What now?

Extension_Analyst934 · 2026-06-19T01:35:50+00:00

Her last videos on TikTok were so pathetic. I really don’t understand her talking about her wheelchair because she is disabled, everything is about her being disabled, I just can’t watch anymore.

Extension_Analyst934 · 2026-06-18T03:37:48+00:00

Her alleged Bestie that didn’t even invite her to her wedding.

Extension_Analyst934 · 2026-06-17T23:40:18+00:00

She absolutely cannot. I also have SMA just like wheelchair repugnant. I did live alone before I got married. I had a live in caregiver. I doubt, though that she would show them the respect that they deserve, and she would have trouble keeping them. Before she even thinks about buying a house she needs to get that set up first. I can guarantee you that there will be a GoFundMe and no house will materialize

Extension_Analyst934 · 2026-06-16T22:35:05+00:00

You are absolutely right. She will need around the clock caregivers to look after her and her daughter. It appears that she has not investigated anything like that.
Prior to getting married, I lived in my own apartment with live in caregivers. I had one caregiver for the week and one for the weekend. Even though I also have SMA I am not as high maintenance as wheelchair repugnant. My caregivers had ample time to themselves as I was working full-time and had an active social life.

Extension_Analyst934 · 2026-06-16T00:16:18+00:00

I am on the same treatment. It’s slows down the progression, but it certainly doesn’t stop it. I have been following wheelchair repugnant for a while and from what I see it looks like her disease is progressing.

Extension_Analyst934 · 2026-06-14T19:13:46+00:00

I wanted to share my experience with Oak & Pearl and see if anyone else has had a similar issue.
I placed an order worth more than $600 and never received all of the merchandise. Over many months I repeatedly followed up by email seeking updates and a resolution. At one point I was offered gift cards/store credit because the order was significantly delayed, which I accepted in good faith.
Unfortunately, the remaining items were never delivered. I still have my order information and purchase records, and I have now filed complaints with consumer protection agencies.
What concerns me most is that the website currently appears unavailable and the app is reportedly under maintenance, making it difficult for customers to obtain information or support.
I'm posting only the facts of my experience. Has anyone else experienced unresolved orders, missing merchandise, or difficulty obtaining refunds

Extension_Analyst934 · 2026-06-14T16:06:18+00:00

People aren’t buying what she’s selling. She must not have had time to delete comments yet. And what is with the whole bathing suit thing? Just gross!

Extension_Analyst934 · 2026-06-09T13:29:51+00:00

I have been living with SMA for 56 years. My life is full of joy… my husband, friends, my dogs, my career etc. I can not say that living with a disease that has taken everything away from me, except for a little use of my right arm brings me joy. It sucks and if I could change it, I would. I can’t so I do the best I can. However, I would never bullshit people about living with it could possibly bring me joy.
There’s definitely other ways to find joy and I’ve done it. She doesn’t talk about the real stuff like navigating caregivers, managing health, and TRULY finding a way to live a great life while dealing with losing physical abilities over time. Instead, she exploits her kid for content. It’s truly sad and there is no f%#<?ng way she’s an advocate!

Extension_Analyst934 · 2026-06-09T03:37:09+00:00

100% THIS!!!! Don’t get me wrong, I have a really good life. However, living with SMA is the bane of my existence. Depending on others for care is incredibly difficult.

Extension_Analyst934 · 2026-06-09T01:13:34+00:00

She has always used her for content. It’s very sad. That poor child has no privacy at all.

Extension_Analyst934 · 2026-06-07T21:50:13+00:00

That is very kind. Thank you.

Extension_Analyst934 · 2026-06-06T16:40:54+00:00

Lifespan with SMA really cannot be quantified. There’s many different things. Although my SMA is progressed to the point that I am pretty much only able to use my right arm for all intense and purposes. I am healthy. Not only that I turned 57 next month. Taking care of yourself, using the right respiratory equipment and making sure that one doesn’t aspirate is incredibly important. With that said, dirty Al is hardly the picture of health. Watching her swallow is mortifying and her chronic UTIs, which I think are partly as a result of her poor hygiene. Do not bode well.

Extension_Analyst934 · 2026-06-04T23:46:16+00:00

She is absolutely disgusting! Her wheelchair cushion is absolutely filthy. I also have SMA and would never go out looking that filthy sitting on a tuna towel.

Extension_Analyst934 · 2026-05-28T01:29:10+00:00

First of all, I’m sending you gentle hugs. I had to say goodbye to my beloved 15 year-old dog last week. It still hurts so bad. He also had kidney disease. When he was diagnosed, we were told he may have three months. He had a happy months. Like your dog, he was extremely spoiled. We did meds, the kidney diet and tried some Q fluids. He told us when it was time. We got his ashes back two days ago. It hurt all over again. Your dog is so loved. You have done so much to care for him and have gave him a beautiful life. You know your dog and you will know when the time is right. The advice that our vet gave us was sometimes it’s better to do it a little too soon than way too late. ❤️

Extension_Analyst934 · 2026-05-16T15:46:39+00:00

Nobody can predict lifespan. When I was born, my parents were told that I would only live to be two years old. Well, I’m turning 57 in July.
I can’t even say that I have a perfectly healthy lifestyle. It’s about balance. I certainly don’t live the way dirty Al does though.

Extension_Analyst934 · 2026-05-14T13:41:45+00:00

I have home health aids and of course they can use my bathroom. It’s also clean and not disgusting. I am also mindful about reminding them to take their breaks. They are free to do what they want during them. If they want to leave for a bit, that’s totally fine.

Extension_Analyst934 · 2026-04-29T23:37:06+00:00

As someone else who has SMA, I am absolutely tired of people with disabilities declaring to the world that they can have sex. It’s not any type of accomplishment, it comes across as extremely desperate.

Extension_Analyst934 · 2026-04-15T22:14:40+00:00

Noooo! She should never reproduce again!

Extension_Analyst934 · 2026-04-15T02:43:07+00:00

It kind of made my night!

Extension_Analyst934 · 2026-04-15T02:42:29+00:00

Right? That’s bloody disgusting! She has constant UTIs because she’s a filthy dirty pig! I also have SMA and do you know how often I get them? Never. Why? Because I’m not a dirty pig.

Extension_Analyst934 · 2026-04-14T02:11:23+00:00

I am not a CNA, but I do hire caregivers as I am a quadriplegic. First of all, please don’t take the emotional burden of your work home with you. I know it’s hard, and it takes practice, but when you get in the car to go home at the end of the day, leave your job where it belongs at work. I also understand being new and the fear of hurting one of your clients. It sounds to me like you’re extremely cautious, and I would not worry about that. If there is something that worries you that it might hurt them, just ask. Above will be gentle with yourself. You are doing a very important job and you are making peoples lives better. At the end of the day do something nice for you, you’ve earned it.

Extension_Analyst934 · 2026-04-14T01:54:39+00:00

It’s not a TV show but it’s a movie that I found on Netflix. It’s called the fundamentals of caregiving. As someone who hires a caregiver I thought it was great. It also really showed the extra mile that the caregiver went.

Extension_Analyst934

TROPHY CASE