kelly-miller
Forum Replies Created
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I’m so sorry you’re having trouble with your fwd on your new chair, DeAnn! There’s nothing worse than the excitement of a new chair being squelched by a major problem like how it drives. After 10 yrs of mid-wheel drive, which I loved (sorry), I also had to go to fwd. I had the exact same issue with those stupid little wheels on the back. I also had to watch anything I hung on the back such as a backpack or grocery bags. I have to say I did get used to the point of not hitting the walls, door frames, and table legs, however I counted down the days to the allowable 5 yrs to get rid of the dreaded fwd so I wouldn’t be running into and over things such as my poor Lab mix, Rex.
One thing to be careful of when you go outside is the way it hits bumps. Large bumps, like a low curb, are pretty much okay, but those medium-sized ones can be tricky. This would be a bigger crack in a sidewalk or a baby crater in asphalt. I hit the first one as I would’ve with my mwd and almost threw myself out on the ground. Until you get used to it outside, I would take everything very slowly.
I’m currently trying to get used to my new chair I received about a week ago. While I’m having trouble getting comfortable in it, I’m super happy to get back with my preference of mid-wheel drive! I know you’ll get used to yours; there’s always that serious adjustment period where we wonder if we’ve made the biggest mistake of our lives with any new chair, but I know you’ll get it! Let me know if I can give you anymore tips.
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I didn’t know they were married! How cool. I got a little tired of it these last couple of seasons, but it was good before that. We just got done with The Crown. Even my husband liked it. Or there’s Yellowstone, or Killing Eve.
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Florida just opened up for those with all pre-existing conditions, and Mayo, where my doctors are, started giving the vaccine. I got an appt for March 5th, receiving the first dose of the Pfizer brand shot. It went off without a hitch, and the only side-effect I experienced was a sore spot on my arm for several days. I’m due back for the 2nd dose after 21 days, and I have an appt for March 31st. I found that this all was less problematic than with the flu vaccine I get every year.
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I’ve seen a dietician one time, and that’s all I found tolerable. I tried getting information regarding switching from my formula due to severe stomach pain that had developed over time with this same fiber-rich formula. She didn’t want to acknowledge at all that it could be the extra fiber over the previous year causing, not only my pain, but possibly my severe constipation. I wanted to talk about changing to a real food blend product designed specifically for tube feeding. She hadn’t heard of it and didn’t have anything good to say about real food for me!
I was angry enough to take this back to my GI doc and request we drop the whole dietician nonsense. While I understood this was the same as a doctor not knowing about my SMA needs, I couldn’t deal with someone who refused to accept my inner digestive workings had not changed just because my swallowing mechanics had. There was absolutely no reason I couldn’t still have real food pureed instead of formula. My GI was cool like that and switched me off the fiber-rich formula to the real food blend, and she added daily vitamins. I’ve been on this food for the last 4 years with no more stomach issues and a reasonable bathroom schedule. Never again for a dietician, because I know my body better than they do. And so do you DeAnn, even if you decide to work with them!
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Hey Kevin, is this Jeremy Camp the Christian singer???
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What about a really cool backpack or side bag?
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I’m so sorry Alyssa, and I definitely feel you! One of my best friends just told me that she’s not moving here near me in Florida, but she’s decided to go to another state. Still a 14-hour drive away, just like where she lives now. I’m not doing as well as you with encouraging her toward her new place. It makes me sad and a little angry because we had talked about plans of things we would do together. But as Kip says one door is closing, but another bestie is definitely moving here! That will be a salve on my wounds, but it won’t come until I’ve already felt sad.
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I got it didn’t see your link to it. I would point out they already approved someone on a vent f/t, with no plan for measurement, and is in her 50’s. I though the people decided, Accredo?
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What’s your Twitter name?
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I’m very sorry you are in the position you’re in with your hip. I know it sucks to feel like you have no control over your own situation. I know it feels pretty depressing, to first lose your strength over something so trivial as the loss of a tablet, and second to have an incredible amount of pain that’s going to come back, and you can’t really stop it. I’ve been there.
A year ago almost exactly I went to the ER with a severe pneumonia. To make a long story shorter, I ended up on a vent, I was in the hospital then rehab for a total of 4 months, and I got out with no way to talk because of the kind of trach they gave me. Not only did I get out with a need for a vent that I never had before, but I also had an intense anger because the doctors had made some of the most stupid decisions regarding my care, refusing to listen to my husband or my my family.
