deann-r
Forum Replies Created
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Basically I live in my wheelchair. The only time I’m out of it is once a day to go to the bathroom and at night to sleep. By morning I’m usually ready to get back into it. Even the handful of times I’ve been in the hospital I stay in my chair as long as possible. When I was younger I was asked if I wanted to sit on the couch or in the recliner. My answer was always no. Although it looks comfortable for me it’s just awkward and frankly a hassle. My chair has a custom molded backrest and tilt, so that’s helped my comfort level quite a bit throughout the day. I’ve also taught my service dog to pull my feet forward. Now if it came with built in massage and heated/cooling seats I would be set!
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Glad to hear it went well despite becoming a pin cushion Mike. As far as the box, I was never offered and I never asked. I know some get the empty vials and make charms or ornaments with them. To each their own, I’m not that sentimental I guess. Keep us posted on how it’s going!
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Where would someone even begin if they wanted to incorporate this into their diet? Are there certain labs one would want to monitor?
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Definitely a pain to deal with. I don’t have a catheter or anything like that. Once a day I have my PCA transfer me with the hoyer to use the commode. Certainly is a process. Luckily I’m a routine person, so only have to beckon someone on the rare occasion for an extra bathroom break. Otherwise I just make it part of my morning, midday and bedtime routine. I’ve been intrigued by the SPC or Mitrofanoff as alternatives, but what I’m doing works for now.
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Curious, what types of benefits have you seen? Diet was never even discussed when I was a kid, so it’s interesting to hear how it can be beneficial. Is it something a person can implement partially or is it an all or nothing type dietary thing? I have a million questions, but I’ll start with those.
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Yay! So happy for you. Keep us posted on your journey. #1 is in the books. Did it go as you expected?
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Good luck! Let us know how it goes. Do you do any prep beforehand? I know some do extra hydration and caffeine loading prior to the dose to prevent the spinal headaches.
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Looking back there are lots of things I used to be able to do but can no longer do. It’s not in my nature to dwell on that. I prefer to focus on things I can do. Have to admit though, since Spinraza came out it’s really brought those losses to the forefront. What if I could do this again? What if I could do that again? Even though I try not to have expectations those thoughts are in the back of my mind. Probably the biggest loss for me was my swallow. You never realize how many food commercials there are until you can’t eat. Will I get my swallow back? I don’t know. I do “cheat” with actual food on occasion. All the extra things I have to consider when I do so does take some of the fun out of it, but I’m not ready to never eat a taco again. Of course it’s a process as it takes me longer because I can barely reach my mouth. I have to chew chew chew to break it down. Plus part of it might still end up on my lap because let’s face it tacos are messy. Then there’s the whole aspiration risk…sigh. Like most things I guess, I’ll do what I can till I can’t. Odly enough I still enjoy watching the Food Network with my mom when I visit. I make sure she’s DVR’d The Great Food Truck Race. Still amazes me what they can whip together in the back of a truck.
When I’ve found I can’t do something anymore I enjoy teaching others how to do what I loved to do, or exposing them to things I wish I could do. For example, I can’t really get out fishing anymore, but I can lend my pole to the neighbor kid and give him a few pointers. When he catches the big one I can feel like I was a part of it.
Is there a way you still enjoy things you can’t do anymore? Have you found a way to adapt so you still can?
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I’ll add it to my summer reading list!
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Thanks for sharing Kevin. I’ve been seeing a lot of questions regarding this way of getting injections. Do you have a port where they do the injections, or is it a direct injection? Do they do the injection in fluoroscopy? I get mine done via the neural foramen approach with CT guidance. Some docs are against this method as well, so it’s nice to let everyone know options to present to their medical teams.
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Before my fifth dose I had another physical therapy assessment and a pulmonary function test that they compared to my baseline. My PT assessment showed a 5 point improvement on the upper limb scale. I still can only tear through one layer of paper and can not open a glad container, but there was minor improvements, so I’ll take it. Not sure how often we do these. Next time I’m tearing through 2 layers…lol.
