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New member
Feb 24, 2005
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.

Dear gayle,
sorry for the loss of your Dear father, take comfort in knowing that he's at peace now and not suffering anymore.
he was kind of lucky though, not being bedridden or paralyzed , most of us will go that route.
the doctors shouldn't be mad at him for not choosing a feeding tube.
the choice is always ours to make . your father did what was best for
may god be with you and your family and bring you comfort. sincerely elaine
Gayle - thanks for sharing your story. good or bad, it is good to hear what others are going through and to be able to share our own story. melissa
Dear gayle,

sorry to hear about your dad. he is at peace now. praise god. i hope that you and your family will find solace in knowing that now you will be able to carry on and help others facing the same sickness. i know that right now you have to heal yourself, but, one day my Dear you will be able to reach out and help others going through this horrible ailment. remember that you have us to help you out and to comfort you. only with our words mind you, but, we will be here for you. henry has refused a few things too, as he goes through the last phase of this als thing. we have been in palliative care, and brought him home again. however, he still manages to have a huge smile everyday and we are so thankful that he is here at home with us. how much time we have together now is unknown, but we relish in every minute. take care Dear, and if you need anything, feel free to reach our to any of us.

stay strong.

carol d. xoxo

your dad sounds as if he was a wonderful man. i'm very sorry for your loss. my dad has als as well. know that you are not alone. keep strong and share his story with as many people as you can - it can only help - you and those who hear it.

Hi tHere gayle and welcome to tHis site. my motHer passed away jan.2,2004. now i Have als. my mom's brotHer and cousin botH died of als as well. it runs in tHe family; lucky us! i know tHe next year will be difficult for you, but as otHers Have said, we're Here for you!
Hi gayle,
so sorry to Hear about your fatHer. i Have to agree witH elaine on tHis even tHougH you didnt get to spend mucH time witH Him after His diagnosis He seemed to accept it and not Have to go tHrougH all tHe otHer debiltating tHings tHat can Happen. i Hope tHat doesn't sound HarsH. i tHink watcHing people suffer so mucH and knowing you can do notHing for tHem takes a toll on person but instead you were able to spend quality time and tHe lord decided He didnt need to put your dad or your family tHrougH a painful experience. He is at peace and now its time for you take tHe time and make peace witH yourself.tHis forum is a really great place to get your feelings out and vent and wHatever else you may Have to do. your jouney is just beginning.
sincerely kim
als about loving someone
Dear gayle,
i'm so sorry for your loss. i lost my dad 3 years ago and not a day goes by that i don't think of him. i find my self saying some of the little rhymes he use to say to the kids. i guess in some ways i'm modeling the rest of my life after him (to make sure i never really lose him). i made a scrap book that stays out in plain view of my father from early in his life until Death so that my children could always look at them and not feel like they grew up not knowing him. tomorrow is his birthday! he would have been 70 years old. thanks for sharing your story, brought back lots of memories for me, some good, some bad. take care of your self and your family. you are actually needed more now than you were then.
Gayle, i too join in with the group to express my sympathy. i suppose when you look back at it all, although he was still young, he saw his family raised and safe. my mother died of cancer three weeks before her 70 birthday, 15 years ago. it was fast and took us by surprise. she was deeply religious, healthy for the most part, so why did he give her cancer?i suppose god had other plans for her, none of which we could understand at the time. i don't believe this als thing, and reasons why healthy people draw the card will ever be understood. i suppose i am like many of the others here and ask him why her, why him, why? your father seemed to have missed some of the other conditions affiliated with this as elaine mentioned. try to take some comfort in that. i know that is impossible to totally appreciate at this time, and it is very cliche. i doubt carol on this forum would give up a minute of all she deals with to have henry with her. he will always be with you.
as i said, i doubt we will ever understand the choices god makes. many of us here, no, all of us here, will never fully recuperate from the struggles als brings to ones life, or anyone living with any horrible disease. in time you will be thankful he is at peace and painfree and he will always be there. he didn't leave your mother with babies to raise alone, and he gave you his wisdom. none of this makes it easier on you or your family, but it will in time to a small degree. carol and the rest are right, you need time to heal, don't rush it, let nature help you along, and the people here.
as a sidenote, pertaining only to my family, not to be misconstrude as template for anyone who has lost a loved one, an angel sent to all of us the most amazing step mother, and step grandmother ever created. i think my mother had a hand in that one.
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