That anger quickly turned into depression that put a black tarp over my entire world. Everything had changed without my consent; I couldn’t change anything back to the way it was. I really do understand how you feel and empathize with you. I’d didn’t tell you all this to say I’m worse than you or to make you feel worse about your own situation. I’ve told you this to say it will get better. Maybe not tomorrow, maybe not next week, or maybe not 6 months from now. But it’ll start with a small streak of light at the end of the tunnel, and that streak will get bigger a little at a time. One day you’ll notice, the whole tunnel will be lit. The rest of the world around it might not be yet, but it’s better than it was, and it’ll be a little bit every time you turn around.
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Fantastic article Brianna! It really made me think about those special moments in relationships that were part of my memory-bank because of a particular nostalgia. While you made my mouth water with toaster strudels, it was not just this but other things also that I shared with my maternal grandmother when she lived with our family for 13 years of my life. Most teens now don’t want much to do with their families, but it was a different time for us baby boomers. My Gran (her name after graduating from Nanny) and I bonded over all kinds of comfort foods. I was a budding foodie before either of us knew, or had even heard of, the term. She taught her third eldest grandchild about the staples of good Southern cooking. We loved a little squash casserole, ripe tomato sandwiches, and meatloaf with mashed potatoes, preferably all in one day. She was patient and caring as she explained what she was doing. We also shared conversation during this making of heartfelt food combinations. She was the only adult I ever let into my private world of friends and crushes. And she never abused that sacred trust. I think she’d be very proud of who I am today: a decent, intelligent, happy foodie.
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I truly think a sense of humor and a willingness to communicate, along with shared interests. Should we form a company that writes people’s dating profiles for them, DeAnn?
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Lupa, I read something yesterday about the vaccines (some) using viruses to get where they need to go. I immediately thought of Zolgensma, but I couldn’t be sure my memory was from that or a book I’d read (I read a lot of sci-fi and fantasy). Obviously it was real. I totally get what you’re saying about an immune response and it certainly sounds like it could be accurate. I just don’t have any background in biology to judge it with to say definitively. Good job though!
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I’ve pretty much been in for the yr as well, with the only visitors being my dad (who’s super paranoid about getting Covid, so I don’t worry about him) and one of my bestie SMA friends with her parents. My favorite aunt won’t even come to visit, and that one’s killing me. Pre-Pandemic, my husband & I were out to eat almost every night. Now, it’s just takeout from all around us. I feel like this hermit lifestyle has changed my view of the World, not to mention my personality. The outgoing, social-butterfly is in some kind of cocoon, and I’m not sure I’m going to easily come out. It seems so scary out there right now, between the Virus, people arguing about wearing masks, and crazies wanting to fight about politics, I’m anxious about leaving my house. The whole thing has me vacillating between feeling content with the coziness of my cave and sadness for the loss of my former self.
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Florida is only letting over 65, long-term care, and hospital workers deemed “extremely vulnerable” by the powers that be at the hospital. I think it’s crazy that all frontline workers and those with diagnosed medical conditions “deemed extremely vulnerable” aren’t on the list yet. Of course, it doesn’t really matter since Florida has run out and all the appointments are booked up. Craziness.
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The website does say that respiratory infections and lung infections, along with sniffling and colds, can be caused in infants. But as with all effects, it depends on the individual.
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I’m taking it, and that was not one of the things they said to be careful of. I would think there’d be all kinds of precautions if that were true. Look on the Evrysdi website by Genentech. Everything that’s on there is exactly what they tell us when we start taking it. The common adult side-effects are fever, diarrhea, and rash. I haven’t had any diarrhea, but I have had nausea.
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Lupa, I’ve had gel armrests on 3 different chairs now, and I absolutely love them. They’ve kept my elbows and wrists from getting those horrible pressure sores I used to get from that hard plastic. That stuff should be outlawed! The gel is still firm enough to support, but it’s also giving enough to keep it from hurting. You might check those out. I don’t know what kind of chair you have, but both my Permobils and now my Quantum have had them. You should be able to get them.
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DeAnn, I’m dealing with something similar. My new chair was delivered before Christmas minus the seat cushion and sip-and-puff controls. They were forgotten when the ordering happened. I wasn’t upset because I like being able to study the chair before getting into it, having that excuse of missing parts. But at some point, it gets to be too long to wait. I know for myself, I’ve reached that point. I think we each have to decide for ourselves when we’re ready to squeak for what we want. I guess we have to figure out when we feel strong enough to fight for what we want. If it’s not your time yet, that’s okay. Don’t feel bad for not squeaking, but on the other hand, we can’t feel bad for squeaking for what’s rightfully owed to us.
