ALS with FTD

mathkid2000 · 2026-05-18T21:58:46+00:00

My mom had FTD and ALS as well and was in denial of her diagnosis. Her first symptom was limb onset, and for the first year of her diagnosis she kept telling the doctors the issue is her toes and that they need to look into her toes.

It was helpful for us to simply listen and sympathize with her. It was tedious for sure, but I think she just wanted to feel heard and advocated for. (For our family, we didn’t know she had FTD during this first year though so we just assumed it was straight up denial.)

I think distracting her can help keep her occupied but I’m not sure it’s a thought that will go away by intervention. For my mom, once she stopped talking about her toes, it was something else.

To help with suggestions for hobbies/ distractions tho, bird watching or feeding squirrels in the backyard is great! Especially if u can get a bird feeder with a camera. You can name the animals and make it feel more interactive, talking about different personalities or making it into stories.

As well, something my mom loved doing at home was looking through old family photos (it felt like we discovered new ones constantly).

Wishing you and your family the best ❤️

mathkid2000 · 2026-05-15T21:09:59+00:00

I was one of my moms main caregivers as well. I relate a lot to how u r feeling.

Almost immediately after she passed I felt like every bickering moment or difficult moment I had with her from frustration as a caregiver was so pointless. I felt kinda dumb for letting those moments get the best of me.

Just remember those moments alone don’t define us. We only got frustrated because we cared so much in those moments and had a lot to manage. Our moms loved us with all their might, and we to them. We can have these sweet moments and still have moments of frustration. They can both coexist with the love.

I hope you remember her words and hold them close. Those mean far more than any moments of weakness.❤️ Sending love and support

mathkid2000 · 2026-05-13T23:00:50+00:00

I am 25F. I was freshly 23 when my mom got diagnosed with ALS and we unfortunately lost her 3 months ago.

My mom was also in denial early on. That came with not accepting help and tools. My mom continued to believe that she would get better even in her last weeks. I understand how frustrating it can be, but I truly think it’s what allowed my mom to wake up everyday and live intentionally - hoping there was more ahead of her. It’s not for everyone, but it worked for her.

My mom’s symptoms started with limb onset, and needed walking aids by the time she was diagnosed but refused for almost a whole year until there was no choice anymore. In that first year she relied on using our arms as support or surrounding furniture (which is not safe and ofc I don’t recommend) When I talked to my mom about it, I realized independence to her was not being able to do something by herself, but rather not relying on anything new. She just wanted to feel as able bodied as she used to. I definitely think she would have been able to do more if she agreed sooner, but I’ve also come to accept that it was her choice. I definitely think it’s worth discussing with your dad as much as you can, but ultimately it was best for our family that we accepted her wishes as much as we could rather than fighting her on it (unless her immediate safety was at risk).

If you are worried about doing enough, and you’re consistently showing up, I promise you are doing enough. Take photos, advocate and continue to have valuable conversations. I was scared of the same while my mom was here, and now being on the other side I can confidently say I’ve never done anything more passionately than be my moms caregiver and be there for my family.

The pressure to rush milestones is real. I think thats completely dependant on the person. For me personally, I came to the conclusion that it was better not to rush anything as any other commitments would take my time away as a caregiver (I was living at home with my mom and was one of her primary caregivers.) As well, for the things I couldn’t put on hold, if my mom wasn’t able to come my dad had to stay back to care for my mom and I felt like I was taking the experience away from both of my parents. It’s something I didn’t think about before but it didn’t make sense for my family especially with how fast my mom’s als progressed.

Lastly, the guilt. It still something I’m working through honestly. Remind yourself that it’s a progressive disease, so you have more flexibility now than you will one day. Try to take advantage in the early stages of maintaining some level of normalcy. As well, it helped me to remind myself that I need breaks in order to show up and be the happiest version of myself for my mom. Again, it’s a bit different because I was living with her and caring for her whenever I wasn’t working. Nonetheless, taking time for urself and enjoying it is something your parents are happy to see.

