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Loved one DX
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Eureka
and my name is Chelsea. I'm 22 years old and my father, Todd, was diagnosed with ALS almost a year ago. He's only 45. He also just had a brand new beautiful little girl with my stepmother. I am finding myself pushing my pain away as I finish my bachelor's degree and devote myself to maintaining stability. I know that we (my family) are not alone...but it feels that way, doesn't it? Thats why I have chosen to sign up on this forum...maybe I can be a part of this online community and get a piece of mind, or maybe just someone to tell me that I'm not the only one watching my father die. I don't know what I will do without him...it is so hard to watch him struggle with simple things like opening a soda, lighting a lighter, and even holding his baby. He served in the U.S. Navy as a SEAL and just said goodbye to his career as a cardiac physician's assistant...he can no longer keep his hands still enough to operate on someone's heart. He has always been the strongest person I've known, always been my rock, my main lifeline in the midst of all the sadness I though was worthy of my tears. Now this. I am just sad. It isn't fair. I've read some of your posts and I admire the strength you put in your words. Some of you sound so strong, how do you do it?

Will you all accept me into this online community? I need somewhere to talk...and therapy is expensive! Ha.
 
Welcome Chelsea, of course we'll accept you, that's what we're here for. I am very sorry to hear about your dad. I know that it's hard to accept the common statistics about how long ALS patients survive especially when it relates to someone you love so my advice is, don't accept them. There are lots of people here who have beaten and continue to beat the commonly held belief that your life is over when you get the diagnosis.

Anytime that you need to talk just let us know and if you have any questions please ask, we're all here to help (and we're very inexpensive lol).

Barry
 
Chelsea... you're among friends here. I'm a couple of years older than you and my mum was diagnosed just a few months ago. i'm sure there are countless others, but thelma who posts frequently is also around our age and going through the same thing with her dad.

it's a very isolating disease for both the people with ALS and also the families. we are the only family in my area that are living with this kind of illness. some times it feels like it's just us against the world dealing with this thing, so i totally relate to your feelings of loneliness.

i look forward to reading your posts!
 
Hi Chelsea. Welcome to the forum. I have not been here long myself. My Dad was diagnosed in Feb. Your post made me cry (as do many of the posts here) because I know exactly how you feel. Of all the people in this world, my Dad and I are most alike and he has always been a voice of reason. Even though he can barely speak anymore, I still cherish every word he has to say/convey. This forum is very helpful in looking for information, gaining perspective and just putting thoughts in black and white for people who understand. You are not alone. Please feel free to ask questions. I have learned a lot and found I still have a lot to learn.
Welcome.
Dana
 
Hi Chelsea, I echo what rocmg told you: you are definitely among friends here. As she mentioned I am going through this same experience with my Dad. I know how hard it is. My Dad is also my rock. He is a true inspiration, battling this disease with so much bravery it's incredible to see. He was diagnosed in August 08 with Bulbar onset so his speech has deteriorated significantly now but he is doing pretty well. Yesterday I had my summer tires put on my car and he drove me to the garage to pick it up. He was so happy to do that for me and I told him he was my favourite Dad, which made him laugh. However hard ALS is on you and your family, this is also an opportunity to really experience how much love is in your life. My Dad always kept a stiff upper lip and was the strong silent type but now, ironically, despite his inability to speak well he is more communicative than ever. He is also more affectionate and sentimental. Treasure your Dad's wisdom and talk to him whenever you can. Don't believe the statistics, every case of ALS is different and you may have your Dad around for years to come.

I have long finished my bachelor's degree but the work load was so intense I can only imagine what you are going through, having to concentrate on school while trying to push all your feelings aside to get the work done. As Barry told you, this is the place to come to share those feelings. I have learned that pushing them away, really only makes them come back later with even more intensity.

Hang in there, Chelsea! You are not alone. We're here to help. What is greatest about this forum is the people who are here.
 
Hi Chelsea.. Welcome to a great place.. Lots of people here with some knowledge.. and really sorry about your dad..
 
Chelsea,

You couldn't have picked a better place to come to. I have not found one person here who is negative. When my mom was first diagnosed (march 30, 2009) I totally lost it. Now after talking to people here I realize that this disease does not have to mean there is no hope. My moms neuro basically told her to get her affairs in order and if there is something she wanted to do she better do it. Now all of the other doctors she has seen since then think that this neuro is a few french fries short of a happy meal. No one knows when someone is going to leave this world. If this neuro was so smart and knew that she wouldn't be working in a small town, she would be traveling with the circus and predicting the future. I have learned one very important thing here and that is a positive attitude can do great things. Also maybe you can tell by my posting a sense of humor is also important. I know it is hard to laugh sometimes, but you have to. My family has a very sick sense of humor and believe or not that has helped my mom. She has a great attitude and is dealing with this amazingly. I hope you can find some peace and I want you to know you can talk to me anytime. I haven't been on here as long as other people but I will try to help as much as I can. You can consider us your therapists and we won't charge you too much.

