robert-stump
Forum Replies Created
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I’m in the same boat, and for me feels like we are getting so close to being able to take the vaccine, and it would be terrible to get it now after working so hard to stay away from it! I know if I would get a bad case of it I would have a hard time, but honestly I’m more worried about my parents catching it because they would need to help take care of me during my recovery. They are in their 70s with various health problems so I’m having a hard time with thinking the happy thoughts right now. I feel like I should be happy right now too with the super positive news on the vaccines 🙁
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In a different forum, someone suggested the Vectario Hovergrip HGRPV26 which is available on Amazon. It is super flexible to attach to just about anything, and superstrong so it doesn’t just fall down after 5 minutes. The only complaint might be it isn’t long enough to get the phone exactly where you want it, but in the comments section the company replied that they are considering making a longer one.
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I would choose the money (with a caveat). Like most financial transactions like this one would need to estimate how much money over the remainder of your lifetime is most likely to be spent on one of these new drugs, then a formula would need to be developed to offer the recipient a one-time cash payment in lieu of the treatment.
For me, I don’t think a one-time taxable payment of $330,000 would be enough to have me forgo treatment, but it’s close. If, however, we were closer to $1,000,000, the answer is a clear yes. If I was offered $550,000 it would be difficult but I would probably say yes. Same if I was offered $120,000 per year for the rest of my life. No one knows the future, but without treatment I will be surprised to still be here in 5 years, with the treatment I’m estimating 15-20 years if progression is totally stopped.
We would each need to search our own souls to know the right thing to do, but yes I do wish that this “offer” existed even though it would be difficult to choose.
I suppose some only other questions would be whether the payment will affect my other services, Medicare/Medicaid/SSDI, and whether there would be any stipulations on how the money could be spent (housing upgrades, attendant care, transportation, etc.).
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Any chance of getting these included on Alexa’s Flash Briefing? That is what I listen to every morning and I would love to add it to my to my feed!
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I wasn’t able to join in today, I hope to catch it when it is posted on demand. My questions include potential long term issues we don’t know much about (retina damage), specific details on specific drugs/foods we need to avoid when on Evrysdi, and please give us some clarity on male infertility.
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I have been fighting with my neurologist at OSU since March to try to get me on it, but it’s like pulling teeth with him. First of all he had never heard of the EAP, and even after I explained what it was and gave him the contact another few months went by and he then claimed that it is a much lengthier process to be approved than expected. So, I called the contact information myself on the EAP website, and they assured me that if the doctor gives them what they need, it only takes 2 weeks after that for the doctor to receive the medication for me. So I got back with him and explained that this is ridiculous to have waited so long and have gotten absolutely nowhere, and now he is just ignoring me. I would go to the effort of trying to change doctors, but with Risdiplam’s imminent approval it doesn’t seem worth it. I just hope he doesn’t try to delay me actually getting on this stuff AFTER the FDA signs off on it! Shhh…
And, I don’t care about naming names, my doctor is Bakri H Elsheikh, MD. Does anyone else have any knowledge or contact with him that is a different experience than me? I just started going to him about 3 years ago after not stepping foot in an MD clinic for over 25 years, and that is who I was assigned to after Children’s Hospital in Columbus told me I was too old 🙂 I actually have not been impressed with him for any stint of these 3 years, but I did not expect him to purposefully deny me treatment.
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I’m going to follow this thread because I have so far only used android and Windows products, and I am curious if I am missing out on important features lacking in the ones I’m using. I know switch access features are way more expanded and useful in Apple devices, but I would like to know, for example, if an Apple TV is able to be used entirely through 2 adaptive switches?