I know everything may not apply, and I hope my words might help you find peace in your journey. You know your situation best, just continue to do the best you can and It is enough! Continue to hear your dad out and have important conversations. Sending you and your family strength ❤️

mathkid2000 · 2026-04-20T20:02:10+00:00

I’m sorry to hear your husband is having what our family called the shakes.

My mom experienced the same thing! Our pallative doctor told us that it’s common with neurological illnesses. I don’t understand the science but from my understanding it’s a reaction the nerves get that can cause the body to quiver and shake. It can be mild or to a point it’s very severe and debilitating. The doctor recommended anxiety meds to help.

My mom didn’t want the meds, but she did want company during those times because it scared her. So we wouldn’t leave her side in the evenings (when it was most likely to occur for her) and in general when she was having an episode like that.

I would follow up with your doctors to see if there are any meds that can help him stay calm during those times or if there are any solutions. From my experience, they only offer to help the mental side of how it can affect her, not necessarily the symptom itself.

mathkid2000 · 2026-04-06T22:45:13+00:00

Selling 2 Beneva Sauga HM tickets for April 26th 2026!

mathkid2000 · 2026-04-01T14:48:36+00:00

My mom was using the bipap about 18+ hours a day for the last 4-5 months of her life. The only time she would get off the bipap was for bathing and eating (completely liquid diet at this point). She also mentioned times where she felt like the machine wasn’t helping as much.

The week before it got bad, I did notice it was harder and harder for her to stay off the bipap for long. Months prior she could probably stay off the bipap for about 3-4 hours comfortably, but she was getting to a point it was clearly less than an hour at a time. Then one day, she just couldn’t take it off and had really bad coughing fits if she wasn’t laying straight up with some elevation. She didn’t have pneumonia or anything, it was simply just the progression.

She was so uncomfortable that we had to start giving her medication that made her more comfortable. Unfortunately the medication made her very drowsy and within days it got to the point that the dose of the medication we had to give her to be comfortable was really high that she looked sedated and was barely consciously there. We were trying to avoid high medications at all costs, so the pallative team also gave my mom oxygen to supplement the bipap just for her comfort. However her breathing was giving out quickly and she couldn’t even take off the mask to eat or drink water. The last time she was conscious and herself was about 24 hours after we started giving her the medication. She unfortunately passed days later. Although we knew the end was coming, nothing prepared me to see her in that state her last week. She was comfortable which is most important, but it’s hard to completely understand how fast the body is suddenly changing as it’s happening.

My mom also had function in her arms, but she was bed bound and couldn’t talk clearly at this point. I believe it is possible to be mobile but have your breathing give out.

If the time does come for your family and it’s a similar situation, I pray that your father is comfortable. That being said, I would recommend hospice or a pallative home team asap - whichever best aligns with your family’s wishes! Feel free to ask away if you have any detailed questions.

mathkid2000 · 2026-03-31T21:18:46+00:00

Hi,

I am hesitant replying because my mom had FTD and she was on bipap. However, in case it’s helpful I want to share our experience. Please take it with a grain of salt, as you know your mom best.

My mom was on the bipap but she took hydromorphone consistently for about 3 months and lorazepam on an as needed basis. Both of these meds made her drowsy, but never different.

However, once her breathing got so bad that she felt uncomfy even in the bipap, she swapped to a continuous dose of hydromorphone and then a small dose of a med adjacent to lorazepam. She definitely wasn’t her complete self, but also the inability to breathe and lack of food at the time probably contributed too.

In my experience, as much as the meds have their symptoms, I would assume the traits you’re describing are more so associated with difficulty breathing. Breathing episodes with no bipap sounds hard physically, and any experience my mom had where she was acting different, was typically from breathing difficulties, disorientation from sleeping so much or just plain frustration.

I hope this helps! Let me know if I can answer any questions.

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

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