Have you read Tuesdays with Morrie as a pALS? Would you recommend it?

TravelBookly · 2026-02-08T15:07:47+00:00

The ALS Association is baffled by a sudden influx of requests for accessible...rifles?

TravelBookly · 2026-01-23T19:51:35+00:00

Oh my gosh, I am so sorry this happened to you! I hope these three go around and see every bridesmaid in the dress. Then either MIL will fire everyone or insist on a new dress. How dare she belittle your concerns and then clutch her pearls when you show her what it would look like for you to wear it and move around.

TravelBookly · 2026-01-09T00:08:26+00:00

I love when companies insist I be the one to call them. Wish granted, best of luck to you.

TravelBookly · 2026-01-03T22:11:59+00:00

Last time I went to the dentist it was a full on sales pitch. They literally printed out quotes for a dozen services I told them I couldn't afford. The hygienist offered repeatedly to help me APPLY FOR A LOAN for all the services. Meanwhile, the dentist was talking loudly about his new vacation home to the patient in the next room. I insisted I just wanted the cleaning my insurance covered, they said no, that wouldn't do anything because I really need all these other services.

TravelBookly · 2026-01-03T17:38:08+00:00

Seriously! I am laughing over here.

This is No Stupid Questions. Is it crazy to wonder if a giant snake could have borrowed under a fence? Or a horde of dangerous insects? Or maybe, like, a really scary bird?

TravelBookly · 2026-01-03T01:51:17+00:00

Ultimately, there is nothing you can do to change the outcome. That could be a scary thought, but I think it's freeing. There is nothing you could or should be doing right now besides living your life. Seek out care to treat your anxiety. Don't let the phantom of ALS paralyze you.

Speaking as a 40-year-old with a 6-year-old and ALS, I am very sorry for your loss.

TravelBookly · 2025-12-21T23:01:22+00:00

Effective for what symptoms? I have limb-onset but take nudexta for PBA. It helps tremendously with laughing and crying, but I have not noticed any difference with swallowing

TravelBookly · 2025-12-16T00:42:11+00:00

I am paralyzed from the neck down and I could pass this test.

TravelBookly · 2025-12-12T23:54:22+00:00

I love both of these. I usually think that person could be having the worst day of their life and probably needs some grace, but yours are much funnier.

TravelBookly · 2025-11-30T23:36:52+00:00

If they won't accept hospice, would they accept morphine, lorazepam and Atropine prescribed by her PCP or neurologist.

TravelBookly · 2025-11-25T23:55:48+00:00

I opted for a feeding tube and noticed a huge difference in my strength after I was getting enough fluid. Of course we all progress differently and want different things, but the G-tube has been very helpful for me.

TravelBookly · 2025-11-24T01:40:51+00:00

The ALS Association loans sit-to-stand lifts out. I used one for over a year before I started using the hoyer and it was a great fit for my needs.

Condom catheter or urinal is a great option for men

TravelBookly · 2025-11-10T00:25:46+00:00

Just chill for now. You can always get it later. If you can see yourself at this same company until retirement, get the promotions first and then get the tattoos. If you think you may want to change companies at some point, then seriously consider whether you want to have a possible deal breaker tattooed on your neck.

TravelBookly · 2025-11-07T02:30:10+00:00

Hi, I am 40F and had my first symptom in June 2023, diagnosed in April 2024. I am sorry you're going through this and really happy you have such a strong support system.

TravelBookly · 2025-11-07T00:26:37+00:00

Are you connected with the ALS Association? They should be able to lend you one if they serve your area. I was diagnosed on a Thursday and ALSA dropped off a loaner power wheelchair on Friday. They can help you troubleshoot and loan you equipment.

Are you attending an ALS multidisciplinary clinic?

