[tammy]

You’re absolutely right, it is ridiculous that we have to stress over such a small amount of money. Especially when they go around handing out food stamps like they are breath mints. To people who don’t really need it but know how to scam the system. Makes the people who do really need it look bad. I know so many people who have used food stamps even though they are fully capable of holding down a good job, just because they can. Makes me sick. Exactly what I was stressing about last night was the fear of my Medicaid being cut off and losing my PCA’S. Not something that any of us should be stressing about when we have enough going on

[tammy]

I use Crest whitening strips twice a year. Once you get the hang of putting them on you can actually start to do it pretty quickly. I stick it to my front two teeth in the center first and then I just go along and flatten it down along the sides and then fold it backwards. They work great. My dental hygienist always jokes and says that my teeth look like pearls LOL. When they first came out the consistency of the whitening stuff was a little bit jelly like but now since they’ve improved them, you really don’t feel the stuff at all and it doesn’t leak out in your mouth. It completely stays on the strip.

[tammy]

I had a consultation with the Jaco but the guy was not able to put it on my current chair so unfortunately right now I can’t even try for it. I was told it was compatible with all the chairs LOL but apparently not one that is as old as mine. The one thing I have to say that I don’t like about it is that there is no warranty. I asked the rep about that and he said no warranty or replacement if it stops working. So if it breaks that’s it and it’s garbage. After all that fight and all that money.

[tammy]

I swear by the oatmeal and will not stop eating it for as long as I’m on the medication

[tammy]

Question… Does anyone know if there is a way to test whether or not your smn2 protein has increased after starting risdiplam? I thought I read somewhere that somebody posted their number had gone up one number. But maybe it was in reference to something else. In other words, if I get a genetic test before starting risdiplam, and my number is whatever it is(i don’t know it). And then I have the genetic test done again let’s just say 6 months after starting risdiplam, will it show whether or not your smn2 protein has increased?

[tammy]

They are difficult to put on but if you have a PCA who knows what they are doing, they should be able to do it correctly. They also make a device that you put the sock around and then just simply slip your foot in and pull the device out. You can get it cheap on Amazon. I think it’s called a compression Aid or something like that. Also sometimes I wear bombas socks which have an arch support band in it that kind of acts as a compression. At least for me it does. But I wouldn’t use them without talking to your doctor first

[tammy]

I should elaborate a little more on what I just said above. In other words, I have been on it over a month with no issues. Not even diarrhea. That’s why I’m wondering why and isolated rash now. Or maybe it’s just a coincidence and it is totally something else

[tammy]

I posted something in another thread about the issues people were reporting about diarrhea. Not sure if anyone saw. But figured I would post it in here too as it could be helpful to somebody else. Prior to starting Evrysdi I heard all the complaints about diarrhea, so I decided that I would try to do my best at preventing the diarrhea from the start. So since the very first day I started taking the med(April 30th) I eat a bowl of unsweetened steel cut oatmeal every day about an hour or so before taking my dose. And so far I have had no stomach problems, no diarrhea. I read that oatmeal can help stop diarrhea so that is why I decided to eat it everyday. It’s bland and it’s boring lol, but if it works then that’s the most important thing and I will continue to eat it. Give a try if you can

[tammy]

So if you could just explain what this means to me… “Thus, resources eligibility (or ineligibility) exists for an entire month at a time.” Cuz I got confused when things are worded in a complicated way LOL maybe it’s ADHD. In my head that sounds like it’s saying they calculate based on what’s within that month. But I trust what you were saying that as long as it’s not there on a long-term basis.

[tammy]

Thank you so much!

[tammy]

Thank you!! I was literally sitting here panting over it and wondering if I should call them to explain but then thinking maybe I should not draw attention to it and maybe they won’t notice lol. I feel much better now! Like I said it was just the amount of deposits over that time. But not what my balance was. Not even for one day was it over 2,000. I am so good about making sure I am under. Like way under it. My comfort zone is usually a thousand or less

[tammy]

Anyone here with an able account… Could you tell me a little bit more about it? I’ve been hearing about it and I’m trying to find time to look into it but I would like to know firsthand from people who already have one, what it’s like. Like you can’t use the money however you please. You can only use it to spend money on food and housing and other care needs. Would love to get some people’s inside and input on this kind of an account.

[tammy]

It definitely is BS. And do they honestly think that even if I had a roommate that that person would just never leave the house ever? LOL. Do they not think that I ever leave the house alone? Or with friends? With people who are not caretakers? But anyway yeah I don’t know what the right way of going about it is. I mean what would you do if it were you? Would you just go ahead and accept the place and deal with the fight later? That is if I were to get offered a place before don’t even answer from the state. Just looking for others opinions on what they would do if it were them.

