Finding it hard to be chipper.

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JennB329

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Mar 25, 2009
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106
Reason
PALS
Country
US
State
Ohio
City
Columbus
I introduced myself to this forum on Thursday and was hoping that it would be the last time I would need to check in on this forum. We were awaiting a definitive diagnosis on my dad this past Friday. I wished, hoped, and prayed that I wouldn't have to check back in here. But... my dad has officially been diagnosed with ALS.

To say that I'm not taking this well would be an understatement. He's got a great attitude and says that he's going to beat it. I asked him tonight if he was scared about what was to come... he claims not. Then why am I so terrified for him?
 
What you are feeling is normal. The days following the diagnosis are very very hard. Hang in there! Strength will come and soon you will switch into fighting mode like your Dad. Does he have limb or bulbar onset?

I am so very sorry for your father's diagnosis. As a fellow daughter, I truly know how you feel. You will find great support and great advice from the people on this forum. Try to focus on the present and not the future. It's hard I know. Sometimes I catch myself crying so hard and I have to remind myself my Dad is still here, still smiling, still hugging me, making me laugh and being the cutie that he is. Treasure the present. It's the best advice I can give you.
 
Hi, I have just reciently been diagnosed with Bulbar ALS..[02/09]. Most the time I feel very strong and then when something new appears I seem to have some real bad moments. They just last for a little while..... This is defently hard but with good friends and loving family I can do this.. smile! Lin
 
I am so sorry about your dad's diagnosis. It is wonderful he has a positive attitude, it makes all the difference. This is a wonderful forum with the nicest, most helpful people in the world. Please come here whenever you need to talk.
 
Thank you. And you totally hit the nail on the head... soooo hard to focus on the present. I actually managed to spend 5 consecutive waking hours without crying today. Since then, haven't been able to make it 5 consecutive minutes. My friends have been wonderful for the past 24 – 48 hours but it’s so hard to hear, “just keep going… stay positive,” from people who aren’t going through this. It means so much more coming from you folks who really do know what this is like.

He's still waiting for more tests but based on everything I've read, I'm assuming he also has Bulbar ALS as it started as slurred speech and a lack of control of the left side of his tongue.

Thanks again for the support.
 
Jenn, you are very welcome. I can assure you it will get better than it is now. It is amazing what amount of strength will come to you. I know exactly what you are going through. The first few days after the diagnosis, I was in a complete daze of grief and fear. I found out on a Monday and was away from my Dad working in New York, and until I saw him on the weekend when I flew home, I was a complete mess. I couldn't get through an hour without crying and I certainly had the hardest time in the world concentrating at work. I felt like I was in a nightmare and my heart literally ached. I assure you that this will pass. It may seem impossible now but magically you will receive the clarity and strength to fight alongside your Dad and the rest of your family. In the meantime, however hard it is, try to stay grounded in the present. Eckhart Tolle's "The Power of Now" helped me a lot. I have the book but I also got the audio version on iTunes and I would listen to it before falling asleep. It really helped me focus on the present.

Also let me tell you, your Dad's attitude and outlook will help him (and you) in the most effective way. Even doctors will tell you that a positive mental outlook is as important as medicine. Your Dad sounds like a great guy!
 
It's like you have eyes into my soul. :)
And something in the way that you keep telling me that "strength will come," really makes me believe you. I just wish it would hurry up and get here. :-(
 
I promise you the strength will come... and I hope it does hurry! :)
 
That one sentence is better than any hug I've had today. Thank you!
 
Today (3/29) is my birthday and I will go to sleep tonight knowing that when I blow out my candles, I'll be wishing for the strength to come.
Good night my new friends.
 
Happy Birthday

Jenn, happy birthday and welcome! I am sorry to hear about your dad's diagnosis, I have bulbar als also and can understand what you are feeling. I wish you strength even though I think that you already have it and remember we're here to support you any time you need to talk. Like Thelma said, think positive and it only gets easier.

Barry
 
Today (3/29) is my birthday and I will go to sleep tonight knowing that when I blow out my candles, I'll be wishing for the strength to come.
Good night my new friends.

First of all, Happy Birthday to you!

Second, give yourself some time to feel badly. An ALS diagnosis is a punch in the gut for everybody -- patient, family, and friends. Don't feel like you have to be cool, calm, and collected all the time for the next few days. Take a little time for yourself to adjust to things.

At this point, your dad has a name to attach to what's happening to him, but only time will tell how his course will go. Don't borrow tomorrow's trouble today. Take each day as it comes and let your dad's attitude guide you. The scary stuff may be a long way in the future, so why let it ruin today.

I'll be praying for you.
 
Happy Birthday!

JennB, I hope your ALL birthday wishes come true and I truly hope you have as joyful a day as possible with presents, friends, family and delicious cake! Take the cues from your Dad and allow yourself to smile. Today is also a happy day for him since I am sure the day you were born was one of the most amazing moments of his life! Most of all be good to yourself and give yourself the permission to get through this in your own way.

trfogey I LOVE what you said...

Don't borrow tomorrow's trouble today.

Barry, your input, as a Dad, is so appreciated. I can't even tell you how much.
 
Happy Birthday Jenn.

I hope today is a better day for you and tomorrow even better than today.

Its natural to have your crying times. Don't feel bad about it , accept that your soul is getting rid of the sad feeling you are having. You will find it does get easier.

Accept what your Dad says about being not scared. Its weird but I know exactly what he saying . I thought I was kinda bent when I accepted that on the way home from my DX.

Its all about attitude and energy. Give em the attitude and keep the energy. ;)

Smile, it will make people think you are up to something :)

Glen
 
Happy birthday, Jenn!

I hope you had a good day and may tomorrow be even better!

Zaphoon
 
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