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Yvette Haas replied to the topic Evrysdi Trade-offs in the forum Roche and Genentech- Evrysdi (risdiplam) 6 days, 12 hours ago
Hi, I don’t have much to offer in terms of whether or not it will provide any gains, as I’m new to the drug and have not noticed anything yet. I can, however, say that my biggest complaint when I began was that I started getting heartburn. For the first few days, it lasted for large portions of the day. The following week, it went to popping up…[Read more]
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Yvette Haas replied to the topic Evrysdi Update in the forum Roche and Genentech- Evrysdi (risdiplam) 1 month, 2 weeks ago
I was approved by Medicare within about ten days. If it makes any difference, I was not on Spinraza previously.
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Yvette Haas replied to the topic Starting an ABLE Account in the forum Adults With SMA 1 month, 2 weeks ago
For me, it was the fastest and most logical way to get my insurance back after SS gave me 10 months of back-payments in a lump sum , which put me $6500 over my limit and the only guidance they were giving me was to pay for my funeral expenses (done years ago) and “buy clothes”. I’m the person who loves thrift shops and hates wasting money, so I…[Read more]
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Yvette Haas replied to the topic World of Switches in the forum SMA Assistive Technology/Equipment 1 month, 2 weeks ago
Deann, would you be able to message me on FB, or email, since I can’t seem to get this to let me know when others comment?
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Yvette Haas replied to the topic Electronic Visit Verification in the forum Adults With SMA 1 month, 2 weeks ago
I was supposed to switch almost a year ago, but I plan to avoid it until absolutely necessary. The whole thing is going to make me really mad, so I’m’ silently protesting. The concept of taking several minutes, twice per shift, just sounds completely insane. Also, it’s going to seriously complicate figuring out how to put my Mom in the schedule. Uhggggg
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Yvette Haas replied to the topic World of Switches in the forum SMA Assistive Technology/Equipment 1 month, 2 weeks ago
Deann, yes, that is a Microlight switch, which is definitely a huge favorite for those who WANT sensitive. What size would you like it to be? Do you know where you will want it mounted?
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Yvette Haas replied to the topic Starting an ABLE Account in the forum Adults With SMA 1 month, 2 weeks ago
I opened one last year. You do it all online and SS has absolutely no knowledge of the fact that ABLE accounts are even a thing. I spent a lot of time comparing all of the different states, and ended up choosing RI (which is probably slightly amusing to you).
Feel free to ask more or pm me< as I don’t always see things here.
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Yvette Haas replied to the topic World of Switches in the forum SMA Assistive Technology/Equipment 1 month, 3 weeks ago
Hi DeeAnn,
Yes, the options with switches are pretty much limitless. Is there any chance you could tell me which model he gave you, so I could get a better idea of what you consider too sensitive? That way I can make suggestions (or make you a switch).
As for the question about the laptop…. You should post that to the ATMakers group on FB. Lmk…[Read more]
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Yvette Haas replied to the topic Disabled Small Business Owners in the forum Adults With SMA 2 months, 2 weeks ago
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Yvette Haas replied to the topic Apps to Manage SMA/Health in the forum Adults With SMA 2 months, 3 weeks ago
Google Calendar is my best friend. Okay, maybe not my best friend, but it reminds me of everything.
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Yvette Haas replied to the topic Looking for Evrysdi Updates in the forum Roche and Genentech- Evrysdi (risdiplam) 2 months, 3 weeks ago
I took my first dose a little over an hour ago, and I’m still here, but that’s definitely not a helpful update for you.
I can tell you that administering it is relatively easy, and the adaptor is simply because they give you Enfit syringes and you might not use Enfit extensions.
I was never on Spinraza, so I have nothing to compare it to besides…[Read more]
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Yvette Haas replied to the topic Managing Stress in the forum Adults With SMA 2 months, 4 weeks ago
I’d suggest Bach’s Rescue Remedy. You can also get it in hard candies, but I prefer the ease of the spray (I don’t eat much by mouth)
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Yvette Haas replied to the topic Tips for Dealing With Congestion in the forum Adults With SMA 3 months, 3 weeks ago
I really love taking a few deep breaths of Olba’s oil. Sometimes I will make my own blends, but that one is definitely my favorite.
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Yvette Haas replied to the topic Outdoor Heat Lamps in the forum Adults With SMA 3 months, 3 weeks ago
I know it wouldn’t help your whole body… But I LOVE the hand heater on my wheelchair! It’s a lifesaver.
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Yvette Haas replied to the topic BiPAP Nasal Masks in the forum Adults With SMA 4 months, 2 weeks ago
I use the Pico mask https://www.usa.philips.com/healthcare/product/HC0022700/pico-nasal-mask
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Yvette Haas replied to the topic Nebulizer treatments in the forum Adults With SMA 4 months, 3 weeks ago
I do a nebulizer treatment every morning, while I still have my bipap mask on, before getting up for the day. I have been doing that for as long as I can remember… So probably for like 22+ years. I find that if I don’t do that, I feel like my lungs are not fully ready to function yet (honestly, though, I am not a morning person, so no part of me…[Read more]
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Yvette Haas replied to the topic Anxieties of Getting New Equipment in the forum SMA Assistive Technology/Equipment 1 year, 6 months ago
I just commented about this on a different thread, so sorry for the duplicate, but I’m just going to copy and paste because the answer is the same:
Yeah… So my chair is somehow from 2001 (Yes, that 2001!) and still going strong. The other crazy part of this story is that I’ve been working on getting a new chair since 2011!!! It’s been the most…[Read more]
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Yvette Haas replied to the topic When do you decide to get a new wheelchair? in the forum SMA Assistive Technology/Equipment 1 year, 6 months ago
Yeah… So my chair is somehow from 2001 (Yes, that 2001!) and still going strong. The other crazy part of this story is that I’ve been working on getting a new chair since 2011!!! It’s been the most ridiculous process ever, but I’m happy to say that it’s fiiiiiiiiinally about 95% tolerable. I can’t even get into the issues, but basically, I’m…[Read more]
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Yvette Haas replied to the topic The Power of Eye Tracking Technology in the forum SMA Assistive Technology/Equipment 1 year, 6 months ago
I’m surprised that you have so much trouble with reliably using the Tobii 4C. I have used the Tobii EyeX on a Surface Pro tablet for the past 2 years, and just upgraded to the 4C on Sunday. I love both of them (don’t see a huge difference between the two) and use it every morning while doing my breathing treatment, which now takes way longer…[Read more]
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Yvette Haas replied to the topic Flying Tips for Wheelchair Users, From Wheelchair Users in the forum Adults With SMA 1 year, 6 months ago
I just recently started flying again, after deciding that I couldn’t deal with flying with my wheelchair about 12 years earlier. My trick? I built (no, I designed… others built) a custom stroller that I can happily use for traveling. While this does mean that I lose some independence for 7-10 days, it also means that I can go to places that are…[Read more]
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