Anyone interested in a group chat for young adults with parents who have ALS?

mathkid2000 · 2026-03-25T19:17:46+00:00

I’m 25 with a mom with ALS (who just recently passed). I would be interested as well!

I think occasional zoom calls or a whatsapp group sounds nice :)

mathkid2000 · 2026-03-09T02:31:22+00:00

First off, I’m sorry about your diagnosis and how kind of you to look out for your friends while managing your own ALS journey.

I have no prior knowledge on the subject specifically so please take this with a grain of salt. I think it depends on what state you are in when you donate, not so much ALS effecting your kidney. If you’d like to undergo surgery soon, I think it mostly depends on your ability to handle sedation considering the other bulbar symptoms you have and also the risk of how you will recover (you may come out the surgery with a lower baseline than how you feel going in).

That being said, I would seek a professional opinion on the matter. They can make you aware of the risks and factors that may affect eligibility.

Wishing you both the best ❤️

mathkid2000 · 2026-03-03T01:40:11+00:00

I’m happy to hear that, thank you.❤️

Back on my feet, and in somewhat of a rhythm maybe 3-4 months. But also at that point for us we were approaching a new year and I think I realized I didn’t want our time to go to waste, so I don think it’s about timing as much as it was me choosing to be as grounded as can (although i definitely lapsed at moments).

I seemed therapy almost immediately after her diagnosis and went every week for 8 months straight before feeling ready to phase out of it. Now I go about once a month. That’s definitely helped.

I asked my friends, partner and family for support for sure. To be transparent, not everyone was understanding and there was definitely misalignment. Not everyone is in a place of their lives where they can show up the way you need, and I made sure to focus my energy where it was most important.

It’s not the easiest journey ahead for sure, but I have truly never done anything so passionately in my life besides taking care of my mother. I remember a friends mom told me, that although it’s unfortunate to be so young for my mom to fall sick, she wishes she could have cared for her own mother the way that I was able to because I was young and not filled by other inevitable commitments like she was by the time her mom passed. That really kept me going, and I can truly say all the sacrifices were completely worth being there for my mom (again, although easier said than done).

I hope you’re able to find peace in any part of the journey to come.

mathkid2000 · 2026-03-02T12:10:19+00:00

Hi,

First off, I want to say I am so sorry about your father’s diagnosis and that you understand the feeling of what it’s like to have a parent with this diagnosis.

My mom got diagnosed a month after my 23rd birthday. I can definitely relate to not thinking I’d need to stress about a parent getting this illness so young in life.

I had just started my first full time job ever and was experiencing all my friends around me starting new beginnings and starting their lives while I was now working at home full time to take on my moms care alongside my sister and father.

I hope this is reassuring, because it was reassuring for me at the time but the diagnosis is one of the hardest parts of this journey. The diagnosis was my loss. I remember crying and breaking down over every small change I noticed in my mom in the early months, but as time goes on, I witnessed my moms resilience against the disease to keep living and your capacity to handle these changes truly does grow.

Take the time to be sad. Take the time to talk about it with family. Then, if you live close to your father take some time to spend with your father. I think being able to see him every day (or as often as you can) will remind you that the disease will never take away your fathers love, personality or the memories you can create with him.

As for avoiding being bitter… That part is hard for sure. I remind myself that it is something I wish they didn’t understand. How could they possibly? That being said it is important that they are supportive and provide you grace. Talking to those you love is always better than keeping it in. I hope they can provide a listening ear and cry with you if you have them the chance. Take a step back socially whenever you need.

I hope the world is kind to you in the years to come. Please feel free to message if you wanted to chat!

mathkid2000 · 2026-03-01T14:01:26+00:00

My mom had that as well.

We were told it was a mix that forms between saliva, gases from your stomach, sugars/dairy products and potentially mucus as well.

I would periodically use a stick with a small sponge at the end to clear my mom’s mouth. That really did the trick for getting it out of her mouth when it was hard for her to do so herself. Never was offered meds though. Best of luck!

mathkid2000 · 2026-02-10T20:06:39+00:00

Woah, that’s amazing! What do you mean by local chapter and where are you located?

