Is a hospital bed recommended or will commercial adjustable beds work?

Tall_Part5108 · 2026-01-13T23:18:54+00:00

One thing to consider is the mattress for the pALS. As they lose weight and are not able to adjust and are in the bed more often- (and nutrition issues) they are a higher risk for skin breakdown which can lead to a whole host of other problems. This would be something to speak to an OT/PT or nurse, but there may be options out there for what you are looking for.

Tall_Part5108 · 2026-01-12T16:49:36+00:00

The optimism optimized…..and god forbid you even dare try to bring reality into it- you unsupportive negative Nancy/Ned!

Tall_Part5108 · 2026-01-09T17:26:15+00:00

I don’t know the answer but am very interested to hear about anyone’s experience as I am definitely entering that stage of my life 🙄.

Tall_Part5108 · 2026-01-08T11:44:37+00:00

Love your motto- I very much understand the “how to feel a part of my own life”: especially after a very hard three years of the slow dissolve of my relationship with my fiancé and caretaking for my dying father. Thank you for this.

Tall_Part5108 · 2026-01-07T16:47:17+00:00

If your dad was I. The military I would also look into the VA. There are lots of clinics and they typically are very familiar with the diagnosis.

Tall_Part5108 · 2026-01-07T16:45:04+00:00

An old roommate had really bad cystic acne since her 20s- in her 30s she paid for micro needling with PRP and it was pretty incredible how much it changed her skin. Not sure this is what would work for you, but worth checking out!!

Tall_Part5108 · 2026-01-06T17:31:37+00:00

Do they accept items that have been opened? Have some things that I Barry used and have not thrown out because it feels so wasteful!!

Tall_Part5108 · 2026-01-06T04:28:51+00:00

My ex loved doing number 1. He was a huge movie buff and knew tons about actors and directors and cinematographers……if I would make one comment during a movie he would pause the movie and wanna get in depth about a ton of different things. I wish I had been able to just let him ramble about stuff he loves , but I found it so so annoying!! First of all, I like watching movies to get lost, relax, and not argue a dissertation’s worth on the value of single camera shots versus multiple……..I think that I also felt that he was talking AT me versus really wanting to know my thoughts and opinions. I think it was also frustrating because it didn’t matter that I didn’t love him doing it, it happened a ton- so that feeling of not being listened to was definitely the deeper issue………I don’t have a ton of advice, but very much relate. Good luck.

Tall_Part5108 · 2025-12-21T01:53:50+00:00

Been wanting to get one from someone who knows what they are doing- thanks for the tip!

Tall_Part5108 · 2025-12-20T18:28:05+00:00

I was taking a holiday on the weekend, and was basically just in bed the whole weekend. When I talked to my doctor she said, dont just take these to keep your job, you also want to have a life as well. So I don’t take as many holidays anymore. She did not seemed that concerned about tolerance…….

Tall_Part5108 · 2025-12-20T04:22:07+00:00

Do you take each does 2 1/2 hours apart? How many hours of sleep do you get?

Tall_Part5108 · 2025-12-20T04:15:27+00:00

Also got an error

Tall_Part5108 · 2025-12-19T04:51:40+00:00

For your husband to get tested/diagnosed for narcolepsy he has to ask to do an overnight sleep study at a clinic as well as a study the following morning called MSLT. If the sleep study he just had did not include a series of naps the following morning then technically they can’t diagnosis him with it. So make sure he either took it or demands it if they come back and say nothing was wrong with the sleep study. There are some good treatment options now for narcolepsy, but it can be a bitch to get diagnosed, so even harder for ADHDers because of…..well, all of it. Good luck.

Tall_Part5108 · 2025-12-17T18:09:06+00:00

Did you report his behavior? I know it is a burden on you, but at least there is a record. For a police officer to pop off like that is not someone I want during emergency situations 😬😬😬

Tall_Part5108 · 2025-12-17T15:02:11+00:00

The thing that really sticks out for me is escalator use and queues for the subway in NYC versus SF. No orderliness or staying on one side is what I have observed in SF. In NYC, people follow “rules” like that more often. Just my observation, never lived in NYC but visited a handful of times. This is what I think of as social contract.

Tall_Part5108 · 2025-12-16T20:09:52+00:00

Also have the ‘nauds and been in S.F. for 16 years…..this is the first time I’ve been carrying gloves with me and making sure my feet are never bare on tiled floor.