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This choice is crystal clear for me, Risdiplam. I have purposely held off going down the Spinraza path (in hindsight, probably not the best idea) seeing Zolgensma so close to the horizon. When that failed to be approved for adults, Risdiplam was then just over the horizon, so here I am waiting years and years for that horizon to finally arrive. What a terrible day it will be if it isn’t approved for adults either and I will have wasted all of this time and strength for nothing…
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Those are 2 important topics you brought up, like you I am getting more nervous now that my caregivers are doing more out and about in the community, and I just know eventually one of them is going to catch it. Not only will I be without care for however long the recovery is for them, but the risk is very real of them bringing it to me. Can’t social distance too well when asking the caregiver to scratch my mustache. For a while I was having everyone wear a mask while here and wash their hands frequently, especially after using their cell phone or handling mail or something, but after 2 months or so of doing this it just seems so hard to keep up the level of preparedness that we all need to keep it from getting to me. I can be on high alert for 1 maybe 2 weeks, but what we were looking at at least early 2021 before a vaccine is even potentially possible? Honestly, 2 weeks ago I told them to stop wearing masks while they are here, especially now that the weather is getting warmer and I don’t use AC most days. Some of them looked like they were starting to overheat and they seemed miserable. I just need to keep my eye on the cases here in central Ohio to see if we are going to get a major spike like I fear we are going to. I may have to re-implement the disaster plan if it looks like we are heading south.
Your other question about disability representation is a real concern. So many state governments are going to be trying to squeeze extra money out of expensive programs to try to balance budgets in the coming year or so, and there is a much bigger program than Medicaid and waivers for home services. Hopefully they will take a look at the whole institutional nursing home costs and the inherent dangers with warehousing people like that, because I know way more money gets spent there than on home services.
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Everything in our lives must be planned. How different it must be to not think one tiny bit about the “task” of getting in bed tonight. I have no idea what it must feel like to just go lay down and start to fall asleep the moment you are ready.
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I tend to have lots of political discussion with my aides, but I try to come at things from angles that aren’t particularly easy to see what point I’m trying to make. I welcome lots of viewpoints, though most would understand which way I lean politically. I don’t mind engaging at all because I don’t get angry and I honestly do understand where different people come from and even, to a degree, why they believe what they do.
But getting back to your question, absolutely you have the absolute right to share your understanding of this coronavirus situation, especially if the other person initiated it. However, there are some people who do not want to hear anything against what they already know to be true, so perhaps try to ask questions that the individual may not actually have ever thought of to see if you can get them to actually think through what they are spewing. That way you can get your point across, hopefully without causing an argument.
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How do I feel about? SAD
In regular times, sure, I understand, and yes I understand the FDA’s desire to have the latest data so they can make the most informed decision, but now in these times? Times like these when the FDA is allowing off-label use of hydroxychloroquine just because he-whose-name-must-not-be-spoken says “what do you have to lose” even though no scientific data shows its effectiveness in treating COVID-19 yet? Times like these when those with comorbidities, including SMA, need all the strength they can possibly muster when confronted with a respiratory illness like this? Times like these when health-care rules are being rewritten on the fly, when HIPPA guidelines are ignored left and right, and when single-use N95 masks are being used for weeks on end and now “permissible” to be cleaned and reused 20 times?
I don’t know, maybe I just can’t wrap my head around the fact that science and data still matter when it comes to whether I can get this life-saving drug now, or not…
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Another example of how I make the routines useful for me is to launch applications that I just cannot get my Alexa to understand me saying. In every room where there is an Alexa device, there is also a Google Home. If I want to watch Buzzr TV on stream player on my echo show, all I need to do is say “Alexa 17” to my echo show. What this does is turn up the volume on the Echo show, and then she says “okay Google buzzer TV”, then she turns her volume back to 5. Now, on my Google devices I have a similar routine set up (they are called Shortcuts on Google I believe) that does the following when it hears the command “buzzer TV”… The Google volume turns up to 8, then says “Alexa ask stream player to launch buzzer TV”, then it turns its volume back down to 5. More often than not the 2 devices hear each other very well and I can sit back and watch the magic happen!
Take that, supposed limitations!
