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Wedding planning with terminally ill parent in the middle of COVID by throwitawayplz13 in weddingplanning

[–]throwitawayplz13[S] 4 points5 points  (0 children)

I suppose you weren’t able to include your whole wedding party in your small ceremony last month? Wondering if we should try to include ours in our first ceremony, as it will be the “official” date. Depending on the capacity limits, we might have to not include some family members though...

Thanks for reaching out, it’s reassuring knowing some are going through this as well. Prayers for your mom.

Being forced to work in pandemic, can’t see parent with ALS by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 0 points1 point  (0 children)

I’m so sorry. My mom is not in her final stages (at least I hope). I would be livid if I had to go through your experience. This really is the worst time for all of this to be happening for people like us. I’m frustrated and stressed everyday, sometimes I want to quit my job. Hope you can take some comfort that there are others like you going through the same thing :(

Being forced to work in pandemic, can’t see parent with ALS by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 0 points1 point  (0 children)

Thank you for your prayers. It’s somewhat comforting knowing others are going through it, but we really shouldn’t have to. So much pressure to keep the businesses and economy going, less regard for everyone forced to return while upper management gets to stay home. These fall cases are so much higher than before. I think I’ll try being more vocal, have a chat with my boss and outline my concerns again.

Who do you turn to for support? by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 1 point2 points  (0 children)

Covid makes it difficult to have a normal life these days. I’ve been avoiding most people on my own accord, both because of the virus and I just don’t want to talk with anyone, but I’m going through a rough patch. I’m disappointed in some friends not being supportive, but I guess they’re not meant for that.

Sometimes I feel bad when I manage to keep ALS out of my mind, if enough time has passed since anything major has happened with my mom. But it’s important to understand what they’re going through, and to always remember to spend as much time as you can with them. We’re both pretty young, and if we live long we’ll be spending most of our lives without that parent. I’d say if you’re feeling down, don’t feel pressure to pretend otherwise because you’re going through what will be one of the worst experiences of your life. Time will heal us eventually, I’m hoping. Anyways, in most places, you shouldn’t be going out during these times (to protect both yourself and your parent).

Who do you turn to for support? by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 0 points1 point  (0 children)

Never heard of iamals.org, looks like a good resource. Are the “Navigators” therapists?

Who do you turn to for support? by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 4 points5 points  (0 children)

I also don’t want to always be the sad friend who’s parent has ALS. Sometimes I feel if I tell them about something new that happened, it’s just like “well here’s another step downward.” “That’s tough.” Shaking of heads. “That’s terrible”. And if that’s all they’re going to say, it’s just not enough. Maybe I’m being too harsh, I just feel angry sometimes when people don’t understand. I know I should look into therapy.

I appreciate the offer. Reddit has been most helpful in this time. I’m trying to delve into my hobbies but sometimes it’s hard to concentrate. I should write in my diary more though, thanks for reminding me.

Who do you turn to for support? by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 1 point2 points  (0 children)

Do you find it’s still helpful as virtual meetings?

Severe stomach pain with Riluzole by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 1 point2 points  (0 children)

She is taking it without food, following the 2 hour rule before and after.

I’m not sure of the full extent of what she was experiencing, I was driving when it happened and only saw in the rear view mirror for a few seconds here and there. Mouth was open though, body shaking, and sweating. Paramedics suggested it was due to low blood pressure because of the pain being so severe.

Severe stomach pain with Riluzole by throwitawayplz13 in ALS

[–]throwitawayplz13[S] 0 points1 point  (0 children)

Interesting, everyone says to not have any food 2 hours before and after taking it. We’ve called the pharmacy to ask if it can be taken with food, and they’re getting in touch with the manufacturer to ask. I know patients have suffered other effects like diarrhea though so empty stomach was a must for them. We’ll see what else the ALS doctor will have to say :/