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Sorry to hear you’re dealing with this. It’s not something I’ve struggled with so don’t have advice for you. You’re not alone though. I know a lot of folks who do struggle with it. Seems like everyone has to do some trial and error to figure out what works for them. It’s gotta be frustrating.

Maybe that’s the ticket. I need to enlist someone with insomnia to purchase the online radio auction items that get restocked at 4 am every Thursday and sell out before I can get out of bed.

Did the TS drop help or hurt your insomnia?

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Glad to have you here. Please chime in on any of the conversations new or old. Sometimes a fresh perspective is just what we need.

I admire math wizards. Somehow I made it through college algebra and squeaked by pre-calc just barely. My professor was from China and said he learned English while getting his mathematics degree in Russia. Needless to say he was a bit tricky to understand. Fortunately I’m used to a challenge. What was your favorite to teach?

You’ll have to tell us more about Project Gameface. It sounds interesting.

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That’s such a fun age. My nieces loved wheelchair rides. For some reason they enjoyed house tours. I’d pretend I was the train and call all aboard. We’d come up with fun names for the rooms. For example the living room was the room of life. It was always fun when we got to the bathroom, ha ha. Eye spy was a good game too as well as hiding a treasure and playing hot/cold to find it.

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Ugh, my primary left, so I’ll be doing this soon. Honestly I never know what to tell them. What’s the most important thing you bring up?

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Sorry to hear you’re going through this. I don’t have advice for you, but wanted to share one of my favorite SMA News Today articles by Halsey Blocher. Even though I don’t know what led to your situation, I know others have had similar experiences. Hugs to you! A hospital stay is never fun.

smanewstoday.com

It’s Time to Stop Stigmatizing Lifesaving Tracheostomy Tubes

A commercial uses tracheostomy tubes as a scare tactic to prevent people from smoking. Columnist Halsey Blocher explains why this is harmful.

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Good to hear from you again! How exciting to be looking at treatment options. It’s really a personal decision and depends a lot on the facility you go to as well. I’d certainly have a conversation with your doctor to see what they suggest. Personally the logistics of getting an injection every four months was why I switched from Spinraza to Evrysdi. Although I have some GI issues with Evrysdi it’s manageable. For me a daily medication is just easier.

As far as cost, both are astronomical. What you pay really depends on your insurance and what programs you’re on. For me Evrysdi is covered 100%.

Good luck! Keep us posted.

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You’re not alone! Know there’s a whole community here that gets it. For me it’s kind of a seasonal thing. Especially when I’ve been in hibernation mode for months on end. Sometimes I have to force myself to do things just so I don’t get stuck in a rut. Do you connect with other gamers? What do you play? I know there’s a few here in the forums who enjoy that hobby.

Another thing I try to do is focus on what I can do, not dwell on what I can’t. Not always easy when you see people doing what you wish you could. I’m getting to a point where I can be happy for them, but I can be okay doing my own thing. Even if it’s just watching a movie or listening to music. I forget, have you shared what music you like?

Even though I do what I can on my own, needing help is inevitable. When I have to ask for things I make a mental list of who would be the best candidate for the task. I try to spread the “love” so nobody gets burnt out. Some folks I just don’t ask because their attitude rubs me the wrong way. If nobody wants to do it and I can’t do it myself it just doesn’t get done. Most of the time though if it’s important I’ll figure out a way.

There’s also no harm in talking to a professional. At one time Cure SMA provided a program where you could set up a few online therapy sessions. Not sure if they still offer it but something to check into if it’s something you could benefit from.

Sorry about the novel. I can be a bit long winded.

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Funny you should post this. A few weeks ago I had what I chalked up as a 24 hr bug. Dizzy, nauseous, flush. It was terrible but only lasted half the day and was better after a nap (out of the ordinary for me.) Since then I’ve had a couple random dizzy spells, but thankfully they subside if I just close my eyes and rest for a bit. Now I’m questioning what’s going on. Not enough to do anything about it, but I’m hoping it doesn’t become a regular occurrence.

When you have your issues what do you do? The first time I had to have Mom come because I needed to lie down. After that incident I’ve managed in my chair. Can you work through yours? I have to stop everything and just chill for a while.

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Thanks for the input! I apologize for not giving a better timeline. A video was supposed to go out inviting folks to read along with me for February but I don’t think it’s been posted yet either. Since it’s not really a time sensitive book, I do encourage anyone to read it when they get a chance. I’ll post more thoughts on the book in another week or so. You’re welcome to chime in on the discussions anytime.

