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charbran11

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Sep 14, 2011
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Loved one DX
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pa
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waterford
I've only posted once before. A little background. In October my dad was diagnosed with als. Right now it is mostly affecting his arms/hands with weakness. Very minimal anywhere else so right now its only lower motor neuron disease. He has had symptoms since last Sept (2010). Yesterday he had a doc checkup and they asked if he's noticed any changes. He said in the last 2 months he's gotten a lot weaker on his arms. It's not affecting anywhere else that he is noticing yet. They are going to make him wear a bipap (i think) for night b/c he snores big time...but this is nit New he has always snored. Anyway, I am just beside myself with worry and sadness. I am 30 yrs old with 2 boys. The one has the most special relationship w my dad that I've ever seen. The other one us only 6 months and dad can only hold him like a couple min. I am devastated with what this is doing to dad and how my boys will be. I just love my dad so much and cannot imagine life without him or even with him seriously impaired. I know my mom will nit handle it all well. I just can't believe this us happening. And we know noone that has had this disease. The doc couldn't really tell us anything at all. We feel lost and helpless and hopeless. I've been diagnosed with post partum depression and am taking meds. I really don't know if I can handle this... We just don't know what to expect.
 
Well very sorry about your dad, but this forum is wonderful, you will get all kinds of info, make friends, learn how to adapt, cry on each others shoulder. We are a close little family, so feel free to join in, cry scream, rant rave, we all have done it.Just breathe and remember not to think too far ahead.:)
 
Stay strong and stay calm for your children and your Dad. My husband has ALS and started in his arms also. He grows weaker each day. We are all sad and worried on this forum. Lots of good advice and comfort here. My children are in their thirties and my husband can no longer hold his grandchildren. It breaks your heart. But.....they sit
on his lap and they ride on his walker. Our three year old helps PaPa because she
knows he is not strong. Try to find things to do to make memories and take lots of pictures. Each ALS journey is different. We have been on ours for three years now
and although his arms are pretty much useless, he is still on his legs. We praise God for that. Good luck to you and your family. Concentrate on what your Dad can do and don't dwell on what he can't. That is my husbands motto.
 
Sooo sorry about dad, so sorry you found us.Our friends motto here is, living with ALS, not dying from ALS. Make the very most of it that you can. Do as much as he wants to do. Take a wonderful trip, while he can.
Believe me I know your sadness and depression. We have all gone thorough it on here. You need to turn it around though. How many parents pass in car accidents, heart attack ect. They do not know to spend as much time as possible with their loved one, we do. Take pictures and cherish every single second.
I wish I knew about this forum when I was learning with my dad. I had alot of questions that no one could answer. They would have answered them here by the same day, people here are THE BEST....Good luck
 
I'm so very sorry you've had to join us on the forum. As sad as it is to have to be here, please know that the support, knowledge and compassion you'll find will prove invaluable to you during this process. Please know that others will be keeping you and yours in their thoughts and prayers! Take care!

Ruth
 
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I love tipacow's welcome above. . As for dad, I know the pain you are feeling. I know you are depressed. There is nothing you can do, Dad's always fixed things and they or anybody else cannot fix this. I am sure your kids add alot to his life. Try not to be depressed you have planty of time for that. My kids were 14 + 16 when my dad went to the party in the sky. I am an only child and it sucksssssss.My husband and kids are great, and they were very supportive through this. The day my dad passed was June 15, 2009, it was a big, big, big day for us, my son was graduating 8th grade(he has dyslexia)this was a real BIGGIE. At 2:00 am dad was gone. I will never forget his sad face at the graduation as I slipped in the back, really did not want to talk to anybody. Too fresh, i knew dad would get out of going. But wow. Stay as strong as you can and don't let him see you down, enjoy the time that you have with him right now.As hard as it is.
 
Welcome to the Forum family.....sorry you have to be here, but there are alot of knowledgeable folks here and alot of caring folks too. Take it one day at a time...just love your Dad and dont let your fears get in the way of that loving. Praying for you and your whole family.
 
Very sorry about your dad I understand how your dad feels. I am very close to two of my grandchildren. And don't want to leave.them. I know he is fighting as hard as I am. Hugs. Felica
 
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