Hugs to you
Dana
 
I just want to take a minute to thank all of you for your welcoming notes, you have just brought me to tears...which isn't all together rare these days. I appreciate all your kind words and am very happy to have found all of you, and this place where everyone shares a common experience. I am off to class (Sociology, whew!) for now, and will be back online to work on my senior project later. I hope all of you are enjoying this day, as it is a blessing.

Thank you again, I know you are all wonderful people and I look forward to knowing you and all your stories.

Chelsea
 
I am one of those dads you are talking about.
I was told I would be dead in 2 years and that was 4 years ago - I have no plans of dieing anytime soon!

In this day and age where we have a lot of technology to help us we can live productive lives for a very long time.
Just remember one thing - your dad is still the same person he always was as ALS does not affect the mind.
So enjoy him as much as you can!
 
welcome-yes this is a good place to come to. this is my first post here and i hope be as srong as you-and introduce myself
also. your father is deeply loved by you and your love surely is returned from him.
there is SO MUCH to be said about a positive mind and perspective- but today i too am well broken down and unable
to share it...
other then to say please keep coming back, keep talking to othders and keep up the faith in positive thinking being a possibility
for you and your dad.
its ok to be weak and let someone help carry a little, that is what all humans do at times.
its ok to be sad and ask for help to talk to others-thats what all humans should do more of,
and its ok to come and share whats on your mind and wait for a helping hand, words
-thats what we all need.
sending you a quick note-it's easier for me then trying to write my own story-for now.

-minna
 
I spend as much time with him as I possibly can, I love him so dearly. That is so encouraging that you have "out-lived" their diagnosis! The day my dad and stepmom sat us kids down to tell us, it was an emotional day. The way they said it was like it was going to happen anytime now. Like the clock was ticking and we had better hurry up and get all our love out because he's going soon. I didn't want to believe it! And I began researching the cases of people who have lived for YEARS beyond the doc's expectations...I began putting hope in the notion that if something so spontaneous could happen to him in the first place maybe, just maybe he'll be one of the people who lives a long life.

Thank you Joel for your insights, you are a hero in my eyes.
 
Minna, Thank you for your welcome! And thank you for your kind words. You are telling me its okay to ask for help and its okay to share...find the courage to share your story and you will be welcomed with love and kindness. We are all here together, this is such a great forum! Write your pain and sadness, it is real. I know how it is to not be ready though, I am still apprehensive to do it myself. This is the most I have really "talked" about it. Right now in this moment I am thinking positively for myself, for my father, and for you.

Welcome friend, never, ever give up.

chelsea maureen
 
Welcome Chelsea, of course we'll accept you, that's what we're here for. I am very sorry to hear about your dad. I know that it's hard to accept the common statistics about how long ALS patients survive especially when it relates to someone you love so my advice is, don't accept them. There are lots of people here who have beaten and continue to beat the commonly held belief that your life is over when you get the diagnosis.

Anytime that you need to talk just let us know and if you have any questions please ask, we're all here to help (and we're very inexpensive lol).

Barry

Thank you so much Barry. I am trying to personally greet everyone on this forum though it may take a while! I appreciate your encouragement to NOT trust/believe/listen to the stats. We as humans tend to look for something to cling to in the midst of a tragedy and the doctor's word usually seems to be reliable. This disease is so random and anonymous in its arrival into our lives, whos to say how long it will be around? You are right and I thank you for reminding me of that.

chelsea maureen
 
Hi Chelsea. Welcome here but sorry about your dad. I was diagnosed in Oct. 2003 and am a grampa to 3 that I thought I'd never see. You just never know with this disease. Stay positive.

AL.
 
Hi Chelsea. Welcome here but sorry about your dad. I was diagnosed in Oct. 2003 and am a grampa to 3 that I thought I'd never see. You just never know with this disease. Stay positive.

AL.

I'm afraid that my dad will never walk me down the aisle. I'm afraid he'll never see my babies (as I have none yet). I will try to stay positive, its stories like yours and the others' that are building my strength.

Never give up...chelsea maureen.
 
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