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  • How do you manage your anxiety or anxious thoughts?

    Posted by alyssa-silva on May 30, 2023 at 11:02 am

    Well, I did it. I had my first big outing since the pandemic started in the name of Taylor Swift. I went to her Eras Tour Concert. 

    My friend surprised me with tickets last year when they went on sale. He knows my health struggles and how cautious I’ve been about going places, but he also knows how much I love Taylor Swift. So he reserved a private room for me and my family and told me there was no pressure to go. (He was able to do this because he works for the sports team that plays in the stadium Taylor played in.)

    Deciding to go was a last-minute decision but I’m so glad I went. I had the best time. Taylor is so iconic. 

    That being said my anxiety was off the charts in the days before and after the concert. Leading up to the concert, I was worried that my body would be too weak to go. And after the concert, I was so worried I’d get sick with COVID or something. 

    I really don’t love feeling this way and want to work on ways to properly manage my anxiety. I was never like this before the pandemic. I work with Amber Bosselman, my life coach who has SMA, and she’s amazing. 

    But I’m wondering… do you have any tips for managing anxiety when it hits you in the moment?

    tammy replied 1 year, 1 month ago 5 Members · 21 Replies
  • 21 Replies
  • mike-huddleston

    Member
    May 31, 2023 at 9:43 am

    Hey Alyssa!

    First of all, I’m glad to hear you went to the concert!

    To answer your question, I think when anxiety kicks in, for me, I try to do mindfulness meditation. A lot of this is focusing on your breathing and trying to calm your mind. Of course, we need to avoid unnecessary risks, but that’s the issue. COVID made a lot of people extremely worried and aware, as in many cases it should have, but even though the pandemic “emergency” as defined is over, there are still precautions those with serious health conditions still need to take. So, try to be mindful of the actual risks you’re exposing yourself to if you follow appropriate precautions given your health concerns. Even with serious health concerns, there are treatments available that can help.

    Then you have to weigh the risks vs. the benefits of the experience. The joy you had of going to the Taylor Swift concert is something you can measure, just as much as you assess the risks you took by going. Think back on the joy and happiness and use that as a guide in the risk/reward decision going forward. Just like you don’t want to take unnecessary risks, you also don’t want to miss out on things that bring you true joy. Consider both and I think it will help make the that is best for you – and also reduce some of the anxiety because you won’t be focusing on only the risks.

    I think I may have referenced this in another thread here, but as a Type 3 who lost the ability to walk in 2015, as I was getting weaker and having much more difficulty walking, the risk vs. reward decision was based more on concerns, actual or perceived due to anxiety, on the potential for falling and getting hurt or embarrassed. I often made the choice to avoid some of these and honestly regret most of those decisions because I missed out on many wonderful experiences.

    • alyssa-silva

      Member
      June 2, 2023 at 9:59 am

      Thank you for sharing your input Mike. I always look forward to it. I definitely weighed the risk vs. the reward for the concert. I also tried to picture myself after the concert and asked myself, “How will I feel now if I chose not to go?” Really it was that question that made the choice easy. But it still didn’t take away the anxiety.

      As far as mindful meditation goes I’ve tried several times and can’t seem to quiet my mind. I usually just get frustrated and stop trying altogether. Do you have any advice for beginners? How did you start out?

      • mike-huddleston

        Member
        June 2, 2023 at 12:35 pm

        Hey Alyssa – a couple of ideas:

        1. Initially, just focus on your breath – in and out.

        2. Don’t beat yourself up. Everyone’s mind wanders and that’s okay. When it does, show yourself some compassion rather than getting frustrated, and then just focus on your breath again.

        3. There are some decent apps that may help. One is called (I believe) Soothing Pod, and it will take you through the meditation process, from beginner to someone a little more seasoned.

        4. Repeat step 2! 😇

      • alyssa-silva

        Member
        June 3, 2023 at 10:35 am

        I’m going to give it a shot. Thank you so much!

  • lindsay-russell

    Member
    June 1, 2023 at 2:28 pm

    So glad you went to the concert! My friend and I went to night 1 in Houston! I was able to get floor tickets and it was the most amazing experience ever!! My friend and I cried a little when she came out because of how close we were lol. That was my first big outing since the pandemic too. As far as anxiety, you just have to push through it! I think my mom was more worried that I would catch COVID than I was. Honestly, I have gotten all the covid-19 vaccinations and boosters that I felt safe enough. Anxiety is a hard thing to deal with, I had to take medication for almost a year in my last year of college to deal with the anxiety over exams and work, but you basically have to tell yourself that what you’re afraid of is nothing. My anxiety in college was that I was going to fail every assignment/exam even though I had a 4.0 since my very first semester. I had to tell myself that what I was worried about was not true and just nerves. Also, you don’t want to miss out on the exciting things and then regret it later. Basically you just have to weigh the pros and cons and take all the precautions that makes you comfortable.

    • alyssa-silva

      Member
      June 2, 2023 at 9:45 am

      You’re absolutely right. Thank you for that. But ahhh I’m so happy you went too! Did you love it?! What did you wear?! Favorite performance?

      • lindsay-russell

        Member
        June 8, 2023 at 2:17 pm

        Yes I absolutely loved it! The best concert of hers that I’ve been to! It truly is an experience like no other! My outfit was based off Reputation. My favorite performance was Tolerate It and Don’t Blame Me/Look What You Made Me Do.

      • alyssa-silva

        Member
        June 8, 2023 at 9:29 pm

        Love your outfit! Here’s mine. I felt very *bejeweled.* I think my favorite performance was All Too Well. Love how the stage turned into autumn leaves and then the confetti snow at the end 👌 she is perfection.