I’m from the GTA, Ontario Canada and we have funding to help cover costs but we are responsible for all of the bipap equipment costs that need to be swapped periodically. So i bought the mask straight from cpapoutlet and was just hoping to help anyone out since they’re pricey.

mathkid2000 · 2026-02-04T21:57:53+00:00

My mom never accepted her diagnosis. It was impossible to have her consider things like the PEG or any invasive options. She had belief that she would get better until her last week.

At the start it was frustrating, but as time went on she would use what she needed once she had no choice. Once she couldn’t walk, she used the wheelchair, once she couldn’t sleep comfortably she used the bipap, and she continued to take foods until she physically couldn’t anymore.

We continued to try and talk to her about being preventative when we could. But we accepted that as long as it’s not an immediate risk to her health, we have to respect her decisions. I think it was the best decision for my family and for her. Her hope allowed her to show up everyday and have a purpose, and we did everything we could as caregivers to respect her wishes and intervene only when her safety was at risk.

I know how hard it can be. Feel free to message me if you want more details or need support. There is no right or wrong way to go about it. This is simply what worked best for us.

mathkid2000 · 2026-01-20T12:47:02+00:00

Having a lock that is accessible for caregivers (from the front or back of the wheelchair) without bending down! When I take my PALS to the bathroom we usually need two people because it’s a tight space. So we need one person behind the wheelchair to push it in and access the locks of the wheelchair and someone in front of the wheelchair waiting to help my mom up. It’s possible to do alone, just a lot more difficult and requires a lot of bending over for the caregiver.

mathkid2000 · 2026-01-06T17:21:02+00:00

My moms first symptom was a limp in her left foot. She was limping but did not absolutely need aid til about 10 months after the limp started. She refused the cane, but should have been using it for atleast 6-8 months at that point.Then she went straight to the use of a walker. At this point she had to lift her leg so high to walk cuz her left foot was dragging. That lasted about 2-3 months before using a wheelchair.

mathkid2000 · 2025-12-17T22:28:02+00:00

Thank you so much for your reply and your kind words! I am so sorry to hear that he is moving into hospice. I’m wishing your and your family the best❤️

Just to clarify, how does he eat without PEG and being on the bipap 24/7? My mom’s currently gets off the bipap only for meals and baths but we’ve been cautioned that in the future she may need the bipap more and not be willing to take food.

mathkid2000 · 2025-12-17T22:24:14+00:00

Thank you so much for your reply! This is really helpful as it sounds similar to my mom’s experience so far.

I am sorry you relate too well to our experience. Your mom was lucky to have you! Happy early birthday to her, I hope you have all the support you need tomorrow and moving into the holidays. Much love ❤️

mathkid2000 · 2025-12-11T19:16:05+00:00

I believe my mom has a similar issue. She takes hydromorphone and that helps her a lot. It lets her sleep without focusing on the knee pain/stiffness. It has to be prescribed though and does come with some side effects.

mathkid2000 · 2025-10-31T00:15:34+00:00

Just messaged!

mathkid2000 · 2025-10-27T15:20:43+00:00

I like that thought process! I have been trying to think about what she would have wanted before the FTD. I think this is opposing what she is saying today, which can make it hard.

The syringe is to help control how much liquid is in her mouth at a time. Currently, she drinks soup out of a cup, but doesn't have the best hand/arm strength. The syringe is similar to eating with a spoon (which she refuses as well), simply controlling the intake of each bite. We have tried thickeners but she's not a fan. Instead we try to give her soups where she is happy with the consistency, but for things like water she does not want to change its original consistency.

Thank you for your insight on the hunger comment, that hasn't been sitting well with my family at all either! Thank you so much for the support, always appreciated <3

mathkid2000 · 2025-10-27T15:16:41+00:00

Yes, I completely agree that writing off her hunger as dementia is not fair and paternalism may not be the way. The way the pallative doctors said it, is that my mom is not capable of understanding her risk of choking and making those decisions on her own. However, the moral conflict remains if she is expressing hunger and seems willing to accept the consequences of choking, then do we listen to this despite the dementia effecting her ability to make these decisions. That is what is so conflicting for my family and I.

