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  • Welcome April Members!

    Posted by deann-r on May 11, 2023 at 9:59 am

    Can you believe it’s almost mid May? That means we’re behind in welcoming the newest members who’ve joined us. We’re so glad to have you here.

    @dwk2023
    @vmtonso
    @lynnhenry9
    @cwalters

    This is our monthly tradition. We’d love to get to know you. Please feel free to introduce yourself! Here are some prompts to get you started, but feel free to tell us what you’re most comfortable sharing.

    Paper or plastic?
    Where in the world are you from?
    Do you have SMA or know someone who does?
    Are you on any treatments?
    What hobbies do you have?
    Do you have music preferences?
    If you could shout something from the rooftop, what would it be?

    We look forward to getting to know you!

    Oh, and for those of you who have been here a while feel free to chime as well. Since this is a fairly new tradition we’d love to get to know you better too!

    victor-martins-tonso replied 10 months, 3 weeks ago 3 Members · 5 Replies
  • 5 Replies
  • victor-martins-tonso

    Member
    May 14, 2023 at 8:41 pm

    Hi everyone!

    Thank you very much @DeAnn R!

    It’s a pleasure to be here! I recently read some old forums and really identify myself on it!

    I will introduce myself!

    Victor, 36 years old, SMA type I. I’m recently married (about 14 months ago) and we are expecting our first baby girl to arrive in the next few days!</span>

    We are Brazilians (me and my wife), but we recently moved to FL, 6 months ago, because I received a job offer. I’m a radiologist physician, currently working at the University of Florida.

    Taking the opportunity, we are going through a hard time right now! As always, caregiver issues! haha When I received the job offer to come this caregiver was working with me for a while back there. Was natural to talk with him and see if he would be interested in coming with me. We discussed ALL the details (salary, working hours and routine, work expectations, etc). Everything you guys know. I’m also dealing with PCAs for a while and, as I saw on the old forums that I mentioned, as you guys I always try to cover all the angles as well. We agreed that he would be here for at least 1 year (Because I knew I would need some time to get settled and build a support network here), after this one year we could sit, talk, renegotiate and plan about the future. But of course, the guy didn’t comply with the agreement and went crazy about a month ago. Was very ugly, he tried to intimidate me physically inside my apartment. I want to lose my time giving details but was completely unbelievable and unacceptable how he behaved. So why basically had two options: getting arrested or sending him back to Brazil. The first one just would give me more headache and trouble to deal with, so I decided on the second. Since then I’m looking for someone. People come and go but so far I couldn’t find a definite person/team. This week someone came to my place, helped me for two days, and then on the third day simply didn’t show up in the morning! And didn’t bother sending me or replying to my messages or taking my calls. Simply disappeared. And I had to go to work.

    I’m trying to go through all the resources. And as you guys know, this kind of service/assistance here is very expensive! Almost all the companies require four our minimum shifts, when actually I really need help 1 hour in the morning and 1 hour in the night. Another point is that I never had good experiences hiring through companies in the past in Brazil and I recently talked with a friend here that also needs this kind of assistance and she said exactly the same. She also prefers trying to hire someone directly. Thank God and my really hard work I have a good income. I’m not finding the right word to describe it,  of course, this is good, but specifically on this matter, my income impedes me from having access to some of the PCA financial assistance that I learned about recently. It sucks because of course, I don’t want to work just to pay for the assistance that I need to go to work! haha Some of the resources that I tried, I also did not qualify for because I’m not considered a homebound person and because of that I cannot receive Home Care services. Even if I really need it. Haha Eventually at some point, makes more sense for me simply not work, not be productive or contribute to society, because that is being a burden instead of being a virtue. It is very contradictory and frustrating!

    Anyway! I would love to hear your thoughts on that! And also any tips and clues you guys could share I would really appreciate it! Especially if some of you live in FL. Because I noticed these things can differ considerably between different states, right?

    Extra question: Does health insurances NEVER pay for this kind of medical necessity?! PCA assistance? Have any of you guys tried to fight this before? I’m wondering if I should try to speak with an attorney that deals with this kind of issue to see if there is anything that can be done…

    For the sake of completeness! 😛

    Paper or plastic?

    That’s tricky. I do hate every and any kind of waste. but I do use plastic bags from the supermarket to place my trash inside. I really don’t see a reason to fight for not having plastic bags in the supermarket and having to buy plastic bags for your trash. Haha Anyway, that’s me.

    Where in the world are you from?

    Brazil! Living in Gainesville, FL

    Do you have SMA or know someone who does?

    I have!</span>

    Are you on any treatments?

    Spinraza

    What hobbies do you have?

    Right now my hobby is trying to find a PCA! Haha

    Do you have music preferences?

    Sertanejo (Brazilian country music) and pagode! But I am very eclectic. I just don’t like heavy metal. And I also get tired very easily with electronic music. Haha

    If you could shout something from the rooftop, what would it be?

    Paper plane! 🙂

  • alyssa-silva

    Member
    May 15, 2023 at 7:42 pm

    Hey Victor, welcome! I’m sorry for all the trouble that you are going through. That is so frustrating. I don’t know too much about Florida, but are there any government-funded programs that you’re eligible for where you can hire your own PCAs? I’m in Rhode Island and am on a program through Medicaid where I can hire my own caregivers. I agree, having companies hire for you is not ideal.

    Aside from hiring caregivers, what’s Brazilian country music like? What should I look up on YouTube? I’m Portuguese (though not Brazilian Portuguese) and would love to listen to some sertanejo! 🙂

    • victor-martins-tonso

      Member
      May 30, 2023 at 11:32 am

      Hi Alyssa!

      So far I couldn’t find any program that I qualify for, but I will keep working on it!

      Sertanejo is very diversified! There is like old school (chitaozinho e xororo, leandro e leonardo, zeze de camargo e luciano…), very old school haha (tiao carreiro e pardinho, milionario e jose rico, chico rey e parana…), some more recent great names (bruno e marrone, joao bosco e vinicius, jorge e matheus, gustavo lima, marilia mendonca…). A more recent trend is the “sertanejo universitario” (trying a translation, is something a “college or universitary sertanejo”). You can search any of these names on youtube, spotify, etc… or something more generical like “sertanejo 2023 lançamento mais tocadas”, “sertanejo 2023”.

      Let me know your thoughts!

  • deann-r

    Member
    May 16, 2023 at 9:04 am

    How exciting!  Congratulations on becoming a proud papa soon.  Sorry you have to deal with the stressor of finding caregivers amidst welcoming a baby.  As far as I know most insurance carriers do not provide coverage for caregivers.  Although Medicaid does, it is an income based program.  Some states do offer a Medicaid Buy-in but I’m not really sure how that works.  You’re right, each state can differ vastly on what they provide.  Best of luck, hopefully you can shift focus and find a more enjoyable hobby.  Although with a newborn that might take up most of your spare time.

    • victor-martins-tonso

      Member
      May 30, 2023 at 11:33 am

      Thank you!!!

      I will let you guys know if I find something!

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