kip-troendle
Forum Replies Created
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I had fun tying a wagon behind my chair and pulling them around for rides. I would also turn my speed down and allow them to drive my chair slow and safe. I think this educated them as well.
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Someone very close and special to me, highly encouraged me to get help with depression. So a few years back, I asked my family physician about meds and options I might have. I found any medicine I tried, only made me tired and weakened my muscles. Has anyone found a medicine that works for them?
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Throughout my years of dealing with this issue just as everyone here has, I have discovered what works best for me, is more hands on deck helping for shorter amounts of time. For example, I have three night gals that alter helping me to bed. They have other jobs, but are perfectly fine with being hired for a short time. If they had to commit more time, I’m certain they probably wouldn’t do it. It can be a pain for me managing the daily schedules, but it works. I currently have 6 helpers who I can rotate when I need to. If one gets sick or has to be out of town, it’s easier to manage having that much backup. I also live in a very rural area, where everyone knows everyone, and that is different from many areas. Even if you currently have one or two caregivers, consider bringing more on board to be ready for the future.
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I often wonder if everyone else out there having SMA, deals with ‘trying to get comfortable’ on a daily basis? I use the popular Roho cushion in my wheelchair, but we have a love/hate relationship almost every hour of every day. As I read your question, it took me back to suggestion one therapist had for me. I can’t recall the name, but the quads could be filled with what looked like packets of salt or sugar you’d get at a restaurant. She said you could customize the firmness to your liking by simply adding/removing more packets. Gosh, I’m sorry I can’t recall the name.
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I tried the voice amplifier and found it not as helpful as anticipated. Perhaps it was too cheap ($35.99) (https://www.amazon.com/gp/product/B08MXNWRQL/). My father has VERY poor hearing (even with hearing aids) and can barely make out my words/conversations.
I also was red flagged as a Bi-Pap candidate years back. It has been a good dust collector. Instead, I aim a plain old fashioned fan at my face all night. I believe it help push the CO2 from my lungs, somewhat like the Bi-Pap, but without the uncomfortable straps.
I enjoy new equipment or technology if it makes my life easier. However, there’s usually a downside to making things easier. We end up not using muscles we typically used frequently. Example, Alexa can change my TV channels now with a simple voice command, but forcing my fingers to push the remote buttons is no longer is required. Good or bad?
Please let me know if your voice amp works well…
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I’ve got one that I’ll put up against anyone else… my CDAC case manger from years back was waaay over the top with details. She requested I tabulate the time it takes me to eat MINUS the time my care provider just sits there waiting for my next fork of food. Really???
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All arms/hands/fingers. She never over-extends, as that makes muscles weaker. We usually do 10 reps where she completely does movement on the first 5, then I try helping the last 5. When I first started with my OT, I thought it wouldn’t help any, but it truly does.
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Yes, OT has been better than PT for me. Much better (less?) stretch of muscles and less fatigue. I didn’t score any cookies (or kisses) though! 🙂
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Oh, how I miss that area! Twelve years ago, my doctor suggested a warm winter getaway. So I searched the Internet and found Mission, TX. After a lot of planning, just mom and I took off on our big 2 month adventure. I crossed into Mexico once in addition to South Padre.
If I can, please allow me to encourage everyone reading this… travel while you still can! Someday your body will no longer be able. The memories I have of my winter in Texas and two years later in California, will be the highlights of my life. My regret is not doing it more.
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It just so happens, my 2nd gen Echo keeps losing its WiFi connection. So I will hopefully land a good deal on a new 4 gen. All together I have 5 throughout the house. I really like “Alexa, make an announcement” to request assistance.
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Gosh, I can certainly relate! I was thinking about a concert as well this summer. After weighing pros and cons, I decided it wasn’t “worth” the effort needed. I’ll say this first — as one gets older and experiences the pros vs. cons situations, it becomes more difficult to “pull the trigger” and do something; like the concert. I now seem to be able to find numerous reasons to forgo just about anything, which I say to myself is… unhealthy. Life teaches us lessons, which is good, but we must also remember we are where we are today, because we lived through those lessons.
