kelly-miller
Forum Replies Created
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I believe they make a version for Mac, but I’m not 100% sure. The physical version is usually a little more expensive than the downloaded one. I got the downloaded version and had no problem adding it to a different computer when my old one died. They keep track at the company of your purchase, and you can even go online to see the date. I had a few troubles in the beginning using it with chrome, especially on gmail, but there’s an extention you can get that fixes most of the problems. They’ve really tried to make it compatible with different platforms. It’s not cheap software, but I’ve always thought it was worth the price.
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I used Dragon NaturallySpeaking for 20 years before I had to get on a vent 24/7 last year. It is the absolute best when it comes to speech recognition. It has no equal in its ability to do everything a regular mouse can do on top of being able to discern what you’re saying. One thing I would recommend with any of this type of software is to invest in a good microphone, either on a headset or freestanding, desktop one. You’ll be surprised the difference spending a little time researching mics will make in the software’s performance. It’s also important to spend the extra time in the beginning to train yourself and the software. Dragon comes with built-in training exercises that it will walk you through. It’s super easy to use and even comes with the ability to make your own macros for shortcuts. And if all that isn’t enough, it comes with a cool name! Check out Dragon.
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Has anybody looked at any of the info on all the things happening to people who have had the “vaccines?” My husband refuses to get it. I will NOT be getting any boosters!
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I’ve also not had my usual bouts with pneumonia since starting Evrysdi in December 2020. I feel like I have more energy and less issues with allergies and colds. Unfortunately, I found out today that my insurance has denied my continued use on my recert. My Dr is filing an appeal, so we’ll see what happens.
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I use Zyrtec after trying Claritin. I think it’s all a personal preference and whatever works for you best.
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Someone has been brushing my teeth for me for the last 27 yrs. It was first my mom and now my husband. We use an Oral B electric toothbrush, the one with the round head b/c I feel like it fits in my mouth. There are several kinds and shapes of electric toothbrushes out there, and they’re not expensive. Find one you like for somebody to help you. You’ll be surprised how great your mouth will feel!
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My pain got to the point of no alternatives to pills was working, and marijuana was only for certain problems, SMA was not one. Unfortunately, I had to go to meds, and I have been comfortable ever since 2019 with no sleepy/sick/out-of-it side effects. I used to think I was a bad person for resorting to meds, especially with our country’s opioid epidemic, but I couldn’t bare the pain.
Adam, I totally get what you’re saying about the chewing and the swallowing lottery, but getting rid of those has been the best part about a mic-key g-tube!
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I developed severe hip pain around age 45-ish. I went to the MDA neurologist b/c I wasn’t sure if it was SMA related or just from sitting in a wheelchair for the last 40+ years. He told me that b/c I was part of a set of SMAers that was beginning to live longer for the first time, it was difficult to tell which caused the problem, the sitting or the SMA. Regardless of the cause, there was nothing to do about the pain other than stop sitting more than 4-5 hours a day. Well, that wasn’t going to happen! I had a f/t job and a social life.
I have to say I was pretty angry at that doctor, but I later calmed down and understood what he said. His only other suggestion, which I didn’t like, was pain meds. I wasn’t really into taking pills, so I tried other things first, the most helpful being an injection and radio frequency ablation. This was done at Shephard’s Spinal Center in Atlanta where I lived. They were strictly for spinal cord injuries along with neurological issues such as SMA for one. This doctor knew what he was doing! The shot of steroid in my back, in my spine in the lower part, did stop the hip pain. He said it would probably only last a couple of yrs tops, but this is going on 13 and it hasn’t needed repeating. Unfortunately, the ablation did not work on the sciatica that developed shortly after the hip. B/c of my spinal fusion, it was impossible to get the medicine into my spine between the proper vertebrae. He tried me on a tens unit, but that didn’t work either. The only answer at that point was pain meds b/c the pain had gotten so severe it made me cry.
I won’t bore you with the progression of meds thru the yrs. I’ll say I’ve been on heavy duty opioids for the past 3 yrs, and they work tremendously. I take extended release morphine twice/day and hydrocodone 3x/day. It’s the only thing that’s gotten rid of the excruciating sciatica. They don’t make me sleepy or out of it, just help me deal. Along the way, I’ve tried life without the meds a few times (usually during hospital stays when non-SMA or non-pain mgmt Drs thought they knew better), but it would go back to unbearable pain. As long as this works and doesn’t make me out of it, I’ll stick with the plan.
The most important thing to remember is that everyone is different. You may never have pain, someone may be able to fix it without meds, or a dose of tramadol might do the trick for you. Don’t worry about something that may never happen. It’s also been those almost 13 yrs since I first saw that neurologist. Hopefully their knowledge has changed (I haven’t heard of it yet.)
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I definitely think the brain is constructed in a way to keep us from reliving trauma. It’s how the brain protects the body from constantly going thru that heightened state over and over. As to why you can’t remember the good times, I don’t know. Collateral damage, maybe?
I can still remember my good childhood events and even some bad ones. However, I have forgotten things around my horrible illness last year when I went unresponsive several times and my body endured an emergency trach and becoming permanently vent dependent. I’ve lost a lot of my memories from the months before that and even a few afterward. With time, I’ve regained a little bit, but others may be lost forever. From what my husband says my body, and probably my brain, went thru a lot of trauma. I’m going to let my brain decide what I need to know, I think. I certainly don’t want to relive those bad times, but yours might be different.
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I hadn’t ever heard of Notion before you mentioned it Alyssa, but I’m going to check it out now!
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My takeaway: Stop wishing and wasting time & energy on things you either can’t have or that won’t be the end all, be all after you get them. Take a minute to grieve what you’ve lost, then learn a new way to a path that can be equally rewarding with the abilities you have.
