alyssa-silva
Forum Replies Created
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Hi Grant. Welcome to the forums! I have never used ginseng but have heard of it before. What are its benefits?
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Thanks for the introduction! Of course, we’ve known each other for some time through following each other on Instagram. But it’s always nice to get a refresher. 🙂 What does your role entail as the co-chair of the North Jersey chapter?
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That’s great news! Do you have a doctor who knows these two medications? They should be able to tell you the risks involved so there are no surprises for you. Like Deann said, these medications affect everyone differently, so it’s hard to answer your question. I’ve heard GI issues are a big side effect of Evrysdi, and because I have enough GI issues to begin with, I’m sticking to Spinraza.
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To echo DeAnn’s sentiments, you are certainly not alone. I go through waves or what you’re explaining. Lots of hills and valleys for me. Right now, being in hibernation mode, I’m in a valley. Winters usually do that to me. I have little to no motivation right now, but I force myself to do things that make me happy or feel connected to the outside world. That’s why I love these forums. Rest assured, those of us here *get it* and are here to support you.
Have you looked into assistive equipment now that your arms have weakened? Perhaps eye gaze technology or voice recognition equipment could help give you more independence.
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I thought that was the strangest thing, too. It was performative activism at best. I’m happy there were sign language interpreters for those who needed it at the game. But with millions of people watching, you think they would have shown it on TV, too.
Now I wonder what accessibility is like at the Super Bowl locations. I might have to do some field research next year. 😜
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Oh shoot! I didn’t realize we were officially going forward with the book club. I haven’t read it yet. How did the meeting with your state representative go?
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Thanks for introducing yourself, Rudy. It’s always great to get to know the members in this group. I’ve always enjoyed web design and considered following that career path. But like you, I worry it’s more of a hobby for me. How did you know it wasn’t the right fit?
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Hey Anna. Unfortunately, I can’t answer your question because I’ve never heard of these techniques. Are they supposed to help with swallowing? I’d love to hear more if you don’t mind!
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I keep forgetting to watch this movie. I’m going to make a note of it. The weather is cold and rainy here, a combination my body detests. So I’ve been spending lots of time at home under a blanket.
I’m not a big movie buff, but I did finally watch Barbie. If you can get through the first 15 minutes, it’s actually pretty good. Oppenheimer is coming to Peacock in February, and I’m excited to watch that too. What type of movies do you like to watch?
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I absolutely understand where you’re coming from. I feel this. Hang in there. if you ever need to vent, we’re here.
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So so true. And I’d love a facial if I didn’t have a tube taped to the right side of my face. 😆 I wonder if I could get half a facial for half the price hahahaha.
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I know what you mean. It absolutely can feel that way. Do you have any ways to recharge?
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I feel ya. My nonprofit is planning some in-person events for the first time since COVID, and we’re a little rusty. 😅 We’re slowly dipping our toes into the water again, and it’s really exciting!
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I love that! That’s a perfect analogy. 😂
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Transportation-wise, the East Coast was incomparably more accessible than the West Coast when I went. I visited Fort Lauderdale and had a wheelchair-accessible taxi within five minutes anytime I wanted to leave my resort. I was also able to rent an electric beach wheelchair in Miami, which was a first for me.
Then, I visited St. Pete Beach on the West Coast, and transportation was a nightmare. I was stranded at a restaurant once for hours. I finally got back to my hotel via a transport ambulance. I’m pretty sure our driver had a little too much to drink that night, too. The whole ordeal was a disaster. I wonder what other locations are like on that side of Florida.
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Very true. Do you live on the west or east coast of South Florida? I found there to be a stark difference between the two coasts in terms of accessibility when I vacationed there.
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Exactly! You described the struggle perfectly. Since writing this post, I’ve tried putting a board under the yoga mat. My back was more comfortable, but my tailbone started to hurt after a while. I think the surface was just a bit too hard. Though my bed is most comfortable I’d prefer not to lay there all day. Still trying to find that sweet spot I guess.
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Interesting! Now that I’m thinking about it, my symptoms have been getting worse around my periods. I’ve had vestibular problems off and off since I got a concussion in 2017. But lately, my symptoms have been more prevalent. I’m going to try to notice any patterns between my hormones and symptoms now that you mention it. I think you may be onto something! Did you ever take anything to alleviate your symptoms?
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According to my googling, it’s in New Orleans. I’m not a big fan of crowds either, but I would definitely run over some toes to get to the Super Bowl.
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This might sound funny, but the best way I’ve found to work through it is if someone gently squeezes my head. That or applies pressure at specific places on my head. I think my crystals are out of whack because I get dizzy when I move my head in specific ways. (I.e., I can’t roll over without the room spinning). So it’s likely my crystals. I’ve been to my vestibular doctor, had vertigo PT in the past, and did all the maneuvers to try to get better… nothing has ever worked on me.
What I don’t understand is why I’ve been feeling this way for so long. I also have fluid in both ears and some minor jaw pain. Every now and again, I have sinus pain, too. Usually, this only happens in the spring when allergies come. Considering it’s only February, I may have a long road ahead. 😑
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Where can I get an invite for this epic adventure? I’ve always wanted to go to the Mediterranean Sea.
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Thank you for sharing! If you get any more information, I’d love to know more. I’m meeting with my therapist next month and am going to bring this up to her. Are there any specific questions I should ask?
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I’m sure that’s a contributing factor. My caregivers just got a recent pay increase because the minimum wage rose. However, it’s not $20/hr. It is close though. I wonder what the rate is like across the states. Though I’m not sure that state-to-state makes a difference in the quest to find good reliable caregivers. It’s slim pickings out there.
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That would be my logic too!
So far so good. I haven’t been sick. However, I’m at the hospital frequently for appointments so I’m playing with fire. The hospitals are at max capacity in Boston with the flu and COVID. Makes me so nervous. 😬
How are you feeling post-bug? Even though those things only last 24 hours, I find it takes me forever to bounce back.