deann-r
Forum Replies Created
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Since I’m on Spinraza, I’m just biding my time until the next wave comes to market. We are certainly living in an interesting time. As a parent how do you decide what to do for your child? On the one hand there’s an effective yet costly treatment available. On the other hand there may be a trial your child may qualify for. Will the new treatment be better? So many unknowns.
As for me when a new treatment does come out there will also be many considerations. Mainly in my opinion method of administration, effectiveness and cost. Of course there’s also the side effects to consider. So far in my case they’ve been minimal. Wait and see I guess. Now that I’m on Spinraza the waiting part for me is a bit more bearable. Was considerations do you have with upcoming treatments?
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Are you through your first few maintenance doses Mike? Have they gotten the method down to reduce the pin cushion effect? Hope all is well. Would love to hear how it’s going.
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After 38 years I still have not mastered this one. Luckily it’s only maybe once a year I have to get up during the night to use the bathroom. Still I feel bad because it’s such a process. In my case though I have paid caregivers, so it’s a little easier to justify. My trouble lies during the day. Sometimes my feeding tube formula doesn’t sit well and I’m scrambling to find someone to come an hour or so after they’ve left. Imagine having to go, like probably 10 minutes ago because you were hoping your tummy would settle, but nope. You have to decide which PCA would be able to come. By the time you get ahold of someone, they get there, you do the whole transfer process and get to the toilet you’re looking at probably at least an hour. That hour can seem like an eternity. Not fun. The whole process half asleep I’m sure is miserable as well.
Have you tried a probiotic? It was suggested to me to get on a more routine schedule, but didn’t really seem to help me out. Like you, sometimes even if I went earlier I’ll still have to go later. I know some folks have gotten a colostomy, but seems drastic to me. I would try to pay attention to what types of food you’re eating. When I could eat, I tried to avoid greasy or fried foods and heavy foods and I didn’t eat after 8 at night. The not eating after 8 contradicts what SMA “guidlines” suggest though. Another thought is have you been on antibiotics? They can mess me up something terrible. If that’s the case probiotics may help. Hope you find a solution!
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I was resistant to using a Hoyer at first, but in the long run it is much better for the health of your caregivers. I have a separate mesh sling for showers that we swap out after the shower. My slings have a commode opening, so toileting isn’t an issue. I leave my sling under me and just tuck it in, but you can remove them. Some styles easier than others.
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Great that it worked for you Ryan. When I was striking out on my own this idea of a roommate was pressed upon me by the county. Really they didn’t want me alone overnight, but didn’t want to cover the hours. I didn’t feel if I had a roommate I should be their responsibility. Eventually we got it worked out so I have a PCA overnight. I’ve heard in many instances it works out having a roommate. Some have even worked it out where there’s an exchange of room and board for cares. I’d love hearing stories of what arrangements are made by everyone!
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A good balance of face to face and social media is definitely key. Simply put it’s easier to connect online. As Ryan pointed out not all of the acquaintances will become lifelong friends, but one or two might. Social media is a great learning tool as well. In the last few years I’ve learned more about SMA than I have my entire life because of it. I credit social media for learning and acquiring Spinraza. You do have to take information, and even friendships with a grain of salt though. As I’ve heard Kevin Schaefer say, you have to do what works for you.
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Where I live the public transportation is a bus. I would take it to and from work when I worked outside the home. I had to schedule a day in advance. As you said it’s a bit bumpy, and difficult to anticipate driving styles like how fast they accelerate, but I got used to it. I would purchase a pass that was good for so many rides. They also have a route so if you didn’t call in advance you could still catch the route. Oh, and if you schedule the bus it’s common that they’re late, but for goodness sake you better be on time because they don’t wait.
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That’s great Michael! It sure will be interesting to follow. Thanks for keeping us up to date and giving us your point of view.
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For me support was key. Although one of my parents were hesitant I could make a go of it, in the end both parents supported my decision to try it and I’m grateful for their support. It would have been much more difficult had the one parent tried to hold me back.
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When I first got a hospital bed I never even used the functions. After I was sick one time the doctor suggested I sleep on an incline. I still question the medical advice, but I do sleep on an incline, so it’s come in handy.
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Glad to hear you’re keeping moving! What types of exercises do you do?
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Much like Ryan, the heat doesn’t bother me, although sometimes my skin would disagree. I use remedy powder in some areas that are prone to heat rashes from sweaty skin. Since I don’t like wearing shorts, I can get a little sweaty although I prefer being warm than cold.
My problem lies in the house temperature. Whereas I could care less about the A.C., I turn it on so my PCA’s are comfortable. So then I’m back to being chilly.
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Unless I’m sick I usually do the cough assist once a day (almost every day). As you said everything gets to be so time consuming. Curious what pressure settings you use? Do you keep them the same regardless if you’re healthy or congested?
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Good idea for us ladies (or gents) who have ear piercings as well!
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It’s sad when you have to be concerned if a job will mess with your benefits. Most people are thrilled with a raise or holiday bonus. I was always like, great will that put me over the limit? There’s no way I could pay for services I receive out of pocket even if I could work full time. For me a job keeps me busy, but is also a way to feel like I contribute to society at least a little bit. I actually do some volunteer work just to avoid the hassle of what the little bump in income would do.
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So far the new PCA is working out well. Not only is she prompt for her shifts, she likes to keep busy so we get a lot done. The main downfall is that she can only work until October. Might need to start looking now as it seems to take some time to find good ones. How do you all go about finding caregivers?
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Clever! Wish I’d have thought of that one. Would’ve saved countless pens I lost to the halls of SMSU.
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Kevin, I’d love to see how that lift works. I was going to look into something like that since they discontinued the sling I like and with my old Hoyer it doesn’t clear the bed with the new slings.
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The only time I ever flew my dad had to lift me into a seat and we took my manual wheelchair. I’m like Kevin, waiting for the time you can stay in your chair. Pigs might fly before that happens I’m afraid. If you do fly I’ve heard advice to take pictures of your chair beforehand, and take things like your cushion and headrest in your luggage or carry on so they don’t fall off in transit. In the US I’ve heard Southwest Airlines has been decent.
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Adnan, I agree, it’s nice to know people who can relate. Everyone is unique yet we share a lot in common. Stuff that other people will never quite understand unless they’ve been in our situation. Since the world is such a big place, social media certainly helps make those connections.
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I would wear hats if they were easier to get on and keep on.
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Service Dogs certainly aren’t for everyone. It does take a lot of work to keep up on their training. Each program has its own training methods too, so it’s important to find what works for you.
As far as the attention I’ve found it takes the focus away from me onto the dog which is fine by me. It’s kind of funny, people say hi to Roy before they even acknowledge I’m there.
Do you have to recertify Pandy ever? Every few years I do just so the organization knows I’m keeping up with everything.
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For whatever reason I can’t easily nap in my chair. Even though my chair tilts back I’m always afraid if I fall asleep my arm will slip and I’d be stuck.
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Kevin, my mom has an accessible van so if I need to go somewhere on a weekend or evening she takes me. Otherwise I can use the public transportation as long as I schedule it a day in advance. Kind of stinks that you have to be watching the clock so you don’t miss your ride and can’t do spur of the moment stuff. I do live in town, so in the summer I can trek places on my own.