[tammy]

That’s what I’m wondering if I should do. Just move and notify them after the fact. I already have nursing secured. The people who are with me now would just be with me at the new place. Considering it’s no inconvenience of a drive for them because it’s just one minute down the street from where I am now LOL. And I have overnights. I have 16 hours per day so I have a morning shift and a night shift every day. And I have more than enough people who can “come to my rescue” if I need them in between shifts. Especially these days when we have smartphones and home devices like Alexa. They can’t expect me to just magically find somebody to live with for the rest of my life. I can’t go begging strangers on the street corner to come to live with me lol. And all of my friends who I would actually not mind living with are already settled in their lives and have a place already either with a spouse & whatnot. I just worry that they would cut off services until I got things straightened out. What would you do in this situation?

[tammy]

So when you initially started the process of getting your own place, did you speak with the state/insurance ahead of time about the requirements? Or did you just get the place first and deal with all the bs “rules” later? See I’m already on a waiting list for an apartment but my fear is if, let’s say hypothetically they call me tomorrow saying they have a unit available, & i take it but then get told no by the state about living alone. And then on the other hand, I’d sure hate to take my name off the waiting list and try to get all of this bs situated first, then have to go back on the waiting list again & wait another 3 or 4 or however many years for me to be offered another place again. Because I’m already high on the list. I feel like I’m screwed no matter what I do. And I sure as hell do not want to pay rent for a year and have the place sitting there not even being able to move in because the state stuff taking forever and a day. Ugh! I don’t know what is the right thing to do. I haven’t even told my insurance company or the state that I am already on a waiting list. And I don’t even know if I should or not

[tammy]

Thanks so much for your info! I’ll definitely be reaching out to you. I feel so dumb when it comes to all of this state stuff. What Zoom meetings are you referring to? I know nothing about any of that or even how to find out. I’m gonna email you 🙂

[tammy]

Oh wow that’s awesome, thanks for the info. I’m so curious about how to know if the medicine is having any positive effect. And I thought I read somebody’s post on here that said their numbers had increased sometime after starting the medication. But I wasn’t sure exactly if I read correctly or what exactly I did read. I will have to pass this info along to my doctor and see if I can get one of these tests

[tammy]

For us i think it’s more reasonable for use by a PCA, not ourselves. This way people aren’t hurting us getting it on

[tammy]

Awesome! Yeah I had a follow-up appointment with my neuro today to see how everything is going. I told him I haven’t had any GI issues and told him about the oatmeal. He said it very well could be the reason why I haven’t had any problems in that department. I’m just gonna keep on doing it LOL. Plus it’s good for you too. I just get the easy ones that come in little packets you just pour it im the cup and microwave it with water

[tammy]

How long after starting the med did you get the rash? I’ve been on it over a month already which is strange. I would have thought it would have happened right away is there was from that. And I don’t typically have many allergies at all to food/meds or anything. But I do have sensitive skin. My doctor put me on a prescription steroid cream yesterday and it seems to already be a bit better today so hopefully that will be the end of it. I just hope it doesn’t happen too often. I definitely do not want to go off the med if i don’t have too

[tammy]

Ohhh ok. Got ya. Does anyone know if you have to get blood work every so often in order to keep approval from insurance for each new prescription. In other words after I use up the 5 refills I have now, I have to get another script. Do I need anything else along with that?

[tammy]

She is right, you wouldn’t be able to reach the unlock switch from your side. However you could possibly ask them to put the unlock button closer to you. There is also an emergency unlock lever directly on the floor lock system itself. In case the button fails. Which has happened to me a few times. Usually it’s just because a wiring somehow got disconnected or loosened. Typically always an easy fix. As far as pricing, I don’t remember exactly but if I were to make a ballpark guess I would say that the floor lock was about 700 something and the latch/bolt that has to be put under your chair is like another 1 or 2 hundred. Crazy price for a very small piece of metal going on your chair.

[tammy]

It’s so good! I swear I would drink them twice a day if it wasn’t $3 a bottle. And they are like never on sale LOL. Even if you do the monthly subscription from the website directly, it’s still way too much

[tammy]

What paperwork are you referring to? Just want to make sure i didn’t overlook something on my end with anything. I didn’t do any paperwork other than the genetech start form. But maybe you’re talking about something else that doesn’t apply to me.