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Losmi

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@losmi

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    Losmi replied to the topic I’m Back! Well, Sort Of… Here’s the Scoop. in the forum Adults ​With​ ​SMA 3 months ago

    I am sad to hear this Alyssa.

    Sending you good vibes! 🌹🌞🌈🧡✨

  • Profile picture of Losmi

    Losmi replied to the topic Olympics Lacking Representation in the forum Disability in Media 3 months, 2 weeks ago

    as always, I don’t think other people are responsible for my feelings, I am responsible for my feelings.

    Do I accept myself as not being good enough professionally? Do I accept myself as not being good enough as a friend? Do I accept myself as a disabled person?

    If I do accept myself as a disabled person, I am not going to be hurt by anything…[Read more]

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    Losmi replied to the topic On Beating Yourself Up in the forum Adults ​With​ ​SMA 7 months, 3 weeks ago

    yeah I mean these kind of things happen to everybody, it is just part of being a human:) I also did 2 weeks ago very stupid thing that impacted my health (I am too tired to write about that right now), and I was so furious 🙂 But this is like being angry at yourself because you have to eat, you just have to it, every living being has to it, and…[Read more]

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    Losmi replied to the topic Discussing SMA Pride and Disability Language in the forum Raising Awareness of SMA 9 months, 1 week ago

    When I communicate with people online I like to write long messages, so I can explain my attitude/stance, so I can be sure (so I can try to be sure) that nobody is offended etc.

    I don’t have the time to do that right now, but I just wanted to say that I agree with what Lupa said.

    It seems that people suffer so much from SMA (which is…[Read more]

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    Losmi replied to the topic Working with one of my favorite brands in the forum Weekly Wins 9 months, 3 weeks ago

    Nice, congrats Alyssa!

  • Profile picture of Losmi

    Losmi replied to the topic Social Anxiety in the forum Coronavirus (COVID-19) and SMA 10 months, 2 weeks ago

    So if you are not worried about Covid, what is actually happening?

    I don’t have anxiety but every contact definitely affects me more. Like if I go to the office and have just some little chit-chat I can think about that for the rest of the day. What did I say, how did I say it, what was my body language – and the same thing for persons I was…[Read more]

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    Losmi replied to the topic Advice On Self-love? in the forum Adults ​With​ ​SMA 1 year ago

    Hello Crystal, another great topic started by you, and I am gladly going to contribute to it, so thank you!

    Before I start ranting, let me first say that I think that this is not an easy topic 🙂 It’s one of the most profound questions in life – how can I accept myself for what I am? This question plagues healthy people as well as us dis…[Read more]

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    Losmi replied to the topic SMA and Nighttime Hallucinations in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 1 month ago

    OMG, the big spider thing sounds absolutely terrifying! I guess it can be very discomforting to see something that you know for sure is not real and can’t be in your room, but to not be able to jump up and get away (just in case) from freaking giant spider… horrible situation.

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    Losmi replied to the topic Nike's Go FlyEase Not Easy to Go Get in the forum Adults ​With​ ​SMA 1 year, 3 months ago

    That is pathetic, but it is perfect paradigm for what kind of world we are living in.

    On the other hand I think that this situation should be the topic of your next column. It’s brilliant, and you can scale it up or down, but I would probably scale it up. Do some research on other corporate campaigns like this, if some had some real impact or was…[Read more]

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    Losmi replied to the topic Evrysdi Scheduled for Delivery in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 5 months 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 1 year, 8 months 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 1 year, 9 months 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 1 year, 10 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!

  • Profile picture of Losmi

    Losmi replied to the topic Disability vs. disease: are they interchangeable? in the forum Adults ​With​ ​SMA 1 year, 10 months 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 1 year, 10 months 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 🙂

  • Profile picture of Losmi

    Losmi replied to the topic Avoiding Social Media for My Mental Health in the forum Adults ​With​ ​SMA 1 year, 10 months 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]

  • Profile picture of Losmi

    Losmi replied to the topic Torn Between Spinraza and Risdiplam in the forum Roche and Genentech- Evrysdi (risdiplam) 1 year, 11 months 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 2 years, 2 months 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]

  • Profile picture of Losmi

    Losmi replied to the topic Sad News in the forum Adults ​With​ ​SMA 2 years, 5 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]

  • Profile picture of Losmi

    Losmi replied to the topic Columnist Writes About "Finding the Sweet Spot" in the forum Adults ​With​ ​SMA 2 years, 11 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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