[tammy]

I know it’s usually considered “frowned upon”, but have you asked your doctor to put you on a round of steroids maybe even just one time per year? I know they don’t like to use steroids often because it can damage your bones but I can’t imagine one packet per year having too much of a negative effect. Although I’m also not a doctor so what do I know LOL. Was just a thought. Because they can give a boost in energy. Especially if you are having that hard of a time. I feel like in my opinion, the benefits would outweigh the risks. I do use albuterol in the nebulizer, but it doesn’t make me shaky or give me any energy that I notice. But I’ve been on it since I was a kid so I think my body is just used to it. I have heard that the shakiness is only temporary when someone is going on it for the first time. Your body will adjust. And I drink a lot of coffee too(espresso) but still don’t have any shakiness from the Albuterol. I have also heard collagen water can give you energy if you drink it after waking up. Only downside is it’s kind of expensive. Every once in awhile I drink one but not on a daily or even weekly basis because of the cost. I just find them refreshing once in awhile. Hope some of this info is at least somewhat helpful

[tammy]

I use xyzal. It’s over the counter but my insurance pays for the generic prescription form. Some people say it makes them drowsy but it doesn’t do that to me. You are directed to take it in the evening anyway. I like it because it’s 24 hour and only once a day

[tammy]

I’m on Medicare primary and Medicaid secondary. My Medicare Part D pays for the drug and the Medicaid picks up the co-pay. It really depends on your state though from what I have heard from others. I’m in NJ and I have heard people in PA getting denied with the same insurance. I did get a lot of prep advice prior to starting the medication from the genetech PAL. She was fantastic. Hopefully yours will be too. Should definitely speak to them and ask as many questions as you can think of. I had all of my ducks in a row prior to seeing the neurologist to get the script for the med. It made things move along much quicker. Whereas I know others who have seen the neurologist first and then had to go for genetic testing afterwards, wait for redults, and whatnot to be submitted with the script. I had all of that ready in advance because I knew it would be required to get approval.

[tammy]

Yes! It’s like who the hell wants to make small talk when their eyes are barely even fully open? Luckily all of my caretakers are understanding of this as I gave them ample warning before they even started working here LOL. People don’t think what it’s like to have the shoe on the other foot. How would they feel if we were coming into their bedroom like a motormouth?

[tammy]

Definitely feel dead to the world when it’s time for me to get up. It is known by everyone not to make small talk with me when I’m just coming to in the morning LOL. I’m like don’t take it personally but please don’t talk to me for like an hour. I was hoping the risdiplam would help with this but so far it has not

[tammy]

Just wanted to offer some advice that has worked for me so far. I knew ahead of time that this might be a side effect. So I decided right from the very first dose to eat a bowl of unsweetened(trying to cut down on sugar) plain steel cut oatmeal everyday about a half hour before taking my dose. I am now 18 days in and still have had no diarrhea. I think the oatmeal is definitely the reason. Thought I would let you all know this way if you are having some issues you can try it and see if it helps you. Potatoes can help too.

[tammy]

Oops I don’t know where the number 1. at the beginning of the post came from LOL. I think I clicked on one of the bullet options above

[tammy]

1. Nose breather here. Even with a mask on. Which is why I absolutely hate when I have a cold and my nose is all stuffed up & can’t breathe through my nose. If I’m stuffed up and I’m awake during the day, I can force myself to breathe through my mouth. But when it’s time to go to sleep, no matter how much I try, I just cannot stay asleep while breathing through my mouth. I can do it while I’m awake but as soon as I drift off to sleep it ends up waking me up because it just doesn’t come naturally to me LOL.

[tammy]

Also i agree about being questioned by adults. I find it odd & also a bit rude(even if that’s not their intention). But maybe that’s just me. To me it’s like the equivalent of asking someone why they are overweight or why they have a big nose

[tammy]

Going to Spain twice and France once was definitely my biggest adventure! Dying to go back

[tammy]

Glad your energy level is coming back! Unfortunately I am stuck in my chair all day long from afternoon until about 11 p.m. at night when the caregivers come. So I’m used to being in my chair all day until night time. My lack of energy issue is more a problem with waking up LOL. I could sleep a solid 7 or 8 hours but when somebody comes in to wake me up I feel like I could sleep for another 8 hours. Hoping the medication will help with this! ????????

[tammy]

I have been fully vaccinated since the middle of March. I do feel somewhat safer but not completely. Definitely makes me feel safer at my job though since I work around hundreds of people per shift. But there still is that slight fear that lingers. Did you get yours yet? I had very little to no reactions after the shot. Other than just extreme exhaustion the following evening after my second dose. And a very swollen arm that time too. Other than that it was no big deal. I had much more of a reaction to the flu shot this year LOL

[tammy]

Thanks everyone! I will definitely post updates! And yes i have already planned to keep immodium on stand by lol! Meds are arriving tomorrow

[tammy]

Thank you! I definitely am excited to get started

[tammy]

I tried a couple doses of creatine but got scared about the possible liver damage warning so i stopped. Did you doctor have any concerns about that or did he/she think the risk is low? I may ask my neuro about it & see if he thinks its worth trying again

[tammy]

Yeah try the collagen water! It’s good for your joints too so either way, can’t hurt. I like the vital proteins strawberry lemon. Its pricey but only has 3g of sugar from monk fruit. No artificial sweeteners