Recent content by IslandL8dy

I have a power wheelchair called the Go Chair by Pride. It breaks down into four pieces for quick disassembly / reassembly for travel. The heaviest individual piece is about 38 pounds. (Or is it 32?) If you’re like my sister, you will be a little winded after loading all four pieces in the...

Update: The Motor Neuron Unit (turns out it’s actually called the ALS Clinic) just called to schedule me! I’ll be seen in just a few weeks, no waiting for diagnostics. All because of my neurologist’s expediting the process and the advice I received here. Thanks, everybody. :)

Please try to avoid thinking about the technical and logistical confusion that happened. That’s the road to madness, and it’ll just add to your suffering. You don’t need that. What you do need is breathing space to grieve your loss and commune with family. You love your brother and he loved...

Thank you, @lisa g It helps to hear about others’ experiences. I screwed up my nerve and took the dose of the medication tonight. It turns out, it’s wonderful. It’s almost like how things used to be for me. Very happy. @Nikki J , you mentioned your sister could adjust according to what...

@rmt Good to know! That’s exactly the med, and I’d been avoiding trying it because I hate dry mouth. Also, dry mouth = dental issues for me. But I also don’t like this leakage. I literally wake up in the night dabbing. Thank you.

Thanks, Laurie. I’m already having a bit of trouble with over-salivating as it stands. I’m afraid of how that would work with the mask. My neuro prescribed me something for it but we haven’t started that up yet. Don’t know how effective the med will be. But I suppose if I can use the one...

I’m so overwhelmed with gratitude to everyone here. This is feeling more like something like I can navigate. Thank you so much, @Nikki J , @rmt , @Wilson2009 , @affected , @KimT Also, with a clearer understanding, I think I’m in a better headspace. I reached out to my neurologist...

Thank you, @rmt . I admit I don’t know where to start. Well, I suppose first step would be getting a copy of my DD-214, which I lost many moons ago. What is a PVA?

Thank you, @Nikki J , that is very valuable information about the VA and especially TUDCA and Amylyx. Those sound like the very type of thing he wants to sink his teeth into. I will look them up.

@lgelb Right now his words are along the lines of how I need to fight this tooth and nail and stick around as long as I can. And when I show any resistance, he just falls apart. I’ve never seen him like this before and I can’t bear it. I understand now why some cancer patients don’t tell...

Oh, no, what a rollercoaster. And after all that your family has been through. I’m so sorry you received this bizarre curveball. Virtual hug to you.

@affected Thank you, you bring up a good point. I want to protect my loved ones throughout this (it’s really all I want), and I realize it would haunt them to watch me struggle with breathing. It already does, and I’m not even bed-bound. I’ll have to really think about that. Will change out...

TippiLeigh, Oh, your father. That’s the thing. Your father has already lost so much, (your three siblings! I’m so sorry!) and you’re downplaying your situation. I get it. He’s an 80 year-old man who has out-lived almost his entire family. My heart goes out to you. As others have said, I...

Thank you, Kim T. Can’t imagine living with this disease in this day and age with no microwave or wi-fi! I do have a power wheelchair now, but could probably benefit from a good community like the one you mentioned.

Nkki J, That’s good to know about Riz! Maybe that could tap the breaks, at least. I’m loathe to mention specific symptoms because I get that a lot of people come to this forum with ALS anxieties (believing they have ALS based on minimal symptoms) or even mental illness. It would just be...