In need of advice

[katbat]

My mother was diagnosed with ALS two days ago and I have been struggling to think about anything but her diagnosis.

We found it to be sporadic so that is about the only good news from this situation. She has been dealing with symptoms (loss of clear speech, hands and legs cramping) for about 2 years now. Since diagnosed, the doctors say she is has a slow progression.

I am 15 almost 16 and I feel very lost at the moment. These two years have felt like i’ve already lost a big portion of the mother I used to have. I’ve probably cried a total of 10 hours after getting the news and I keep getting waves of grief even though shes still in the early stages. It hurts so much knowing its only downhill from here and I dont know how I am going to stay positive. I just need any advice or support right now.

 

[lgelb]

Sorry to hear about your mom, Kat. But whether the next years are all downhill or not is largely a "mind over matter" thing. If you're positive, she'll be more positive, and vice versa. There is still plenty of life left for all of you, including her, if you want it, and grab it. We're not promised tomorrow, but it probably won't be the day she dies.

So pack old and new people, pursuits, places, experiences, and just being together into the days to come and they will stay with you your life long. You don't have to be positive every second. No one can or should be. You'll be fearful, angry, and want to check out at times. So will she. Any of you can do counseling if you need it -- there's no shame in that. If it's not being handled another way, I would certainly let your favorite teacher know where things stand when you are ready, and she can let the staff know. Same with a friend or two, who can tell others. You don't have to go this alone.

You just have to know that when your mom is gone, you won't regret the things you did -- you'll regret what you didn't. With slow progression, it is also very possible that new treatments can slow her progression more, as well, though you don't want to chase miracle cures or anything like that. You can help her keep that balance between living her best life and when the time comes, dying her best death.

True, her mobility will become more limited and she will likely die of ALS. We all die of something. What comes between finding out what that "something" is, and when it happens, is more under our control than you might think.

Best,
Laurie

 

[Nikki J]

I am very sorry. My family is FALS but everyone was either younger or older than you at their parent’s diagnosis. I do have a friend though who has 2 kids that were around your age at diagnosis. It is hard and very unfair

your mom is still your mom and what this means to you is probably the hardest part for her.

of course you are devastated. I cried for days at each family diagnosis especially my mother and sister. It will get better.

Laurie is right your teachers and any other adults you work with ( coaches etc) do need to know. How and when you tell friends is up to you. Don’t be surprised if people don’t really know what ALS is even now.

don’t be afraid to ask for counseling. Having someone to talk to about this can be incredibly helpful and you can say things you might not want to share with your family.

 

[katbat]

Thank you very much for the reply Laurie. Spending time with my mother these past couple days has actually been very difficult for me, and ive found myself avoiding being near her in fear i will break down and make her feel worse. None of this is easy but I have hope knowing I am not alone.

 

[lgelb]

Your mom won't mind if you shed some tears, and probably will shed her own. That's OK. She still needs you around her way more than she needs Pollyanna.

You can talk about your feelings together when either of you wants to, and I would tell her that you are ready to hear whatever she wants to say, whenever, but also it helps just to do regular things, whether it's watching a movie, the dishes, music, "how was school," everything you do.

As Nikki says, she is probably as afraid about what this means for you as herself. By being honest with each other, and just being there, everyone in your family can make this easier for each other the whole way through. When it's time to talk about the future, a good past and present helps a lot.

 

[PALSdottir]

I am so, so sorry. We're wishing you all the support and hugs.

When my family got the news of my dad, one of the positive things we did was to immediately make plans for things to look forward to. My mom and dad immediately took the trips they'd planned to take in their retirement - both abroad and across the US. Not all of those plans worked out, but they did make some really wonderful memories in 2019. My family is sprawled across several states and we made family visits and family events a more regular and cherished priority.

We'd also heard some families will start making (more) family videos and we tried that too for a bit - My dad and I have a video of us talking about past pets, past concerts, etc. There's a website/app called Tribute.co and my siblings and I made a video of us for Father's Day, There's also a website/app called Cameo where a (usually minor) celebrity makes a video per your request and payment - my siblings and I did this for my dad's birthday and my dad and I recorded a response video that the celebrity (a sports announcer) actually saw. Making lots of videos isn't for everyone, but it can be fun and memorable.

It personally helped me soon after the news to read book about ALS, both clinical and memoirs. I'm pretty sure I'm the only one in my family who did this - I'm just more bookish - but it did help me feel a little more knowledgeable and grounded, so I'm passing that on for what it's worth. This forum has also been incredibly helpful and supportive.

So much about all this is all so impossibly hard and sad, but there can still be lots of moments of light, and good things to come too. I am looking forward to these holidays for the valuable time and reunion. Wishing you happy holidays and wishing your family lots of love and time to enjoy.

 

[wmilo]

Kat, I'm so sorry to hear of your mom's diagnosis. It has helped me to know that, as Laurie said, "We all die of something", but I am at a different stage of life than you and your mom. There are many ways to think about your situation and you will have to find one that works for you, as will your mom.

Your health insurance may offer the ability to receive some form of counseling, and I encourage you to consider taking advantage of it. You are in rough waters to navigate by yourself, and there is no shame or weakness or any other reason not to get some help working through your thoughts and feelings.

Best,

 

[Bestfriends14]

Oh, Kat, I'm so sorry about your mum's diagnosis. Please don't avoid your mum in fear of breaking down in front of her. She knows you are hurting, and I'm sure she wouldn't mind sharing in your grief.

Have you thought about speaking to your school counselor to try to talk about how you are feeling? It might offer you some catharsis to just have good cry in front of a professionally trained individual. other than that, I don't have a whole lot of sage advice for you, but my heart truly goes out to you. This is a lot for anyone to deal with, but for one your age, this seems a particularly burdensome load to carry.

Hugs to you, Kat.

 

[em9988]

I wouldn't say we're in the same situation since I'm assuming since you're 15, your mom should be quite young? but I'm 30 this year and I kind of had to move back home and put my life in hold for now. My mom had symptoms since late 2020 but was diagnosed this summer. My moms biggest fear is not being there to see my life unfold, or being there to see her grandkids grow up, so I thought of an idea to get her a vlogging camera while her hands and speech still work so she can document her thoughts and get some more videos of us together.

I can tell that her being able to record videos for us and leave messages for me or my future family gives her some more comfort regarding the future. So yeah if that's one of your mom's concerns, I would suggest getting her something like that.

 

[lisatsmith13]

Since she has been diagnosed, she can start treatment to slow the progression of the disease. I was diagnosed with ALS in June after symptoms for at least 6 months. I was immediately started on Riluzole and have since started Radicava infusions. My doctor got a home health care agency involved to do various services. Plus, there are a couple of meds that should be coming out in a few months that may do even more. Get all the assistance you can from both agencies and family members. May God be with you and your mom.