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DeAnn, if all you need to do is turn up the volume on a different Alexa in your household (let’s assume the other device has the following name: Office), here are the steps to do so:
Open the Alexa app
Open up the menu (3 lines on the top-left)
Choose Routines
Press the “+” on the top-right corner
Choose “routine name” and type something like “fix volume”
Press “Next” on the top-right corner
Choose “When this happens” and then choose “Voice”
Type your phrase you want to say to launch this routine, like “fix office”
Press “Next” on the top-right corner
Choose “Add action” and then choose “Device settings”
Choose “Volume” and then adjust the slider to your desired amount like 80%
Press “Next” on the top-right corner, and then press “Next” again to confirm
Scroll down (if necessary) to the FROM section and select “Choose Device”
Choose which Alexa to change volume of, “Office” in our example
Press “Save” on the top-right corner, then wait 60 seconds and then try it out
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Routines are actually pretty simple to set up, while at the same time being extremely powerful to make your Alexa devices do exactly what you want. Here is a very easy to follow guide which should get you started and ready to come up with some amazing routines just for you: https://is.gd/KqFBXF
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I 2nd the great days of old when Mastermind was the absolute best use of a smart device ever, I never used anymote but I get pretty good functionality with IR devices by voice using the harmony hub. Anymore, besides controlling my home automation devices, the most useful services I use are tune-in so I can be scared every day listening to CNN or MSNBC’s live broadcast, controlling some functionality on my firecube, and of course my flash briefing I need to listen to every morning while trying to take a poop 🙂
Actually, I take that back. Routines are something I cannot live without now. I have a hard time calling for help at night, so I sleep with a echo dot 3 inches from my mouth. It has a hard time understanding me when I’m laying down, but I have a few phrases that I can can choose from (inevitably one of them works) which will launch a routine in another room to get someone else’s attention. The routine turns the volume all the way up in the other room, then loudly says that Bob needs help and you should go save him!
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I can’t physically use any features on any phone at this point, so I will look for the one with the best voice control options. I have been sticking with Motorola for the last 3 phones I have had (The original moto x, and today the Moto X4). The original Moto X is the first phone to offer real voice-only activation by just saying a phrase, and the Moto X4 has Alexa hands-free these days. Of course, the Google assistant is also active so I have access to both assistants on one device. Additionally, Motorola has built in voice texting and replying when a text arrives, and offers the ability to answer the phone by voice. I’m not sure if other phone manufacturers offer these type of features, but for the time being I am satisfied with what this phone offers for me.
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I have an appointment with my neurologist on Tuesday to talk to him about trying to get on the “Expanded Access Program for Risdiplam in Participants With Spinal Muscular Atrophy (SMA)”. This program was announced early in February and the goal seems to get people (who need it sooner rather than later) access to Risdiplam before FDA approval. It is technically called a study, but the criteria for participation seems pretty broad and it appeared like the company is trying to get more evidence to present to insurance companies if/when the FDA finally does approve it. It is open for SMA Type 1 & 2 who are not currently able to receive other treatment for whatever reason, and who (in the opinion of the prescribing neurologist) would benefit by receiving the medication quicker.
My neurologist told me that there is a ton of paperwork for him to submit to allow his facility to participate in this program, but he assured me that he is going to try to get me signed up with it. I considered Spinraza about a year ago, and almost went through with it, but my breathing issues were concerning to my neurologist and I got the feeling that he wasn’t completely comfortable with me going through it. At the time I was finally scheduled to start the injections, the hospital where the injections were to take place had a breathing scare with another individual with SMA and they postponed all future injections until they could retrain all of their staff on how to operate various breathing machines someone may arrive to the appointment with. By the time they wanted to get me back in, I started hearing about Risdiplam and I thought I might as well wait since I was super nervous about the injections anyway. Hopefully, I made the right choice, but now with the coronavirus potentially being a stumbling block to even go to my appointment safely on Tuesday, I’m not so sure.
Anyway, for anyone else who is interested in asking their neurologist to see if they can get early access as well, refer to the following website: https://clinicaltrials.gov/ct2/show/NCT04256265
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Yes, I am freaking out more than I thought I would. I’ve always felt like I’ve come to terms with having a reduced lifespan, and I dread each winter season knowing that if I catch something bad it could be the one to take me out, but this feels more like a slow moving train heading right towards me but I am unable to move out of his way. Sure, there’s a chance I won’t get it, or even if I do it won’t be that bad, but I feel the same way about all of these so-called “underlying health conditions” that most of the people who have died from it have had. I need more details on which health conditions are the most difficult to survive this with, though with my severely compromised lungs and my general weakness after living 49 years with SMA Type II, I feel I am a prime target for this one.
