Recent content by Doing My Best

I would like to respond to the discussion between Laurie and Oldgeek about ventilator settings. I would suggest that even if you rely primarily on respiratory therapists or other professionals to manage your settings, it's a good idea to become familiar with them yourself as caregiver (or as...

Sea Gunny, that's Pico de Gallo that you want! Glad you're doing some decorating. I have various kids and family coming so I am trying to make it festive, but when I put on some Christmas music while I was decorating the tree, it made me burst into tears. That line "someday soon, we all will to...

SeaGunny, I'm so sorry. CALS do need a lot of support and when the people you're relying on don't come through for you, as in your story, it's devastating. You gave your all to take care of your wife and I think it's wonderful that you are going to advocate to help other PALS and CALS get the...

Marnes, my heart breaks for all you're going through. It may seem impossible, but I do believe you'll come out the other side and have a life, not without lingering grief for your true love, but some new kind of life that may bring you new sources of fulfillment eventually, maybe as your...

My husband had good results combining Lexapro and Ativan.

CanyonLisa, you could also reach out to the ALS Association in the Seattle area. Most of the chapters have loaner closets with equipment they will give you for free for however long you need it - ramps, shower chairs, etc.

My husband was also on Xanax and Lexapro and they helped a lot. He was taking Xanax 3x/day and I really noticed if he missed the mid-day dose. It didn't make him too sleepy, it just lifted his mood and calmed him. I'm all for whatever helps make it easier for PALS to enjoy life to the greatest...

Marnes, thank you, and my heart goes out to you. I hope you can take care of yourself and be taken care of by others as you get back on your feet. Sending loving thoughts and hugs

Hey all, I became a past CALS Tuesday night, October 24, when my husband Steve died very unexpectedly after a traumatic 48-hour stretch that started with an ambulance trip to the ER Sunday night. I don't have the energy to get into everything but I do think there are some things I wish I'd...

I've had good luck with Care.com. Most applicants have been well qualified and I have hired three for various shifts, all of them now working for me regularly for the past 2 to 6 months. They've all worked out well. I think it's a good idea to be very specific in your ad about what the...

Becky, just reporting back that Silverts was a good suggestion and we've gotten several kinds of shirts from there which have made getting dressed and undressed easier. I also cut a bunch of t-shirts down the back to use as sleep shirts, which can just be put on from the front and left tucked in...

Wise words, Mary. I have to confess the burnout is getting me down lately. Diagnosis was in Feb. 2020 and although I'm grateful for relatively slow progression, I am very, very tired and, I admit, I feel like my life has been hijacked and there are times when I resent it. My PALS has been quite...

Hi Eva, I'm so sorry your father is experiencing this. I don't have any special insights, but it doesn't sound normal to me. My husband got a g-tube placed by IR in December and his only problems have been occasional irritation around the stoma and ongoing, intermittent digestive problems (not...

I agree with Laurie it's important to start on this quickly. I would also suggest you ask your local ALSA to come out and look at the house and give you suggestions for the remodel/bathroom addition. I had already paid for some preliminary designs when it occurred to me that ALS might have...

My PALS has an alternating air pressure mattress-topper over a standard mattress and it seems to be working well for him. Not very expensive, either. They have them on Amazon. His is the Vaunn Cloud Air.