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Cal129

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Joined
May 14, 2014
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Reason
CALS
Country
US
State
ca
City
LA
Hi everyone. I've never posted on a forum before. It's really difficult for me to open up and be honest about all the struggles and how I'm feeling. It's especially hard because of the guilt I have for feeling this way. My dad was diagnosed (bulbar ALS) October 2011 (less than 3 years ago) and he is the most optimistic, strongest person I'll ever know. It took about a year to lose both his ability to speak and walk. Today he lives in a LTAC hospital on a trach/vent and we communicate with only eye blinks and an alphabet board.

I'm not sure what I'm seeking here. I don't even have words to express the pain I feel inside every day. I think back to the hard times only a year ago where at least I could help him into his chair, onto the toilet, outside on occasion, and even patiently wait for him to spell out sentences without much assistance. Who knew id miss those days...

I just wish I knew why. What a horrible horrible disease. No one should have to go through this. I'm humbled by the stories I read here and my heart is with everyone affected by this disease. I hope one day God, The Universe... Something... Will help me understand why.
 
.... I don't even have words to express the pain I feel inside every day. .......

you don't need the words, we all know what you feel and it is that solidarity you seek.
sad to have to welcome to the group, but welcome you are with understanding hearts

Meg
 
welcomee

>I just wish I knew why. What a horrible horrible disease. No one should have to go through this.

couldn't agree more!
 
So sorry you and your dad have to experience this! "Life can be a ..... and then there is ALS!"
Sincerely hoping we can help make this journey a little easier.
Hugs
Linda
 
Totally understand what you are feeling. Not a day goes by when I don't feel some sort of disbelief and anger that my mom (and I) are dealing with this horrendous insanity that is ALS. All I can do is hang on day by day and hope that her suffering does not continue much longer. I do get strength from reading others posts and knowing that I am not alone on this dreadful journey. Good luck to you. Keep talking to us.
 
Cal, we do understand only too well how you feel. Talking to people who know and feel the same angst will make you feel better--won't change anything but knowing that you are not alone in this is a good thing for you.

I loved what Meg said--welcome you with understanding hearts...
 
I am so sorry ya'll are having to go through this! I too understand the way you are feeling. There are many days I am mad, sad, and upset that me, mom, and dad are having to go through this. This disease is horrible. My prayers are with you! The folks on this sight know and understand your pain and are great help and comfort.
 
Believe it or not - I have never questioned God why this happened to my wonderful husband. I have questioned why he has not taken him..... So heartbreaking to watch this 24/7.

Debbie
 
>So heartbreaking to watch this 24/7.

Thinking of you today, Debbie ...
 
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