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That really is frustrating I imagine, DeAnn and Kip. I’ve been taking Evrysdi since Xmas Eve, and my stomach issues are a little different. Like you Alyssa, I normally don’t go but every so often, but this is making me go about once a week. I don’t take anything for constipation or eat any differently to go more often b/c my body is adjusted to that rate. I would suggest cutting way back on any “assistive” things in that area (Kip, have you tried no Miralax?) just to see how that works. I’m certainly no doctor, so these are just suggestions when I say them.
My stomach problem has been nausea. At first it was to the point of wanting to throw up. I’ve trained my body, again, to not do that if I’m sitting up in my chair. I can’t stop it if I’m laying down, so maybe it’s really a gravity thing. Anyway, that severity died down after about 2 days, and now it’s gotten to a slight feeling of blah queasiness everyday after I take the med. I’m into some natural remedies (altho my dear SMA friend who really is into them would probably beg to differ), so I take a little nugget of crystallized ginger. This is in the spice aisle during T’giving and Xmas, otherwise you might find it there or in the baking aisle, at least at my grocery. It works splendidly! Maybe that would help with diarrhea.
DeAnn, I completely understand what you’re saying about your muscles burning. While I don’t have that exact feeling, mine want to move! I have this sensation of wanting to do something. Normally, the only things I can move other than my facial muscles are my fingers, a little. Now on a good day, I can move my right foot, albeit a very small amount. It’s pretty cool! It’s only been 2.5 weeks, so I’m not getting my hopes up on that. But this other feeling of “wanting to move” is there quite often. It’s like my brain is telling the muscles to get ready to do something! I’m cautiously optimistic. Anyone else experienced this weirdness?
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Well, I have to say Brianna that probably takes the prize! Was this your personal doctor or was it Genentech? I can’t imagine, or maybe I can, what I would say if my doctor told me something similar to that. I’m afraid I wouldn’t be very nice; however he would be within the parameters of his job, easily saying it’s how he’ll determine if he thinks you’re doing it for the right reasons, are a good candidate, understand the seriousness of taking a brand new drug with a huge price tag, blah, blah, blah. Hopefully it isn’t the 1st time he’s asked equally strange requirements of you b/c it would mean this is the type of Dr-patient relationship y’all have. Just remember, you always have the right to change doctors.
If it was Genentech … wow!
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Thanks DeAnn.
I applied for a grant thru Team Gleason. Steve Gleason is an ex-football player for the New Orlean Saints who was diagnosed with ALS a few yrs ago. He started this foundation with some other NFL friends to help those with ALS to figure out the new world of disability for them. It talks about things like different aspects of wheelchairs, beds, computers, vans, and things like resources for the individuals and/or caregivers/spouses/family. The website explains about the grant regarding seat elevation and other features that really are “medically necessary” but won’t be covered by insurance.
They don’t specifically mentioned SMA, but that didn’t seem to be an issue. I’m guessing it’s b/c SMA is related. Once I was approved, (see post above), they sent the money straight to Quantum. I didn’t have to deal with the money at all.
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Congratulations DeAnn! Definitely let us know about it.
I’m scheduled to get my first dose on Tuesday. This will be my only treatment b/c I opted not to go for Spinraza. I really didn’t want to deal with the injections since I have so many bones in my back from my spinal fusion. I was also extremely worried about the side-effects. I couldn’t get the idea of severe headaches out of my head, so to speak. Now, Evrysdi is a liquid that goes in my g-tube. Sounds like they understand SMA people.
I was told yesterday I would have a $70 per shipment co-pay, but we applied for financial aid and got it for all of the co-pay. All I’m going to have to pay is a shipping fee every time of $5. Do you have that DeAnn?
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I just ordered a new chair, and I was told insurance would not pay. Since it’s been denied every time on several different brands and with several vendors in the past, we didn’t even try (I have Medicare as primary and private as secondary.) My guy at NuMotion suggested a foundation that I never would’ve tried b/c it’s not directly for SMA but focuses on ALS. It was a piece of cake! I had a 3-minute interview with a very nice and friendly woman who said she’d let me know in 1 day. She did, and I was approved just like that! I was amazed at the ease of it all.
I don’t know if I’m allowed to say the name of it here or not; maybe a moderator could let me know if that’s allowed. If so, I’d be happy to share!