      • lindsay-russell

        Member
        June 9, 2023 at 1:12 am

        Gorgeous dress!! All Too Well was so good! I’m so happy she did the 10 minute version of it. My friend and I were screaming the lyrics lol. Yes, the autumn leaves and snow confetti was the perfect touch!

  • tammy

    Member
    June 1, 2023 at 2:43 pm

    That’s awesome glad you were able to go and have a great time! It’s good for the soul! I definitely wouldn’t say I have anxiety about going out with covid around because I just think it’s not going anywhere unfortunately. I was very careful for the first maybe 5 or 6 months when it first hit the US. And I stayed out of work for 3 or 4 months during that first initial outbreak, but I went back after that and have been doing all of my normal things like concerts and trips to the beach and get togethers and barbecues. I’m still careful don’t get me wrong, when I’m indoors I’m wearing a mask. But I basically returned back to my normal life in the summer of 2020. Especially being at my job which is jam-packed with people all day long,, I’m used to being in crowds all the time. If anything I feel that it’s helped me build up a good immune system over the past 20 years that I’ve worked there

    • alyssa-silva

      Member
      June 2, 2023 at 9:42 am

      Yeah. I think the biggest driving force for my anxiety is that my lungs have gotten a lot weaker in the past few years. So I’m basically afraid to catch anything because I don’t know how well I’ll be able to fight it. But yeah. The more I go out the easier it gets. Large crowds just trigger me. To be honest, though, they always have. I’m a homebody. 😂

      • mike-huddleston

        Member
        June 2, 2023 at 12:41 pm

        Not trying to hijack this, and apologies for not knowing, but do you happen to be involved in the DEVOTE study with the higher dose of Sprinraza? I know 3 people in that study, two of whom are Type 3s and the other a Type 2. Just a couple of weeks ago I asked them how they felt. The Type 3s said it was hard to tell so far, but I found it interesting that the Type 2 said, “I feel my swallowing has improved, as well as my lungs are stronger.” She did mention this wears off around the 3 month mark for her, which was similar timing of general increased fatigue when on the regular dose.

        I know some folks have increased fatigue or weakness toward the end of the 4 month cycle between treatments.

      • alyssa-silva

        Member
        June 3, 2023 at 10:43 am

        No, no worries at all. I’m not in the DEVOTE study. Though I’m on a list for it if the opportunity arises. I hope it does soon. I’m getting my next Spinraza dose on Wednesday and am SO unbelievably weak right now. It’s so frustrating. Curious to see if a larger dose would prevent the “Spinraza slump” at the very least. Any other improvements would be an added bonus.

      • alyssa-silva

        Member
        June 3, 2023 at 10:47 am

        I should also note I start feeling my slump at the 2.5-month mark and I’m considered somewhere between a strong type 1 and a weak type 2. Are you in the DEVOTE study?

      • mike-huddleston

        Member
        June 6, 2023 at 8:26 pm

        I am not in the DEVOTE study. But I just know the 3 people I mentioned above who are. Also of interest, at the Baltimore Summit of Strength in March, Dr. Charlotte Sumner from Hopkins (she’s my neurologist although Dr. Thomas Crawford runs the Spinraza program out of there for the state – both are incredible!) mentioned that BioGen is evaluating something along the lines of a time release to see if they can make it a once a year injection. This is outside of the DEVOTE study and I’m not sure what stage they’re in for that, so not even sure if it’s actually a study – at least not yet as far as I know. If they can figure this out, it may help address the slump you mention. I am honestly really fortunate that I don’t experience that.

        I just had my 19th injection last Thursday/6th one in the c-spine. Hope yours goes well tomorrow! 🙂

      • alyssa-silva

        Member
        June 8, 2023 at 9:20 pm

        A time-release drug would be amazing. I’m meeting with my neurologist on Monday and am planning on bombarding him with questions regarding treatments. He runs the SMA clinic and research team in Boston and keeps me updated with information. Hoping for some good news.

      • tammy

        Member
        June 6, 2023 at 2:53 pm

        Well the most important thing is that you went and you had a great time. And also I’m really looking forward to this release of apitegromab in what sounds like will be 2025. I am hoping that this will be something positive for all of us

      • alyssa-silva

        Member
        June 8, 2023 at 9:23 pm

        @Tammy yesss I’m really looking forward to apitegromab too! 2025 though? Ugh I was hoping for sometime next year.

  • anna

    Member
    June 8, 2023 at 2:41 am

    Wish I had a remedy for anxiety, I’d be a zillionaire! Just to add to what’s already been said, try to give your positive thoughts too the importance they merit. For instance, I think I read in your column that you got a mild cold recently. I know it doesn’t mean much, but doesn’t it feel a little reassuring knowing that your body can still fight viruses effectively? This is my main concern because I haven’t been sick in four years, so I was thinking that catching something mild would, at least, benefit my mental health in a way.

    I tend to overthink endurance too. At my sister’s wedding I spent 11 hours in my wheelchair, something I hadn’t done in a decade. I was so worried I wouldn’t be able to withstand it that I even booked a room nearby just in case I needed to sneak out for a couple of hours and get some rest. I didn’t even feel the need to use it! Was it the adrenaline? Or the copious amounts of alcohol lol? Or, more likely, we’re stronger than we think. I had lost my sleep for weeks over nothing. Anxious thoughts distort reality, but, fortunately, they come and go quickly. Let them do their job and keep on doing yours.

    • alyssa-silva

      Member
      June 8, 2023 at 9:15 pm

      Thank you for this Anna. Yes I was sick a couple of months ago and, like yourself, had been wondering what it would be like since I hadn’t gotten sick in four years. Fortunately, I handled it like a champ but it never settled in my lungs. So I guess I had an advantage haha.

  • tammy

    Member
    June 14, 2023 at 1:39 pm

    Yeah I was hoping for next year also

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