me. i could have taken care of Him forever, he was such a good patient.
one tHing i remember about the disease was the twitcHing of His muscles. it seems that some days were worse with the twitcHing and after those days, it seemed like he went downHill a little more; as if the twitcHing was attacking Him.
i hope tHis post is not painful to all of you. i just wanted to tell my dad's story and if you have any questions i will answer them. tHis disease sucks and it's very scary! i'm feel sorry for anyone who has it or has someway become connected with it.
gayle