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Oh gosh, does this bring back memories. Sometimes I wouldn’t mind a Make-A-Wish redo because my parents persuaded me to settle for Valleyfair instead of Hawaii. Oh well. I do encourage parents to pursue this as a great way to make memories.
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Who knew it would be so difficult to find a comfy cushion! When the company I go through for my cushion “updated” it, I absolutely hated it. I have no idea what changes they made, but my butt didn’t appreciate it. After being allowed to try out a few from my durable medical supply company I ended up choosing one from the same manufacturer just a different style. I think it’s a Jay. It’s basically a gel foam, so it’s pretty durable. Probably not as soft as you’re used to though Kevin. Knock on wood, I’ve never had a pressure sore, but don’t want one either, so it’s very important to get a cushion that works for you. Is it difficult to get positioned with the ROHO? That’s why I shied away from trying it.
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My first experience with cough assist was in a hospital setting. Definitely scary at first, but worked like a charm. All the time I have people say they wish they could cough for me when they hear my wimpy attempts. This machine actually does. The respiratory techs were surprised I didn’t have one at home.
Within the last year I got my very own. After fiddling with the settings and trying a mouthpiece I think I’ve got it where it will be most beneficial. I’ve had to educate others on what it is and how to use it, but it’s not hard to do.
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I’m more on the “chunky monkey” spectrum of SMA. I’ve heard a lot of SMAers are on the AA diet. Sounds like it may help with absorption issues, but I really don’t know much about it.
Now with Spinraza I’m curious if it will have any effect on these issues. Of course it wouldn’t be a direct effect. I’ve heard some references to increased cravings of protein, others burning more calories because of increased activity. Some have mentioned gaining weight from increased muscle tone. Who knows, but it is interesting.
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I’m loving this blog by Elizabette. She’s got a great sense of humor.
https://elizabetteunplugged.com/
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Have they considered the neural foramen approach? That’s how mine is being done. No surgery or fasting required. Mine is done with CT guidance. When there’s no access point due to fusion they can go through the natural openings where your nerves branch out into your legs. It’s more of a side approach. For me the procedure to get the injection takes about 20 minutes, just lidocaine to numb me up.
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Very cool David! Brag away. I love hearing all of the ways technology can be customized to suit our needs. Some of us however would need detailed step by step instructions as we’re not as tech savvy as some of you. Here I thought I was doing good when I discovered the on-screen keyboard a few years back.
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Monika, I have also heard that carrying extra weight can hinder movement as well. Finding a good balance and making sure you have the nutrients a person needs is probably key. If you’re happy with where you’re at that counts for a lot.
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Adnan, cough assist is much different than a nebulizer. Cough assist more pushes air in when you take a breath, then quickly pulls air out for the exhale if that makes sense. When you cough with the exhale it gives the cough more oomph. They work great in conjunction with each other for me when I’m sick. I’ll do the nebulizer to loosen gunk, then cough assist to help get it out.
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Interesting looking device David. I do try stretching beforehand, but apparently not enough. I’ll have to figure something out, already dreading next years appointment.
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I’ve been following her a while now, and can relate to her perspective. As I said before great sense of humor about it all as well.
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When both parties have a disability I would imagine you’d have to get creative when it comes to intimacy. I can certainly see what you’re saying about having things in common when you both face similar obstacles in life. It would seem to open a lot of dialog when it comes to getting to know each other.
As far as partner/caregiver, do you think that those two roles automatically intertwine? Being the person with the disability I wouldn’t want to burden a partner with that responsibility, yet if they cared about you I’m guessing they’d want to assist you when they could. I’m sure every situation is unique to that regard.
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Pooja, in the United States most individuals need to get approval through their insurance companies. In some instances if it’s been denied the pharmaceutical company has stepped in. In other countries where the treatment has been approved it’s really based on how their health system works. Some have put many restrictions on who can get treatment. I’m sorry to hear it’s not yet available to you. Keep advocating for it, and as new treatments arise hopefully it will become more readily available. Thanks for asking and best wishes on your journey.