Status
Not open for further replies.

sdolphin63

New member
Joined
Jul 28, 2012
Messages
2
Reason
Lost a loved one
Country
US
State
Maine
City
Portland
Hi everyone. so i am a 15 year old girl. and i just found out my dad has ALS. but my parents don't know that i know. i accidentally saw all the information. and I'm on the verge of a complete mental break down. I'm so overwhelmed with emotions. incredibly scared and sad about what is going to happen- i feel like I'm always about to cry, and I'm always upset. I know they are trying to protect me and my younger sister by not telling us about it, but every time i look at my dad i know that soon he will be gone and that i know this but i shouldn't. its almost guilt i guess. but i don't know how to go on with life.

I need someone to tell me what is going to happen in the next year or so. and what will start happening to him, how fast symptoms will really start showing (he went to the doctor only for a bad cough- and they discovered this i guess!) and how long he as left. i need some help. how worried i should be. please. i don't know what to do anymore.
 
I think you should let your parents know you know sweetheart. You mustn't carry this load alone. That said, everyone is different in presentation of symptoms and how fast they show their symptoms. I'm so sorry. Please get off this site and go talk to your parents about it. They won't be mad at you. They need your love right now.
Love,
Marta
 
Are you sure about this? What did you see? I don't mean to be condescending, but medical reports can be confusing.

If it is so, I'm sorry you found out by accident. I reckon your parents were trying to get up the nerve and the know how to tell y'all without scaring you or your younger sister. (how old is she?) Since you know, I would suggest you approach the parent you feel most comfortable with and tell them you are aware of the situation. It's OK to be upset. Who wouldn't be?

As to what will happen in the next year or so, no one can predict. ALS affects each individual differently. I know you would like a definitive answer, but there is none.

Your parents will need you in the coming years to be a strong young lady. You can always come here for advice and you might suggest that your parents visit here as well.
 
My daughter was 15 when we all found out he had ALS. She was just starting her freshman yr of high school, and her brother starting his junior year. Dad is still here, and is looking forward to seeing his daughter graduate this coming school year. Please either talk with your folks, or someone close to you to help you talk with them. It is a scary disease, but until you know all the facts from your parrents, you are going to be a nervous wreck. Let us know if you need some help.
 
We didn't tell our children right away. We wanted to wait till after my youngest sons wedding as we didn't want it to be ruined by our news. When we finally told them it was one of the hardest days of our lives.we didn't want to see them hurt. This was over two years ago. My husband is still walking.still talking. We don't know what will happen or when. Neither do your parents. Talk to them.
 
I also didn't talk to my kids until I was ready to... with my then 16-year-old daughter, it was within a couple of months, with my 11 and 13 year old sons, it took over a year. Since you found out (and remember, it's possible it's not ALS unless everything else is ruled out), you do need to talk to your parents about it. Do not say anything to your siblings, just as your parents were trying to protect you, you now need to be on the same page with them.

Everyone's timeline is different, I'm still here more than 2 years later, and though I can't walk, I'm still functioning! With the clinical trials, there is more hope than ever, especially for the newly diagnosed. Remember your job is to be a good student, help out when you can, and grow up to be a good person; their job is to love, protect, and guide you to be that person. As a side note, I nearly lost my father to heart disease when I was about your age; we were terrified... I was in my 40's when he passed away. Anything is possible, and try to stay hopeful.
 
Tell your parents what you saw. One of two things will probably happen - either they will correct you because you misunderstood what you read, or they will admit it is true, and probably be very relieved that you know. I hope you are wrong - but if you're right, better that you admit that you know so you can turn to each other for support.

I'm certain your parents would not want you to bottle this up and worry in secret.

Big ((hug)) to you.

I will say a prayer for your Dad.
 
She was last on here a minute after she posted this. Let's see if she comes back.
 
not to be calloused, but i'd like to know what she was snooping in to 'accidentally' see this information. my daughter was 21 when i told her and i had kept all such 'information' put away, even though she knew i was going to dr and having tests.
 
You need to tell you parents what you saw asap. This is a very serious disease but each person progresses at a different rate. They are also making more breakthroughs in finding a cure for this horrible disease. Talk to your parents and just take it one day at a time. Keep the lines of communication open with your parents. Be strong sweetheart. Kim
 
I agree with the others. Talk with your parents and tell them your fears sweetheart. And it is true everybody's progression is different. Steven Hawking has lived with it for 45 years, and many on here for a long time also. Make everyday count. My son was with me when I got my diagnosis and he looked at me and said "You could get hit by a bus today too", put it in prospective for me. None of use know our time here. Think positive and hope and pray for the best, that's all any of us can do. Hang in there and let all those thoughts and feelings out you will feel much better hon. {{{HUGS}}}
 
Thank you everyone for your kind thoughts and support. It helped a bit to read them. I know I really do need to tell my parents I know, but I just have no idea how to bring it up. Some days I am fine, and others I am just overwhelmed with sadness. Especially when things are happy (like tonight we had a lovely family dinner and bonfire- I became so sad about everything and felt like life had no purpose anymore). I think of happy times and suddenly remember that things won't be like this for much longer. And I just start tearing up and pretend I'm tired and I leave to go cry and sob in the bathroom and then come back. I know this is not healthy and I cannot go on. So how do I tell my parents. I have a feeling they weren't planning on telling my sister and me for a while. We are going to Alaska on vacation for a week in a few days. And then randomly my dad told me a few months ago that he wanted to take just me on a special trip to Paris. They want to create happy memories this summer, but I feel like if they know I know that it won't be as happy. Please. I need help.
 
Oh and I know it is ALS because I saw my dad taking medicine and saw it was rilutek. And that night I googled it and realized what it meant and I had a complete breakdown. It was probably the worst day of my life so far. And then my mom left her email open one day and it said that the doctor in Boston confirmed the diagnosis of ALS.

And I'm sorry I haven't been back in a while. I've been processing all of my thoughts. Some days are better than others. Today was pretty bad. Especially since dad was very run down today and napped for hours and had trouble breathing/coughing a lot. Mom seemed very worried but didn't say anything.
 
Oh and for those of you wondering: I first found out about the ALS when i saw my dad taking medication and i later saw it to be rilutek. i later googled it, and i found out what it meant. i had a complete breakdown- probably one of the worst days of my life. soon after i saw an email that my mom left open and it said that the doctor in boston confirmed the diagnosis of ALS.

and I'm sorry i haven't been back in so long- i am trying to process everything and i am in denial about the whole thing. some days are better than others. but today was a bad day. i cried a lot. a whole lot. dad was very run down and napped a lot and had trouble breathing/was coughing a lot. he just wasn't himself. mom seemed very worried but didn't say anything.
 
I doubt that you letting them know you have read something about a d x of ALS will make things worse, as far as enjoying things. In fact, they may be relieved that you have found out. They, in turn, may be upset with themselves that they had not told you sooner, but that feeling will go away quickly.

Do you think your parents would want you keeping this inside, all the while that they are trying to make good memories for the family?!? I seriously doubt that!

I would still like to know exactly what you saw to lead you to the conclusion your dad has ALS. If you are afraid to approach them because you were "snooping," you will need to bite the bullet and tell them or you will be very miserable for a long time. Knowing how old your sister is would be helpful, also (that would determine how she should be approached, how much info should be given for her age).

By the way, I am going from experience, as I have a son that is 12.
 
Status
Not open for further replies.
Back
Top