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  • Hello everyone

    Posted by sara on August 15, 2023 at 4:08 pm

    Hello. I’m Sara and I just registered yesterday, although I have to admit I have been visiting these forums for a while now. Coming here and reading your testimonies and shared experiences has been really important, so I thought I had to say hi and thank you to everyone.

    I guess I’m supposed to tell you about myself so here it goes: I’m from Portugal, I’m 46, persistent (some would say stubborn), I love Legos although I can’t build them with my hands, I’ve met my best friend 42 years ago, I studied mathematics, work in graphic design and music saved me a bunch of times. I have SMA Type II and began the treatment with risdiplam 14 days ago. (No side-effects for now, but still anxious about it)

    That’s it and as I said before: thank you.

    alyssa-silva replied 9 months, 3 weeks ago 4 Members · 11 Replies
  • 11 Replies
  • Lisanne

    Member
    August 16, 2023 at 1:46 pm

    Hi Sara I also joined this forum yesterday and have been reading some of the questions and responses. I was diagnosed 40 years ago with type 3. There weren’t groups, and forums back then. It’s nice to connect with others and share our SMA experiences.

  • alyssa-silva

    Member
    August 17, 2023 at 7:56 am

    @sara You’ll have to keep us posted on your Risdiplam journey. How exciting!

    What type of graphic design work do you do? It’s always been a hobby of mine. Also the whole stubborn/persistent thing… definitely a Portuguese trait. I have it too. 🙂

  • deann-r

    Member
    August 17, 2023 at 10:10 am

    Welcome Sara and Lisanne! It’s great to have you both here. I think you’ll find we have a great community. Feel free to chime in on any of the conversions. The more input the better.

    Small world Sara, lots of connections with Portugal. My sister’s mother-in-law lives there. She just visited a few months ago. If I traveled it would definitely be on my destination list. How was the accessibility?

    What kind of music do you like? It’s amazing what music can do for our spirit. I’m always looking to add new artists to my playlist so I’d love to know your favorites. Much more into music than mathematics. Kudos to you for studying it. Was there a specific field you studied?

  • sara

    Member
    August 18, 2023 at 4:18 pm

    Thank you, Alyssa and Deann.

    The Portuguese connections are huge around here I see. 🙂 are there any other Portuguese members?

    I work as a freelancer so I get to do a bit of everything depending on the client. In the beginning, I did a lot of wedding stationery, which I didn’t enjoy for the most part, but then came websites, logos, and brand identity. Lately, I’ve been working with an academic institution so mostly I’ve been doing the posters, badges and abstract books for conferences.

    As for risdiplam, I’ve just started (17 days ago) and I I wish I could say it’s already part of my routine and I don’t think about it, but I’m still not there. I’m not an optimist and although I haven’t experienced any side-effects until now I think I’m still waiting for the piano to drop on my head… It’s silly, I know but I’ll get there in time.

    Deann, I could talk about accessibility for hours so just let me say this. Portugal is a small country, but there are very different realities within the territory. You have big cities like Porto that made huge improvements in the city centre, but then there are neighbourhoods in which you cannot even cross the street. Lisbon was built on hills hills, which doesn’t help, and don’t even get me started on the public transportation. It’s still a struggle every day. On a positive note, the community is getting bigger and with a louder voice, things are getting better but not fast enough.

    I talk too much, sorry. I’ll leave the music for another day. 🙂

    • alyssa-silva

      Member
      August 21, 2023 at 9:45 am

      That’s awesome Sara! If you studied mathematics how did you get started in graphic design? I’d love to do something like that someday. 🙂

      • sara

        Member
        August 24, 2023 at 5:13 am

        Well, I had a friend who worked in the college newspaper and we talked a lot about design layouts and typography. He introduced me to the most basic software and encouraged me to try it out. At that time, I was going through a severe increase of my muscle weakness. It was when I stopped being able to feed myself and write with pen and paper. I was a bit lost for a while and mathematics started to make less sense as a future because it required my full commitment. I realised I wanted to do other stuff. A few months later, a friend got married and asked me to do the wedding stationery and that’s how it began 🙂

      • alyssa-silva

        Member
        August 24, 2023 at 9:27 am

        Funny how life works out like that 🙂 Do you use Adobe programs for your design projects? In the early days of the pandemic when I didn’t have much to do, I taught myself to use Adobe Illustrator and Photoshop. I’m not a professional, but I practice a lot and do projects for friends on the side. You’ll have to share your work with us sometime!

      • sara

        Member
        August 29, 2023 at 8:03 am

        Yes, I use illustrator and Photoshop and do a lot of work on InDesign too. Practising is a great way to learn. That’s how I did it too. Nothing beats the process of trying something, realising it doesn’t work and having to try again and again until you get to a point where you are happy with the result. I find it very rewarding.

      • alyssa-silva

        Member
        August 30, 2023 at 9:46 am

        I agree. It is so rewarding. InDesign is my next program to learn! Hopefully I can find the time soon. 🙂

    • deann-r

      Member
      August 22, 2023 at 10:54 am

      You definitely don’t talk too much. As someone who doesn’t travel I really do find it fascinating. I love seeing when destinations make the effort to be accessible. Obviously it’s not always possible but sometimes there are creative solutions that won’t compromise the integrity of the space. I’ve been seeing beaches becoming more accessible. That’s something I couldn’t fathom before. What’s the biggest frustration with transportation?

      • sara

        Member
        August 24, 2023 at 7:28 am

        Let me give you an example of what I was trying to say regarding public transportation. Take the Lisbon buses, for example: by law, all of them are accessible, but in reality many don’t have a ramp. Another example: the subway. Most of the stations have lifts, but some of them stay out of service for months.

        As for accessibility to buildings I completely agree. There are so many ways it can be achieved that I get really angry when I hear it’s impossible to do because it’s an historic building — as if history and accessibility were mutually exclusive. But even in newbuilds, most of the times, I think this comes as an afterthought, which is unacceptable.

        Ah we have a lot of accessible beaches. That’s a pretty good thing 🙂

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