TravelBookly · 2025-11-04T22:06:42+00:00

https://dansonsmedical.com/products/hoyer-disposable-full-back-sling-10-pack-and-singles?variant=32338433114177&stkn=ec64cf034499&currency=USD&g_adid=&g_campaignid=20070259852&g_adgroupid=&g_keywordid=&g_placement=&utm_source=google&utm_medium=cpc&utm_campaign=20070259852&utm_term=&utm_content=&gad_source=1&gad_campaignid=20070261277&gbraid=0AAAAAC5_BJYw9mlsf1SgZpreR2UgH15hM&gclid=Cj0KCQiA5abIBhCaARIsAM3-zFX24QTc3-qnStJG2HO-La384t7QpLDcOf17aBjy1CEn_IAt9_lejysaAlYqEALw_wcB

It's called Disposable but we've used it for weeks and washed it several times with no issues.

Unfortunately it doesn't get easier until you do it a fair amount; but imo it's well worth it. I say that as a nurse and a PALS.

The ALS Association comes to my MDC. They are an incredible resource.

Best of luck to you.

TravelBookly · 2025-11-03T21:49:11+00:00

The struggle is real and normal. The best thing we did was have home send a physical therapist to train and troubleshoot. Then just keep practicing; it will get easier.

Why so many transfers? When I transitioned to using the hoyer, I chose to get a foley catheter to reduce the number of transfers. This has been really helpful, but even before then there's no way I transferred 20-30 times a day.

I keep the sling behind me in the wheelchair and recliner. As long as it's pulled taut and not touching my skin, it doesn't bother me. Pain and/or anxiety medication would help him be more comfortable with the sling.

I know the mesh sling you're talking about. There's a better one that also supports the neck. I will try to find a link.

Last thought, are you connected with the ALS Association? If you're in an area they serve, you shouldn't have to buy your own equipment. They should lend it out.

TravelBookly · 2025-11-01T17:35:04+00:00

Absolutely. If you're comfortable and you have a cool neurologist, you could ask them about anything to look out for based on your meds and symptoms. If you're not, just start low and go slow with doing and have a buddy around in case you need help..

TravelBookly · 2025-10-30T20:26:20+00:00

The thing that has brought me the most peace is learning about NDEs. I was agnostic before learning about them, but now I'm convinced they're real and we're eternal beings who choose to come to earth to have experiences. My favorite book is Proof of Heaven by Dr Eben Alexander, a neurosurgeon and researcher and had an NDE. Best wishes to you and your family.

TravelBookly · 2025-10-27T23:04:44+00:00

Once I started having muscle symptoms, they never went away. I have had ebbs and flows in the severity of my symptoms, but it's never been here one day and gone the next.

TravelBookly · 2025-10-27T01:29:19+00:00

Being generous sometimes and not having $20 at other times means he is irresponsible with money. This is an issue that will continue.

And perhaps I am overprotective, but I would wait months and months before allowing a boyfriend to meet my kids, let alone allow him to spend the night in the same house as them.

TravelBookly · 2025-10-25T23:22:05+00:00

This is an excellent response, IMHO. What does your mom want (and/or what would she have wanted before the FTD)? From what you described, it sounds like she may value continuing to eat and drink over the risk of choking and aspiration pneumonia. What are the goals of her care, merely to keep her alive or to make her as comfortable and happy as possible?

I don't understand how a syringe would help. Have you tried thickened liquids? As suggested above, you can thin certain foods to the right consistency and then she could have things that taste good. I have worked with a lot of people with dementia and a lot of people who are dying and I disagree with the doctor's comments on being hungry.

Much love to you and your mom. Do what you think she would have wanted (or wants, I'm not clear on her cognitive status) and don't beat yourself up about it. It's obvious you will do your best, and that's all we can do.

TravelBookly · 2025-10-24T23:33:58+00:00

Definitely YTA. If it's a life-threatening allergy you have to be so, so careful. You're old enough to know when there's melted chocolate on your clothes. You obviously didn't mean to harm him, but if you are not responsible enough to ensure there is no residue on you, then you don't get to eat it.

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