I received my first power wheelchair when I was in 5th grade (1981). Belt driven motors/wheels with tube tires, but I sure loved my new wheels. I’ve seen the advance wheelchair designs and technology subtly change over the years. Good but not great. I think AI really holds the potential to help aid us in our daily routines! A robot to fill a…

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My condolences to those close to DeAnn. I watched many of her videos and enjoyed her upbeat personality. A reminder to all of us to live every day as if it is your last.

Seems like the holidays come and go faster every year. Perhaps it’s my age? My fondest memory was my Grandma staying with me as my parents attended Christmas Eve mass. We’d play cards, wrap gifts, and eat lots of goodies. As she aged and passed, that tradition was no longer. I still think of her and the love she brought, so very often;…

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I fully understand. It’s so difficult being “normally” active when the temperature gets drastically cold. I only can suggest staying warm with space heaters, and if your stomach tolerates, try warm drinks. I like warmed apple cider for one, and hot chocolate or Carnation Instant Breakfast (which has ingredients to help energize you). Happy Hibernating!

I haven’t tried the water pick, but am tempted! I envisioned water squirting all over the bathroom walls, but maybe that’s okay, too! 🙂

Good question — I know we aren’t “hitting” areas especially towards the back, as I have limited opening as well. And I’m OCD with bad breath, and I know mine can be horrid at times. I use mouth wash, but it’s seems only temporary. I have searched online for floss ideas with small openings, but found little.

As my hands grow weaker, I’m no longer able to hold my electric toothbrush. I’ve had my caregivers try helping brush, but I feel as if we’re not doing an adequate job. What do you do? Suggestions? I really would like to find a way to floss as well; if anyone has a trick! 😁

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.

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?

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…

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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…

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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.

I would much appreciate others input here. Over the past 6+months, my neck and swallowing muscles have weakened enough now that my intake isn’t sufficient. I’ve been encouraged to have a feeding tube installed to supplement my still able to somewhat eat meals. I’ve noticed from pictures, other members here with the nasal tube. Is there…

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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… Read more

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???

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.

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! 🙂

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… Read more

Thanks for sharing this!

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.

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… Read more

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.

“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.… Read more

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… Read more

I’ve been researching beds and how I can eliminate the need to be “rolled” by someone during the night.  I’ve slept on a waterbed my entire life without bed soars.  So that in itself has me reluctant to change.  But it would be so nice rolling on my own.

I’ve seen videos about the PRO-BED Freedom bed.  Are there other options?

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… Read more

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!

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’.

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… Read more

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… Read more

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)!

Good luck! Don’t be nervous. 🙂

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!

Congrats to you, DeAnn!  I’ve been in contact with 5 people that have had their first dose, with zero side effects.  Keep us posted on your after effects, if you don’t mind.  Yup, I’ll be getting mine when available.

Our local clinic and hospital, sends homecare to me M-F to help with morning cares and give my mother a break.  So they were aware of my parents being primary caregivers.  If I were you, I’d call whoever gives you the seasonal flu shot, and ask if they perhaps have a list for independent caregivers.  Many nurses and caregivers in my area are… Read more

I debated for several days now about bringing this personal area of my life up for discussion.  I’ve seen a counselor on-and-off for about one year now.  Her specialty is relationships and sexuality.  It took many sessions before I completely let my defenses down, and opened up.  In the end, we finally came to the following conclusion.  I’m… Read more

Yes!  I have experienced exactly what you’ve described.  I can somewhat feel my muscles tense up, wanting to do something.  Thanks for your reply, Kelly!  And thanks for the ginger suggestion!  I forgot how good that is for calming the stomach.  I also use peppermint essential oil which also calms the stomach.

Isn’t it frustrating?!?  Luckily my parents (being essential caregivers) were able to get their first dosage last week.  The clinic said they have no further information on the next roll out.  C’mon people!  Lets get cracking!  Ya know Alyssa, if you’d quickly commit a major crime, they’d vaccinate you in prison right away!  Shameful!  I’m not… Read more

For me, green bananas firm things up, ripe bananas move things along.  It’s a tricky line!  🙂

Oh, DeAnn!  You hit on a topic I’m dealing with, too.  I’ve been on Risdiplam/Evrysdi since 08/13/20.  From my experience, the stomach yucky feelings will subside, but the diarrhea has not.  If anything, my bowels seem to have “awakened” and I’d rather they go back to the way they were.  I’ve tried cutting back on Miralax, but that hasn’t… Read more

I remember quite plainly the very first time I asked a girl out. I was a freshman in high school and anonymously sent the girl of my dreams (well, I thought at the time) a red rose.  I waited the typical 2 days, then called her.  My heart was racing as she answered the phone.  After a very short, nervous few minutes, I asked her to meet me at… Read more

Thanks to the moderators and other contributors for all you’ve brought to the forums.

I miss (in person) movie night with a favorite cousin.  I haven’t considered streaming a movie online together.  I didn’t even know this existed until recently.  It just doesn’t seem as if it would compare, but it beats not being together at all I s’pose.

On a side note, I was watching CNBC yesterday, and they interviewed a person who has… Read more

Iowa starts 01/01/21, and it’s gonna be a real pain.  I decided to bit the bullet and start 10 days ago for the month of December.  Before I begin with the negatives, I give kudos to CareBridge (they are the scheduling company that developed the EVV technology).

I have my mother as my primary CDAC provider, with my local homecare community… Read more

I do not.  My folks and I looked into different trusts a few years back, but were so overwhelmed by the different variety, we dropped the ball.  I wonder if I can designate a recipient to my SNT when I pass?

I recall looking into ABLE a year or two ago.  I was concerned about the money should I pass away.  Here’s what I found…  CON:  If there are funds remaining in an ABLE account upon the death of the account beneficiary, they must be first used to reimburse the government for Medicaid benefits received by the beneficiary, and then the… Read more

Thanks, Kevin.  Appreciate the info.  Do you have a sign-up link?  Looked at the site but not seeing it.

Have you tried taking a Vitamin D pill and breaking it into 2-4 pieces, then swallowing with a spoon or two of applesauce?  I used to get pills stuck, too.  Then I learned that little trick.  I take one 5000 IUs pill every 5 days.  If I take it more often, I get constipation.

Happy Monday, Alyssa!  So is it Columbus Day, or Indigenous Peoples’ Day?  🙂  Don’t get me started on that one!  My favorite holiday weekend has always been Thanksgiving Day weekend.  Four days of eating too much and watching loads of football.  Fun!

Congratulations on your new start-up!  Exciting!  I understand your concerns.  In 1997 I… Read more

I agree!  When I was younger, I had just enough strength to pick up a smaller book, and burry my nostrils into the pages!  Oh that new smell, I loved it so!  Now, I let Alexa read to me.  Problem is, I just can’t seem to find anything interesting.