Tracy, a Zoom meet is a fantastic idea. We’re working on getting approval to set something up. I’m not sure if it’ll happen, but we’ll keep you posted.

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Hey neighbor! I’m in Minnesota. At 44 myself I still don’t know what I want to do when I grow up. It sounds like you’ve had a fun time figuring it out though. I have a pretty good gig though, so can’t complain. The vending thing sounds interesting. You’ll have to tell us more about that.

Marsellus sound fabulous. Does that breed have a long lifespan? My pia’s are two cats, Boogie and kitty, along with my service dog Horton. Boogie takes the cake, but as you said I wouldn’t trade them for the world.

Not big into gaming, but I know we have a lot of members who are. With your yacht and my private jet we could go places. What’s the first stop on your trip around the world?

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Once upon a time I did Vital Stim along with speech therapy in hopes to improve my swallow. At the time it didn’t really do much. That was prior to treatment though. I’d be curious if that would make a difference. Keep us posted if you try it.

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When I did the VitalStim it was daily while I was in the hospital and weekly, I think, after I went home. It was an interesting sensation and I could see how in combination with treatment could be helpful. I didn’t have a choice in brand, I guess it was what they had.

Your comment about not being able to regenerate neurons reminded me of a conversation I had with my neurologist when I first started Spinraza. He mentioned that it’s not really known if the neurons are dead or just dormant, so it’s worth a shot. I thought that was an interesting perspective. I’m thinking that’s why treatment seems more effective in kids, but who knows we might be able to wake up some of those neurons.

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I use the scissors trick quite often. With 3D printers maybe there’d be something that could help, but I’m not creative enough to come up with the solution. What are your favorite art mediums?

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Yeah, it’s definitely only something you can do as a special treat. Unfortunately the options are pretty limited for food delivery services in my area. Hopefully it will grow in demand and become more popular. Is there a specific one in your area you gravitate to?

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Thanks for the suggestion. Unfortunately those options are limited in my area. Yes, I agree the world is more accessible than ever, that’s why it’s so sad for me to see it slipping backwards. There’s a Mexican Market opening soon and the first thing I noticed was the step.

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I’m not familiar with this system. Something to look into. An SPC intrigues me but my brain focuses on all the issues I could have with it. The two reasons you mentioned topping the list. Other than lack of coverage what would be the downfalls or challenges with PureWick?

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Oh yes, the Princess and the Pea analogy hits close to my heart! I even did an art project reflecting it once. I do have to replace the topper every year or so because of that permanent dip created. Even though I tried rotating it, it’s right in the middle. I always know when it’s time to replace it as my hip starts bothering more. I can never figure out why my hip is bugging me, then it dawns on me.

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I don’t follow closely, where is it supposed to be next year? The crowds would be too much for me.

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Get reading girl! It is a pretty easy read, so I do recommend giving it a whirl. Are you an avid reader? If you are you’ll fly through it. Even if you aren’t I feel like it’s worth tackling.

My meeting with the legislator was…interesting. I have a vlog coming out where I express my thoughts. I wouldn’t necessarily say it was fruitful, but I’m glad I went out of my comfort zone to do it. Of course I’m rehashing it in my mind and thinking of 100 things I should’ve said. What issues would you have brought up?

I was disappointed to learn that my state passed the delivery tax I had heard rumblings about. Although there are exemptions, basically retailers have to pay a $0.50 fee on each transaction that is $100 or more. I’ll be curious to see if this fee gets passed on to the consumer. Does your state have anything like that?

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Do you mean shorter time as fewer days, or fewer hours? I’ve seen it both ways, some folks prefer a chunk of time where others prefer little snippets. I try to be flexible but that’s backfired on me as well. Right now I’d be happy if I could find one or two. It’s for every other weekend though, so that’s the hesitation maybe.

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Thanks for the info. I’m scheduled (finally) to meet with my representative next week. Any tips or suggestions?

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It’s funny you should mention establishing a long-term relationship with an agency. I’ve actually been with this one for over 20 years. Last fall they denied an overtime request for a caregiver to attend an appointment with me. I was livid because they approved it without hesitation the previous year plus they know how difficult staffing is. My appeal was successful, but how frustrating.

Interesting how tourism plays into staffing. I’d never have thought of that. Here I usually find staffing easier in the summer. Except over holidays of course. Just curious, how cold do your winters get?

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I’m sorry to hear you’re struggling as well. It sure isn’t easy. Thanks for sharing!

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Thanks for sharing. I’m holding off for now as I really doubt it’s a beneficial resource where I live.