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I have an ancient furnace as well (simple 2-wire system with no power), but I was able to add a battery powered Z wave thermostat to it so I could adjust the heat myself. It is my favorite smart home addition, but certainly not my only one. I have Philips Hue lights, Z wave relays making both my garage and my Open Sesame front door opener smart, voice controlled infrared transmitters to switch TV inputs, a Z wave siren to get the attention of my aides who might be dozing off, and a slew of other items. To make it the most useful for me, I purchased a cell phone with Alexa built-in so I can just speak to it without touching anything, but I also have about 6 echo devices scattered throughout the house. I also have tons of Google devices as well, but I find that the home automation services and control are much easier to configure and understand using Alexa.
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It makes me sad to learn that Zolgensma may not ultimately be viable for us adults, and yes it definitely slows me down when considering partaking in any future trials for this drug.
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You might want to go to an ENT so they can evaluate your esophagus and your swallowing mechanisms to make sure there isn’t some type of defect or webbing causing this problem. They will probably attempt to scope your throat or schedule you for a swallowing study with imaging. You may also be referred to a speech therapist who can give you techniques and exercises to assist with your swallowing.
Hello, given the nature of SMA, this might just be something you will need to just manage and try to minimize. I started having troubles like this 12-15 years ago, and unfortunately it has only gotten worse with time even going through all of the above steps with the ENT and a speech therapist. I have resorted to making sure all of my food is soft, I take tiny tiny bites, and I make sure I am very careful when swallowing and have plenty of liquid standing by.
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I find eye tracking almost useless for me. I’m one of the rare group who can’t seem to tolerate the infrared pulsating light spectrum in my eyeballs. After a few minutes of use (I use the Tobii 4c) I start to feel dizzy and lightheaded, so I can’t seem to use it long enough to actually learn how to make any real use of it. The few times I tried to click on things with my eyesight, or to try to type something by looking at the on-screen keyboard, it seems very flaky at best and would have a steep learning curve in order to get good at this. Unfortunately, I am getting to the point where I need something like this because I cannot use a traditional mouse for more than a few minutes at a time, and my voice is getting too weak for even Dragon NaturallySpeaking to understand me good enough. I am holding out hope for brainwave tracking becoming a real thing very soon!
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I know I am late to this conversation, but I thought I would share my thoughts as a 48-year-old who has SMA Type 2. I have actually been struggling with the thought of taking Spinraza myself. I initially did not jump at the chance, hoping for real-world evidence before undertaking the lifelong journey of periodic spinal injections. Now, I read about the amazing results of Zolgensma and I am wondering if I should wait for it or if I should “give up” and just accept Spinraza. I know, even reading that last sentence makes myself cringe because I have waited so many years for any type of treatment, why am I not jumping at the chance, especially since people in other countries are having a much harder time getting it approved and paid for?
But, I digress. The question at hand is what would I have wanted my parents to do given the opportunity presented in this thread? Would I want them to wait and hold off on giving me an immediate treatment that certainly would make a difference, for the chance to get into a trial for a super promising (okay, I am going to say it) potentially curative treatment 4-5 months away?
For me, having SMA Type 2, the answer is unequivocally yes, with no reservations. If I had SMA Type 1 or if I was an extremely weak Type 2, my answer would be no because it would have been too risky to delay at that point. From what I understand about the progression of my disease, and the potential for Spinraza to slow it down, delaying it will certainly make it less effective, but the rewards for me would outweigh the percentage of disease reduction starting Spinraza right now would allow vs. starting it (at most) 6 months from now.
If these treatment options continue, and we continue to see future treatments coming down the pike, it still blows, but comparatively this is a very positive time to be born with SMA Type 2. What I wouldn’t give to have had such choices when I was just a youngin’. I know this is a difficult choice to have to make for your child, but what a wonderful problem to have compared to having no choice whatsoever.