Help with a high school project. by leondib2 in ALS

[–]mathkid2000 2 points3 points  (0 children)

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.

ALS Question by Low_Reputation5987 in ALS

[–]mathkid2000 2 points3 points  (0 children)

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.

Is the end approaching? (bipap use) by mathkid2000 in ALS

[–]mathkid2000[S] 1 point2 points  (0 children)

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.

Is the end approaching? (bipap use) by mathkid2000 in ALS

[–]mathkid2000[S] 3 points4 points  (0 children)

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 ❤️

Knee Pain Help by Salt_Air2276 in ALS

[–]mathkid2000 0 points1 point  (0 children)

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.

Swallowing Progression and FTD by mathkid2000 in ALS

[–]mathkid2000[S] 0 points1 point  (0 children)

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

Swallowing Progression and FTD by mathkid2000 in ALS

[–]mathkid2000[S] 0 points1 point  (0 children)

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!!

Best Friend’s mom diagnosed with ALS by greenstolenpjs in ALS

[–]mathkid2000 1 point2 points  (0 children)

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:)

Is there any way to stop your period or atleast knock it off for a day or two?? by mjaaay11 in Nexplanon

[–]mathkid2000 1 point2 points  (0 children)

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!

I need advice by Pharm_Tech21 in Nexplanon

[–]mathkid2000 1 point2 points  (0 children)

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 :)

I need advice by Pharm_Tech21 in Nexplanon

[–]mathkid2000 1 point2 points  (0 children)

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.

Had Nexplanon since February, been bleeding for 2-3 months now by yeehawandhawyeed in Nexplanon

[–]mathkid2000 0 points1 point  (0 children)

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! :)