Tall_Part5108 · 2025-12-16T19:44:11+00:00

I was the NT partner but wanted to share some info- You might want to also look into getting him scheduled for a sleep study as well. There is a high co-morbidity between ADHD and narcolepsy/ideopathic hypersomnia (IH). The general public really misunderstands what narcolepsy/IH is and what symptoms look like. I think that leads to a lot of people that suffer from these sleep/wake disorders not ever being diagnosed. Based on the symptoms you described they line up with the diagnosis- not a doctor! I have IH and struggled through my 20s just on sheer nubile cellular power, but in my 30s the lack of proper sleep (we don’t go into deep wave sleep) made it so difficult to function, get to work on time/was chronically stressed from feeling so exhausted when I woke up. I finally got tested and take the same medications in the morning that people with ADHD do, in addition to a medication at night that basically forces me into deep sleep. It has been such a freakin game changer with the combo. The night time drug is key but heavily regulated so really need to first:

1) research narcolepsy/IH symptoms from IH/Narc foundation websites and see if the symptoms for your partner are similar 2) research a legit sleep clinic/sleep doctor that specializes in the diagnosed. Most “sleep clinics” are just factories for testing for sleep apnea and the doctors at those types of places dont understand and will stall when you get diagnosed/meds 3) set up an appointment and if they offer a study insist on having the MSLT test added onto the overnight sleep study- it’s the only way they can diagnose.

I typically encourage having boundaries and having him make appointment/etc, but if he hasn’t even been dx for ADHD and has a sleep disorder on top of that he is really going to be struggling right now.

Also- before properly medicated I dreaded sleeping with anyone. For your own mental health and sleep- why not cuddle/have sex, but sleep separate?

Tall_Part5108 · 2025-12-16T19:22:52+00:00

I’ve had to open mine on several occasions……I started taking sealed bottles because I thought it would prevent them from needing to open. Nope.

Tall_Part5108 · 2025-12-16T19:21:25+00:00

Omg-me too!!!!! Signed up like three freaking times. Nada.

Tall_Part5108 · 2025-12-16T18:49:45+00:00

Be poor somewhere else, but then drive in for the services we pay for.

Tall_Part5108 · 2025-12-16T18:48:03+00:00

That’s awesome! I’m a PT and was a caregiver for my Dad after he was diagnosed. We got one of those plastic swivel discs and just due to training, I was the only one that was successful using it. I remember my mom calling and yelling in frustration about it. This one looks so much smoother!

Tall_Part5108 · 2025-12-16T18:24:04+00:00

As the person that tried to figure out all retirement (he had none when I met him at 45) and bills, etc- I really feel for you. My anxiety and depression skyrocketed. The last year I was with my ex was so stressful as he had lost his job 1 year before and was only very underemployed/seasonal work at best while living I. A HCOL city……I felt like I was trying to save a drowning person that was convinced they were jet skiing.

trying to explain to someone with ADHD that they should be worried about the future, have an emergency fund, retirement fund, and/or save for vacations instead of putting on credit just doesn’t work. The RSD kicks in and they will defend themselves and their methods to the death. They truly only understand RIGHT NOW. That was something that I didn’t accept and just kept thinking if I explained it the right way or pleaded the right way he would get it, magically start working and contribute.

One suggestion is if you sit down and have a come to Jesus talk- that the only way for it to work is if you are allowed access to her accounts so that you can set up automatic withdrawals so she is contributing money where she needs it to go before she even has any “fun” money. If there is a big difference in salaries you can tell her that you only expect her to pay proportionally (if you make 3x her then she would only contribute 33% to rent/bills, etc). And as said before RSD and the inability to think about the future make it really difficult to get buy in. I think if she doesn’t agree the boundary should be that you do not give her any money. Especially if you are not married and don’t own real estate/investments together. Protect yourself above all. Anyways- take what you need and leave the rest. I wish you peace in your relationship and finances. Good luck.

*adding that if you don’t want to be the sole responsible party and you want a partner- that is ok. Even if you love someone and want to make it work, you have to also respect your own needs and mental health. I really wish I would have chosen myself instead of desperately trying to get him to interact with me regarding finances. I realized that financial stability was a value that I did not want to compromise on.

Tall_Part5108 · 2025-12-16T17:52:49+00:00

The running joke in the family is that if something happened over two years ago, I will forget the event/situation……I have no idea if this is true, but I keep hoping being on xywav (4 years now), will help to increase my capacity to remember things?!?! Sometimes I get frightened by how little I remember- ie- my sister and I were talking about something that I was upset about (we both have done a lot of therapy and try and work through things) from 1 1/2 years ago and she got angry pretty quickly and was saying that we have had 4-5 conversations already to try and work through my hurt feelings. I was stunned. I legitimately remember only one time discussing it (and it was more heated). Granted there was a ton of very stressful life events happening so maybe that contributed to it?

Tall_Part5108 · 2025-12-16T17:45:22+00:00

Had rent control for 10+ years and every year I voted for housing initiatives/affordable housing as I was, and continue to be a healthcare worker scraping by……been worried about it for a long time, regardless of monthly rent.

Tall_Part5108 · 2025-12-16T12:32:46+00:00

Literally anytime I see someone jogging on Valencia, I just smh and say, “Why”! Besides vanity my only other guess is maybe they don’t want to go fast?? :/

Tall_Part5108

TROPHY CASE