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sdolphin63

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I first found out when i saw my dad's medication. my mom told me to go look for something in her room, but i couldn't find it. so as i was searching for it (a book) i went into my dads nightstand and saw a bottle of pills- and it said it was rilutek. i was curious so i googled what it was- and when i realized it was for ALS was when i completely broke down. it was probably one of the worst days of my life (so far at least). a few days later, when i went on my moms computer to look up travel information i saw an email she left open to one of her best friends. very short, but i will forever remember the words that she send her: "hard day with confirmation of ALS in boston."
 

Susan10

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i hope you have taken the good advice here and talked to your mom.
 

HelenL

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Good luck honey, and remember to enjoy your life too. Your Dad is not planning on going anywhere soon, and there are some good clinical trials coming to Boston. But do talk to your parents, you can't hide this from them, and you don't want them to worry about why you're secretly crying. Hugs...
 

Miss

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I am so sorry you found out that way. We told my son (he was 15 at the time) that ALS was on the table because we knew that if our son saw the rilutek, he would google it. Hearing your story, I am so glad that we made that decision. I agree with everyone else, you need to talk to your parents.
 

notme

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Please talk to your parents. They are likely stressed trying to keep it from you--letting them know you know may well put them at ease.

Remember, ALS is bad, yes...I won't lie to you...but many live with it for years---and they are learning more about how to treat it all the time. Enjoy each day with your family.

Hugs hon
 

AKjo

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It sounds like you have a good relationship with your parents. That's a good start. It is possible they will feel that you have intruded into their privacy (be ready to apologize) but I agree with CJ that they will be relieved that you know. It cannot be easy for them to tiptoe around trying to keep this huge secret, but they are trying to protect you. There will be times when they need to support you, but probably more when YOU will be supportive to THEM. They are still reeling from finding out themselves.

How about something like this: "Mom, Dad, I really don't know how to start this conversation, but when I was looking for that book for you the other day, I saw Dad's pill bottle. I was curious about what it was, so googled it and learned about ALS. I am really scared about what I read, and need to know more about all this. I wasn't trying to snoop; I'm sorry if you think I did, but it is driving me crazy to think about Dad being sick and pretending that I don't know. Please talk to me."

I'm sorry ALS has entered your family - you have probably read on here before that you now need to learn to LIVE with ALS. Cherish your time together. Enjoy your trip to Alaska! It is a beautiful state. What parts are you visiting?

Good luck, and be sure to let us know how things are going.
 

sdolphin63

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One of the hardest parts for me about this whole thing is that my dad and I do not exactly have the best relationship. and it has nothing to do with him. it is all me. its probably common among all teenage girls to think their dad is incredibly annoying with everything he says and does, and that he just cant do anything right. that is how i feel about him sometimes. he is always so happy and positive, and i am generally the "glass if half empty" kind of person. that is what a lot of our arguments are about- i need to be "happier." the worst was like 6 months ago when school and gymnastics and everything was very stressful for me, but now we are on pretty good terms. i am trying extra hard now though, especially since i found out about this diagnosis. but sometimes i am just so annoyed with some of the things he does, like the little things such as talking in third person (we are not 3 years old...) and asking really obvious questions that he knows the answer too but just doesnt feel like thinking about. it is always me that starts the arguments, and i am always 100% to blame. it is just hard sometimes for me and i take it out on him. i know i must sound like a terrible person and i feel so incredibly bad. i used to write diaries and talk about how much he annoyed me and how things are more peaceful and better when he is gone away on business or something...i only wish i could take those things back. i need to enjoy and appreciate what time there is left.

and one of the reasons the sadness has gotten so bad with me is because i feel like i do not deserve to be happy and healthy when my dad is such a great guy but he is so sick...i think about how i should not be able to be happy. i lose my appetite completely whenever i am thinking about my dad or anything that will make me sad- like at dinner a lot i have to force myself to even eat a bite of chicken. i always have associated food with happiness since i love food so much, especially snacking (which i cant seem to do anymore..), but now i just always feel empty inside emotionally.

anyways, i get what everyone is saying about telling my parents that i know about my dad. and i will. when the time is right. i know it will need to be soon. i randomly broke out crying in the car yesterday with my mom. i told her i was just really tired. maybe i can find the time at some point in alaska (we are going to juneau, skagway, tracy arm, and then victoria bc, then back to seattle for 2 days).

oh ok but about ALS. so there are new clinical trials and studies coming soon? do they look to be promising? dad's cough was awful bad today, he insists he's fine to me even though mom seems worried. i believe he would have bulbar onset ALS due to the cough and messed up speech sometimes. other than that there are no symptoms though- no muscle twitches or anything (that i have noticed at least). isnt this the most rapidly progressing kind? and are the treatments any good that are coming up?

Sarah
 

sadiemae

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You are a wonderful daughter. All teenagers have similar feelings.
 
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ndavies

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Hi Sarah,

I'm the Care Services Coordinator for Maine for the Northern New England Chapter of the ALS Assoc. and I live in Windham. I'd love it if you would give me a call. My number here in the office is 894-5478 but I'm often out making home visits or at support group meetings, etc. so I'll give you my cell number as well. It's 272-2990.

I see a lot of people here in Maine with ALS and some of the folks that were diagnosed when I started this job 6 years ago are still here and doing pretty well so it's hard to say just how any one person will progress. I even know people who have had ALS for 20 years and are still alive. It sounds like your father is doing well if you hadn't noticed any symptoms before stumbling across his medication.

Often parents are a little slow to tell their kids because they don't want to upset them but I doubt that they will be angry with you for knowing, especially given the circumstances of your finding out. They very likely may even feel some relief that they don't have to think of a way to tell you.

Anyway, we can talk about that when you call. If you get my voice mail, just leave me a message and I can get back to you. I need to go up to Augusta tonight for a while but you can give me a try anyway and I'll answer if I can.

I'm looking forward to hearing from you.

Nell
 

HelenL

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ndavies, good idea, but you shouldn't give out your cell number on a public forum... you may want to try to edit that, or ask David to remove that part.

I was going to suggest talking to a guidance counselor at school, they may be available already, so you can have a trusted adult to talk to.
 

sadiemae

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ndavies

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You're right. Who is David and how do I ask him to remove my #?
 

sadiemae

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Let's let the professionals handle this situation. If it is for real, they will find her! HUGS Lori
 
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pscheffel

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Sarah, my heart goes out to you sweetheart. You have so much going on in your life, 15 years old is so very young. Being a teenage girl is hard enough, let alone dealing with a diagnosis such as ALS. You must know the relief you would feel and your parents would feel, when you tell them you know. Once you can mourn as a family about your Dad's diagnosis, you will be able to move on and enjoy the time left. I will not lie, there will be good days and bad days ahead.
I was devastated when my Mom was diagnosed, it was such a hard day. I could not imagine feeling this pain alone and not sharing it. I am so glad you have come to this site for guidance. Have you thought of telling your Mom first?
As the others have said, ALS affects everyone differently. Remember take care of yourself and provide as much support as you can.
Hugs to you,
Patty
 

sdolphin63

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Thank you Neil for reaching out to me. I'm sorry I haven't responded, we just got back from Alaska last night. Hopefully I'll give you a call tomorrow sometime. My parents are actually going down to Boston for an appointment for my dad my mom just told me. When I do call you though I need it to be totally confidential. I can't have my parents find out I know before I tell them/they tell me. That would be even worse than me knowing and not telling them. So thank you. We had a lovely trip and I am going to remember it all my life- I just wish those times could last forever. I will call you at some point- thank you
 
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