As SMAers, we’ve all learned to use “workarounds” to get things we can’t reach, turn on, or desire. But there are always some who, like the main character, expend lots of energy on wishing, dreaming, and resenting things what will never be. Thus, missing out on how to do a workaround and enjoy it in a different way. That’s why I think these groups and forums are such great opportunities for those of us to continue to show our own unusual paths to our goals. And for others to let go of the resentment, the bitterness, and put all that excess of energy into forging their own route.
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I use ginger if the problem is nausea.
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This column really hit home with me. I’ve had my g-tube and a SPC now for over 5 yrs, and I love both of them, even when they’re a little off. On the other hand, I just got my trach last January due to an emergency hospital stay. I didn’t get to make the decision, since I was in a drug-induced coma. My poor husband had to give the go-ahead b/c the doctor told him I would die if they didn’t do it. He debated, knowing I had said no, never when we had those previous “what-if” conversations. But it’s a whole different situation when death is on the table, staring you in the face!
It’s taken me 15 months to get over my own stigmas of having a trach. In that aspect, I’ve been glad I had a reason like Covid to stay in the house besides all my fears of what could go wrong. In the last couple of months, I’ve learned to go to the beach, go on a day-trip, and make my way around outside with the dog. People stare a bit more than before, or maybe I just was used to it. The down side is not being able to talk, b/c I’m not strong enough to put air through a speaking valve, and I’m on a vent 24/7. The amount of equipment I have to take going anywhere I go has tripled, and getting dressed takes a little longer in the morning too. But you know what? It beats the alternative – being DEAD!
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I appreciate your column on this, however I must be the oddball in the group because I never dreamed, or thought about it for that matter, of a cure, treatment, or walking. I guess my parents instilled in me at a very early age an identity as a disabled person. In my 20s and 30s, I questioned that approach and even got a little angry at the by-product that was the removal of hope in a child so young.
But now in my late 50s, I have altered my perception and come to understand my mother’s way of method. She was trying to motivate me to be the best person I could be and strive for whatever I wanted with the many abilities I had. Thinking about a cure or walking in the future was never in the picture. While past generations didn’t come into my realm of existence in that manner, I did wonder around telethon time every year what if the ones who had died had lived instead.
Now that I’m on Evrysdi myself, I have thought about the SMAers who came before me. But it’s been in more of a where would the world be now if all of the treatments had come along back then kind of sense. What advancements would these therapies have already caused to happen in the medical field? What contributions to society would those with SMA have made if they had been able to live their full lives?
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Another vote for overheated! Just last night I stayed out in the cold with some friends, and I could barely drive my chair back to the van. I would do anything to not be cold!
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Lupa, that’s another extremely frustrating aspect of the whole thing. I can’t decide whether to cry or scream when I clearly know how to do something, and would be happy to tell someone how, but I can’t do it myself b/c of strength and mobility issues!
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You’ve fought a hard battle, and you deserve a few screams for a positive outcome. Congrats!!! Insurance company 0, warriors with SMA 3,000,000,561, and counting.
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I totally get what you’re saying DeAnn about not knowing where to draw that line between getting what I need and asking for too much. Family doesn’t like taking money unless it’s a huge job, so how do I show my appreciation for those smaller jobs that seem to pile up? I’ve found that when I want to give thanks for several things somebody has done, but money really isn’t appropriate, I give them a small gift that meets one of their needs. Whether that is an evening of child/pet sitting or a gift card to dinner/something they love/movie tix, it shows your gratitude without offending anyone! I’m sure they know you’re on a limited income and wouldn’t expect anything extravagant. Besides, things from the heart mean so much more. Good luck!
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This one hit me because I’ve had to fight off family and friends to get what I wanted. Swimming in a pool or the ocean isn’t worth all the hassle and, more importantly, the fear involved. Really getting in any body of water meant for recreation is not something I’m willing to do. I’m terrified of getting in the water and fear my head will go under. I don’t even like the handheld shower squirted in my face. Everyone is always telling me it will be ok, they’ll hold me perfectly. It’s not that I don’t trust them; I just don’t think they envision all the possible pitfalls that could happen. Unfortunately, I feel like I’m disappointing them when we go over to a friend’s house who has a pool, but the fear is far greater than any potential fun, and it’s just not worth even trying. At least I’ve learned to put my foot down and stand up for myself!
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They just released studies showing the expected results from Evrysdi aren’t going to come for 1-2 yrs. I didn’t take Spinraza, but I’ve been on Evrysdi for4 months now. My husband thinks my breathing has gotten better, stronger, and we’ll find out Thursday when I go for a pulmonary function test. I feel stronger in one of my feet and my trunk area, but that could be wishful thinking. I haven’t had any symptoms since about the 3rd week. That was stomach upset that ginger took care of.
Good luck with your decision! I don’t think anyone else’s experience with either medication is applicable to you. We all have different bodies even tho we all have SMA. Our reactions are going to be different too. All you can do is get the info, which you are, and do what is best for you according to all the factors.
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I think it should help if you’ve even gotten your 1st vaccine shot. My husband read that several countries in Europe have discovered that aspirin, just plain aspirin, reduces the Covid symptoms and keeps people from getting so severe they end up on vents. Worth a try. I don’t know why we haven’t heard about this, except the docs here push Tylenol.
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On my way to get 2nd next Wednesday. No problems with 1st.
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Mine was also a big nothing. I didn’t take anything going in, and I had no symptoms of any kind afterward. The only thing was my arm was sore for a few days. I had the Pfizer.
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It will be to go downtown to our old part where I live in St Augustine, Florida. There are all sorts of shops, places to eat a variety of treats, and the people watching of tourists from all over the world is never-ending!