my dad just diagmosed.

[charbran11]

My dad was just diagnosed with als earlier this month. Well that's what the doc said from the Cleveland clinic even tho right now it us just affecting his lower motor neurons. He said it us just a variety of als and eventually the upper motor neurons will catch up. And that's basically all he said. Nothing about what to expect or what to do or anything. We just feel left in the lurch with this devastating news. He has been dealing with muscle weakness (which is only in his arms and that is his only symptom) since about last September. We are just at a loss and are in disbelief. Him and my son who is 4 have this amazing bond and I just had another baby in May and he can hardly carry him for longer than a few minutes. I'm just devastated to think about how he is goi.g to miss out on them and vice versa. I am also trying not to show my immense worry/sorrow about what's happening b/c they don't need to worry about me worrying about dad. (i have post partum depression and if they knew I was having anxiety about this they would worry. Now I'm just rambling because I really don't know what to do..

 

[Mrs C]

Stay on here, stay close! You need to connect with the experience some members have, so you can help your dad LIVE WITH ALS, NOT SIT AND DIE FROM IT. Yes, change is coming, but the help and advice you will find here is priceless. Make and keep a good relationship with your ALS Clinic. Most importantly, just treat him like always and love him like forever.

 

[missmineau]

So sorry, its three little letters that change lives forever. My mom was diagnosed in Septemberish of last year, it was a huge shock. Know you are not alone and I hope you find comfort and advice on the forum, its been a great site for me. We are all, no matter what stage our PALS is in, on this journey together. The worse part for me I find is the not knowing, the unpredictability of the disease. You do adjust though and you live for each day. Take the time and truly love each other!

 

[tammyg]

Ramble on girlfriend, ramble on, get it out. Look at the positive , your dad was able to see and spend time with your children. I was lucky my kids were older when dad passed (14 + 16) There is no good time. I will never forget my dad passed the day my son graduated from 8th grade (he has Dyslexia, and he went to a school for 4 years just for learning disabilities, this was a biggie for u$) Let's just say we will never .ever forget that day. I really can't say good and bad that day, Good & painful Good, dad is not suffering anymore. I will never forget the expression on my son's face though the happiest day turned into the saddest day, Grandpa was his fishing buddy. . You should tell your Dr about the depression with the new baby, maybe he can give you something for that. Alot to handle in a small amount of time , stay strong , you are their rock.

 

[HelenL]

charbran11, if your Dad has been having problems with it for more than a year and still is only in his arms, then keep praying that it is a slow progression... and he may qualify for some of the clinical trials that we have a lot of hope for. Check the Dex trial, it's currently closed, but there has been some talk about Biogen doing another phase with higher doses, and the NP009 (?) trial that is also going on.

Life is fatal, I choose to say that I'm living with ALS, not dying from it. I may die from it one day, but not soon!

Hug your kids close, and you definitely should talk to your doc about your depression, you have a lot on your plate and you need to feel better in your own life if you want to be there for your family.