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Losmi replied to the topic Evrysdi Scheduled for Delivery in the forum Roche and Genentech- Evrysdi (risdiplam) 1 month, 1 week ago
great news DeAnn, fingers crossed that evrything goes well!! It is so nice that after this nightmarish year you will actually be able to start 2021 with new hope:)
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Losmi replied to the topic Columnist Writes About Early Starts in the forum Adults With SMA 4 months, 3 weeks ago
I am complete oposite:)
I like going to bed around 9 or 10 pm, and getting up between 5 and 6 am.
Few months ago on a podcast on productavity I heard a guy say something like ” I get up around 6 – 6:30 am, but I guess everybody is different” ; than the woman replied “I know quite a few people who thought they are not morning person but than it…[Read more]
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Losmi replied to the topic Treatment or cash in the forum Adults With SMA 5 months, 1 week ago
wow this is interesting… but in your case since Spinraza enabled you to keep living independently I think the answer is clear, Spinraza over money.
At least this how I see the world, I don’t think happiness, pleasures, comfort etc. are the most important things in life; I think we are here to learn, work, give love (if we succeed in…[Read more]
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Losmi replied to the topic Welcome Distractions in the forum Adults With SMA 6 months ago
The last picture is absolutelly brilliant!
Your enthusiastic smiled face and her doubtfull but opening position in the background, it is like a metaphor for the whole situation.
I love it!
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Losmi replied to the topic Disability vs. disease: are they interchangeable? in the forum Adults With SMA 6 months, 1 week ago
Alyssa do you know what got you interested in this topic?
If the answer yes, have you tried probing behind that conscious reason? Probing behind it meaning is that the REAL reason?
Since you say you went down a rabbit hole last night I think prior to continuing down the whole very good thing would be to answer above questions.
You say this…[Read more]
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Losmi replied to the topic Avoiding Social Media for My Mental Health in the forum Adults With SMA 6 months, 3 weeks ago
Alyssa The Marvelous Mrs. Maisel is created by the same person who created Gilmore Girls – Amy Sherman- Palladino! 😀
I watched Gilmore Girls long time ago, but I think Mrs. Maisel is a bit less girly and more funny 🙂
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Losmi replied to the topic Avoiding Social Media for My Mental Health in the forum Adults With SMA 6 months, 3 weeks ago
Exactly my sentiment Alyssa; and not just social media, I avoid any news related media.
For me it is not only about people taking this situation too lightly, I get mad when I realize that an official is blatantly lying in to a camera, or when I realize that someone is far too incompetent for the position he/she is holding… so I stay up to date…[Read more]
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Losmi replied to the topic Torn Between Spinraza and Risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 7 months, 3 weeks ago
our conscious mind is often not enough when we need to make important decisions. One way of listening to unconscious part of our being is paying attention to our dreams. When you go to bed you can pray to God, or Gods, or Universe, or simply make a strong decision that you will remember your dreams in the morning, and that you will try to find…[Read more]
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Losmi replied to the topic Procedure update in the forum Adults With SMA 10 months, 2 weeks ago
guys please have in mind that a person can be contagious with up to 14 days without any symptoms (they can feel perfectly fine), and also the virus can survive on surfaces for days (much longer than other viruses). Please think again about receiving any kind of guests, and do disinfect anything that enters your house.
This may sound tiresome, but…[Read more]
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Losmi replied to the topic Sad News in the forum Adults With SMA 1 year, 2 months ago
DeAnn I am so sorry for what happened, and the way it happened.
I don’t have kids, and don’t plan on having them, but I had experienced loss of animals that I had a privilege to share life with and it is very painful.
I do believe in reincarnation and since Roy spent his life in more meaningful way then most humans I really hope he will get…[Read more]
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Losmi replied to the topic Columnist Writes About "Finding the Sweet Spot" in the forum Adults With SMA 1 year, 7 months ago
Nicely wrote column Kevin, lots of humor, but ”Lexington, Kentucky” line was the best one for me:D Is Lexington, Kentucky really notorious for accessibility, or is it like generally one should not expect many accessible sites in Kentucky state? Whatever the reason is, I like how the whole sentence sounds.
So as I said I like the humor, but it…[Read more]
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Kevin Schaefer and
Losmi are now friends 1 year, 7 months ago
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Losmi replied to the topic Frustrations with Spinraza Protocols in the forum Spinraza 1 year, 7 months ago
I have no access to Spinraza and it is not likely that I will have it any time soon, so these are all new information for me – surprisingly unfortunate information. For the amount they are charging for Spinraza they should organize a charter helicopter to each and every patient.
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Losmi became a registered member 1 year, 7 months ago
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Hey Losmi, welcome! I’m Kevin Schaefer, one of the forum moderators, and I have SMA Type 2. Please let me know if you have any questions, and feel free to introduce yourself in the welcome forum. Thanks for joining us!
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Hey Losmi, welcome! I’m Ryan, one of the other forum moderators. Thanks for joining us!
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