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Feb 3, 2008
Loved one DX
Hey guys! I know my mom has found some support and gianed some strength from join this fourm. I need some of that strength and support too! Granted its her husband who has this nasty disease but its my dad, my hero.

My dad is only 45 years old and still very active! It all started going down hill after a freaky hospitilization last year in April. We have no idea why he was so sick and what it could be. Then he went to several doctors and they still cant pin point what he has. Now hes been told its either MMN(no clue what the real name is) or ALS.

I've come to terms with my dad having ALS from all the research I've been doing for a college paper. All the symptoms I've read are what my dad has. And it scares me that he wont be able to walk me down the aisle or be there to get to know his grandchildren.
It hit me more than ever after watch 27 Dresses. It was a cute movie but Im just scared that he wont be there to do all those things with me. I really want to have that father daughter dance at my wedding! I mean I would have someone to walk me down the aisle but I honsetly rather not have my brother give me away bc he would be to eger to do so!

Well if anyone has any advice or comments to share with me please do so! I could always use the help in dealing with my Hero having this nasty disease!

Hi Heather- we are more than willing to provide as much support as Possible. This is a shock right now- give youself time to adjust. Maybe your Dad will be like a lot of folks around here who live full and happy lives for years after DX. He could still be there to walk you down the aisle- maybe with walker :-D but don't give up all hope yet. Hugs, Cindy
Thanks Cindy! His sympotms arent that server yet but hes loosing some motions and its scary bc we play on a softball league and hes one of the main pitchers! But thanks again for the support!
Hi Heather,

As a Daddy's girl myself I have to admit that watching my father suffer from ALS has been the worst experience of my life. I was fortunate that he was there to walk me down the aisle but there are so many things I wanted to share with him that I won't get to.

My advice is to spend as much time with him and if possible, make a list with him of things that you want to do together while he is still capable. My Dad and I went on a trip to New York so he could show me where he was born, a trip that was invaluable to both of us. I also took time off work to spend it with him. Knowing we had a limited time to build memories forced us to make the time count. I can honestly say that I have NO regrets in regards to my relationship with my father and that is because we took advantage of the time the best we could.

As far as your emotional state, hang in there, talk to friends and family, and a counselor if you find yourself feeling too sad or angry or stressed. Watching your father progress through the illness will be very hard and you may need help to cope with it.

Take care,

Hi Heather

I can relate to some of the things you are saying. My dad was always a very active man worked long hours but always found time for his family. Then almost two years ago my mom passed away she died of heart failure she was only 49. Shortly after that we notice things changing in my dad his words where slured and he was having a hard time swallowing. It took the doctors over a year to figure it out. Then on October 24 we got the news. The one thing that keeps me strongh is knowing that I have this special time to share with him. My mom leaving us so suddenly was the biggest heart break of my life. Each day I will cherish every moment I have with my father and my children will always remember how much they loved their papa, and when my dad leaves this world I know that he will be reunited with my mom and that brings me comfort. Unfortunately we are left here to go on with out the most important people in our lives but they are always in our hearts & souls. So I try to treat each day as if it is the last telling my dad how much I love him, spending time with him and my family. It also sound like you and your mom will be able to lean on each other when it is needed. My thoughts and prayer go out to you and your family!


I too have seen the movie 27 dresses. TOO CUTE! First off, let me tell you a little bit about my situation. I am caring for my sister-in-law who was diagnosed a year ago last November with ALS. She is 47 years old and her health has declined tremendously in the last 9 months. We continue as a family to take it one day at a time. I am not sure how I came across this website today, but for some reason your e-mail caught my eye.

I am sorry to hear about your dad. He is so young to have been diagnosed with this horrible disease. I do not know if you are engaged now or just wondered what the future may hold for you one day at the alter. Either way, if it is meant for him to be there he will get you down the aisle,not to worry. You always have hope, love and support from family and friends to get through these special times in our lives.

I pray he will be there for your wedding day. Just know that he will need YOU now more than ever. He must be so proud to have you as his daughter!

May god watch over & care for you and your family.
Take Care,
Helloi Andrea- welcome to the forum. I hope we will be able to help you and your family along this journey! Cindy
Hi Wendy....I am sorry about all the heart ache that you have experienced. Losing a loved one so suddenly must just be awful. My mother passed away 5 1/2 months ago from bulbar als and the only good thing about this disease was that I had 15 months from the time of diagnosis to spend every spare moment I had with her. I was able to tell her how much she meant to me and how much I loved her. She did the same in return. My brother and I cared for her without any outside help (her wishes) until the last 4 days of her life where she was admitted into the ICU and passed away from respiratory failure. I miss her terribly, I wish I could still have more time with her even if it would only be one day but I could no longer wish her to be here and suffer the way she did.

God Bless you and your family.
Hi Heather, I'm new to the site so i'm not sure how it works yet, but i'm 22 years old, my dad got diagnosed 4 years ago with ALS. It's such an emotional rollercoaster, but i can relate to the whole wanting your dad to walk you down the aisle. Not sure what type of music you listen to but there are a couple of country songs about father daughter and i cry every time i hear them because i know my dad may or may not be there for my day! You'll start to think thoughts like i wish my dad was here for this or for that, but don't let them consume your mind or you'll get too depressed, you have to live in the present and stay positive. And Cindy's right he may be able to walk you with a walker or in a wheelchair! As far as the softball goes, it will be a change not having him as a pitcher, but at least he can still be present to observe. For every situation there will be something negative you can make out of it. Life is now changing, but i try and remember this quote "life is not about waiting for the storm to pass, it's about learning to dance in the rain."
Hi Heather,
My Dad was diagnosed with ALS 2 months ago. This new was so devastating to my Dad and our whole family. Being Daddy's little girl, I can totally relate to how you are feeling. I am getting married 10/25/2008 and my heart is broken because he will not be able walk me down the aisle or dance with me. However, we are going to make it work! He will be in his wheelchair right next to me as we go down the aisle. As far as the Father - Daughter dance goes, our DJ is helping me with a slide show of pictures of me and my Dad played to the song we would have danced to. It's not how I envisioned my big day, but the most important thing is my Dad will be there right by my side. That's all that matters. Try not to focus to much on the negative...I know how hard that is. Focus on the time you have now. Best wishes to you and your family.

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