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Wouldn’t it be neat if someone invented a cushion with multiple air chambers which could be adjusted by an app? A tiny air compressor hooked to the chair battery.
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“There must be something in the air!” — Sorry, I couldn’t resist using that line here. I’ve been having difficulty sitting lately as well. I usually blame it on a change of weather or season. Living in Iowa, major humidity swings makes for aches, pains, and changes in cushion comfort. I use a high profile Roho with a low profile cover. The smaller cover “holds” the cushion more firm. I also have one lateral support and 2 hip supports. I adjust the air pressure in my Roho, to find an optimal balance of my neck and upper torso. PT has suggested wedges instead of over-inflating the Roho, but I can’t make it work. I recently came up with an idea. I use the air packaging that comes in some boxes, cutting to a desired size, and wedging where needed. Another helpful item everyone has is cardboard. It can be cut and double folded to a desired size for support. I feel your pain!
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During one of my yearly assessments, I broke down in tears… and I RARELY cry! All the personal questions just hit me that particular day. I seldom think about all the things I’m unable to do. That’s a depressing avenue none of us like to travel. Now, I prepare for assessment day as if it’s a war! Yup, I feel sorry for the individual assigned to my assessment that day. I give a quick, sharp “YES” or “NO” before the question is completely finished. Am I being rude? Yup! If you want to know if I can cut my own food or wipe my bottom, you aren’t getting the rosy answer! Fill your answer and get on with it.
So many times, I wished there was a check box that said… “Check here if everything is the same as last year”! I guess that would be easy!
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I hear EXACTLY what you are saying! I can’t stand being behind schedule (especially with morning routines). I try to get in the habit of always preparing. For example — most evenings when my “night person” comes to put me to bed, I find one or two “things” to be prepared for morning (like putting out my clothes and getting my breakfast table ready). These things being done, helps my “morning person” be able to do unexpected things that might pop-up. I’m always planning ahead and doing things in advance.
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Great suggestions. I had not heard of the smart switch! I always worry if my internet goes down, how will I operate without A-L-E-X-A!
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Ignore me, please! Although, it’s “refreshing” having a stranger say ‘Hey’ in that way (I’m guessing you all know what I mean) as if you’re not the disabled person, but just any-other person they’d ‘Hey’.
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Good for you, Alyssa! I received a deposit right into my Direct Express debit card for the first two stimulus. With this last one, my $1,400 was added into my parents account along with their stimulus. Not sure why. I would recommend cashing the check and spending it.. ummm, {wink, wink} at a casino. Poof, all gone, can’t be traced, and it doesn’t count against your benefits.
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I recall some of what you are experiencing when I started Evrysdi. I no longer have those feelings. I believe each person’s body learns to accept Evrysdi. For me, it was mainly my bowels. Now (8 months later) my body has adjusted nicely and I rarely have problems. I’m one who doesn’t like taking any forms of medication, so I sometime take a small amount of wine or other alcohol drink before bedtime, which helps me fall asleep easier. Good luck and I hope it gets better for you!
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Hi DeAnn. When I encounter a situation as this, I LOVE saying “Hold one moment please, I’ll call the other party right now while I have you on the phone…”. I put my cell phone on speaker and place it by my computer to make a Skype call. I grab some popcorn and wait for the final shot (sorry, couldn’t reset the metaphor)!
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Good luck! Don’t be nervous. 🙂
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Feeling your sadness and loneliness, Alyssa. Like I’ve said my entire adult life… I can handle and deal with the physical challenges of SMA, but the emotional side is a true battle hard to handle. It so difficult having an outgoing personality stuck in a body that can’t keep up.
Hopefully as one door slightly closes on you, another will open!
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Thanks for the reply. The Mic-key looks like a nice “solution”. I was really hoping to not be put completely under as well. I haven’t seen a speech therapist, no.
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Thanks for sharing this!