Old 10-19-2017, 03:33 PM #1 (permalink)
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I read your thread and it sounds just like my dad. He started slurring his speech in March - he was diagnosed in June with bulbar onset ALS. He got a feeding tube in September and is now using a walker. He was supposed to go tomorrow to get a trach, but decided against it. He sleeps a lot as well. When he was first diagnosed, I was like you- hoping it was wrong. I kept trying to convince myself and everyone he was misdiagnosed. I mean how can Dad have this... Dad is superman, right?! My Dad's seems to be progressing very quickly and he keeps saying he is ready to go.
Reading this made me feel like I wasnt alone in this. Thank you.
I am so sorry about your Dad.
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Old 10-21-2017, 10:44 AM #2 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

My dad turned 69 just after he was diagnosed. This thread seems like enough of a support group for me. I had no idea about this disease and how horrible it is until i started to research. I am devastated and angry- but what do you do with anger? Scream 'Its not fair'? Yell how great of a man your dad is and how he doesnt deserve this? It doesnt matter how much you yell or how good your argument is - fact is your loved one is sick and is not going to get better. My dad will die and there is nothing I can do to stop that. The likely hood of him making it to 2018 is not good. I want to scream the dr said 2-5 years... not 6 months. Where are my 2 years? But at the same time, I dont want my father to suffer.
Anna- do you feel like you just want time to stop - just for a minute- just to let your mind catch up. I feel like I have no time to soak up every minute I can from my dad. I want to talk to him one more time... I want to hear him talk to me. But that wont happen.
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Old 10-23-2017, 11:33 AM #3 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

Im in Alabama and Dad is in Missouri- I am a single mom with 2 little girls, makes for long travel nearly impossible. He was writing me, but he is so weak now.... He uses a walker and they installed a wheelchair ramp a few weeks ago.
My dad's twin has been with him for a couple of weeks- said Dad keeps writing 'I want to go home' says he is tired. I am not ready to lose my dad- but are you ever ready to lose your hero?
I laughed when I read your reply and it said 'i cant imagine how you feel' - I thought, yes you can... we are walking a very similar path.
Thank you for taking the time to write...
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Old 11-17-2017, 03:47 PM #4 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

They called in hospice a week and a half ago. He is bed ridden now. He kept choking on his tongue last week.. so they started morphine and a muscle relaxer. He sleeps most of the day away. My dad took us to the beach exactly one year ago and he was fine. He was here in May... slurring his speech... now it is november and he cant walk - can barely open his eyes. I cant stop crying . It still feels like a really bad dream. I'm sorry it took me so long to get back to you. How is your dad?
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Old 11-18-2017, 12:51 PM #5 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

So sorry Melody! ALS sucks!
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Old 11-22-2017, 03:51 PM #6 (permalink)
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Default Re: My dad was diagnosed with MND two days ago. What to expect?

My father passed away Sunday evening. Five months and 4 days after he was diagnosed.
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Old 11-22-2017, 04:00 PM #7 (permalink)
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Default Re: Melody's dad

I'm very sorry for your loss, Melody. You cared a lot for your dad and he had the peace of knowing that.

Best,
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Old 11-22-2017, 04:00 PM #8 (permalink)
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My deepest condolences.

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Old 11-22-2017, 05:45 PM #9 (permalink)
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I am so sorry Melody. Saying prayers for your beloved Dad.

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Old 11-22-2017, 07:14 PM #10 (permalink)
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Dearest Melody. How is it possible??? i can't believe it! We were just talking two months ago about our dads' progression!?? I'm so so sorry to hear about him!

Sometimes i sit in the car and just scream my anger away, but I can't now as I'm stuck in a public place. my heart is really hurting for you, Melody.
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Old 11-22-2017, 07:17 PM #11 (permalink)
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I am so sorry, Melody. Peace and comfort to you and your family.
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Old 11-22-2017, 07:23 PM #12 (permalink)
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I am very sorry. Peace and comfort to you and your family
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Old 11-22-2017, 10:51 PM #13 (permalink)
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My deepest sympathies Melody. Kate
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Old 11-23-2017, 09:14 AM #14 (permalink)
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Default Re: Melody's dad

Thank you everyone.
If Anna wants to 'yell' on here, let her. I get it. She is the reason I posted, we were at close walks with our dads... for some reason, I feel like I know her- I guess because we share the same pain. We all do.
Anna,
I screamed in my car all the way home from work- the friday before he passed. I scream in my car a lot. I scream in my thoughts, sometimes I cant get words to come out of my mouth. I almost didnt post that my father passed- I didnt want you to lose hope. Not that this disease comes with hope.... but you know what I mean. My dad refused the trac because there was no guarantee that after he got it, he would ever come off of the ventilator. That was one of the times I wanted to scream, but no words came out. What do you say? He progressed so quickly- I argue so many things in my head- none of them matter, none of them will bring him back or make the disease leave. I asked my dad to write me back in June- after I researched ALS and realized what would happen. I wanted to soak up as much of my dad as I could. Dad kept saying he had time - he wasnt dying anytime soon. I specifically asked him to write me every 5 minutes- ha ha ha... I now have 3 letters one from July, one from August, one from Sept. He donated his body to Washington University to study ALS.... they kept it for a day or so and then he was cremated. I leave tomorrow morning for St Louis to go to his ceremony which will be Saturday am.

A few things I have realized through this:
1- I will NEVER say to anyone "at least they arent suffering anymore".... thanks captain obvious... that makes me so mad when people say that to me... but, being a true southern woman, I just smile and say you are right. secretly, I want to punch them
2- Grief comes in waves- I think the hardest part is having to come to the realization that they are gone. you know, but you dont know.... if that makes sense.
3- all the sudden I am craving things that will make my adrenaline spike... I want to fight someone (I am NOT a fighter) I want to climb a water tower, jump a train, anything that is dangerous. I dont want to die, I just have this strange desire to be dangerous or illegal. I'm not sure where that is coming from as it is the complete opposite of my personality and my Dad's.... so maybe someone else felt that after losing someone?
4. I want people around me, but I dont want them to talk. When they do talk, Im not listening.
5. I wish people would ask me about my dad and pretend to be interested in who he was.... but I might stop talking halfway through a story, because I really just want to be in my thoughts.
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Old 11-23-2017, 09:16 AM #15 (permalink)
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So sorry Melody.

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