Kip Troendle

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 assi…[Read more]

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 ta…[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 d…[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 take…[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 el…[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 look…[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 sa…[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 help…[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 ou…[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 de…[Read more]