Kip Troendle

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]

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 s…[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 rem…[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.