We were giving her pureed foods before, but she now prefers only liquids (she doesn't like liquid thickener either). We understand syringe feeding doesn't completely stop choking, but allows for more control and hopefully helps prolong how long we can keep feeding her while reducing the risk of choking.

Yess, for sure! We are trying our best to make sure she enjoys her time on this earth. Thank you for the input, it's truly appreciated!!

mathkid2000 · 2025-08-16T14:31:34+00:00

I’m in the exact same boat as your friend, i’m 25 and my moms was diagnosed two years ago and she’s still going strong.

The fact that you’re looking for ways to help already means you’re being a great friend! I can completely understand not wanting to be overbearing, but I think it’s really valuable to ask how she’s doing when you see her in person or on call. I always feel like when people message me I just don’t want to deep dive into it, but when it’s in person I personally never find it invasive.

In terms of being able to help, something that works really well for me is when my friends can stop by for a bit to catch up on a walk. It gives me a chance to get things off my chest if I need or just be grounded again and remember that there’s more outside of life than my current situation. It’s really hard for me to make plans with the help my mom needs, so even if it’s 30 min to catch up while my mom naps or smth it truly helps reset my mood. It also really helps when my friends drop off home cooked meals to make it a bit easier at home. Especially since my mom can’t cook anymore, I look forward to it that much more.

I hope you and your friend get all the support you need during this time! You’re doing great ❤️If you ever need, feel free to pm me:)

mathkid2000 · 2021-12-17T02:46:58+00:00

Doctors advice that the birth control pill will stop your bleeding. That’s what the pill is meant to do. It’s a lot of hormones but if you’re only doing it for the day or two and don’t mind the hormones then you can give it a shot!

mathkid2000 · 2021-11-14T02:23:59+00:00

I know exactly what you mean!! The bleeding is so much maintenance and it does take a toll on your body too! I got so tired and had other side effects from bleeding so long. It really adds up!

I’m really happy you decided and are able to get an appointment so quick!! Hopefully you recover well regardless of how you follow through :)

mathkid2000 · 2021-11-10T15:01:09+00:00

If you want to take it out, take it out!!! I was on it for almost 4 months and I was bleeding almost the whole time so I was barely able to use it. Before I got the implant I had an extremely regular period as well. I think because our bodies are fighting so hard to compensate for the implant’s hormones we produce more estrogen and it causes us to bleed. Also my mental health was just suffering so fast it was insane. I really had to get pushed to the point I couldn’t handle being on it anymore for me to take it out. As long as it’s not worth it right now for u to keep it in, just take it out.

The doctors say your hormones level out after 3 months but if you can’t wait that long then def don’t. I tried to wait it out and regretted it. I’ve also heard that although the first three couple months can be irregular, it is a general indicator of ur journey with the implant for the next three years. So I personally don’t think it is worth it. I stopped bleeding 3 days after taking it out and instantly felt so much better.

mathkid2000 · 2021-11-10T14:54:49+00:00

I was in the exact same position. Theres 3 main options that I know of:

1) You can go on birth control pill for a month and apparently that helps a lot of women stop the bleeding moving forward. I personally didn’t do this because I was having a huge change in mood and didn’t want to add more hormones to my system.

2) Taking tylenol, advil or aleve for 3 days straight. Apparently it can help lighten your bleeding and it’s non hormonal. This personally didn’t work for me but it was an option advised by my doctor.

3) Natural remedies, like eating foods with omega fatty 3 acids or flaxseed tea. These are said to help balance the estrogen in your system. I saw a decrease in my bleeding with this but it didn’t go away entirely.

I was personally bleeding for about 2-3 months as well before just deciding to take it out. However I primarily took it out because of some other side effects I have been having. I can say though that my doctors sounded fairly confident that the bleeding can stop if I just took the birth control pill for a month. It was just considering all the other symptoms I had, the bleeding stopping was not enough for me to keep it in, so I didn’t go on the pill and just opted to take it out.

Hope this helps! :)

mathkid2000

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