Kip Troendle

My doctor contacted me with the invitation to see her at the University of Iowa, where I then went through minor testing (blood, EKG, urine sample, etc.).  After my test results were reviewed, I was contacted by Accredo Pharmacy.  They thoroughly went through side effects and my instructions from taking risdiplam, to storing the medicine, to r…[Read more]

I was just approved and will be receiving my risdiplam 08/11.  I can maybe leave my progress here?

Hi, Alyssa.  I have tried CBD for painful sciatica which I come down with a few times each month.  I’ve tried an oil form (300 mg) placed under my tongue, and the other in a gummy bear format (1500 mg).  It does work, but for me, only for a shorter time than desired.  It should help you with stress and anxiety.  It did for me.  It made my stoma…[Read more]

Great topic!  I’ve always had a high metabolism, until recent years.  I’m now fighting that middle age spread.  As with you Brianna, might arms have become “fleshy”.  We all know that every ounce of unwanted weight on our arms can be a liability.

Fortunately, I still live under my parent’s roof and mother’s good cooking.  So fairly balanced meal…[Read more]

Gosh, you’ve missed out on the “good ol’ days”.  Gonna reminisce a moment.  A skill called Mastermind allowed me to compose AND read text messages.  This is truly missed.  I could control my cell phone by telling Mastermind to call anyone in my contacts, and it would automatically dial that person on speakerphone.  Yes, we can still call from Alex…[Read more]

Yes, thanks for sharing this.  All help will be appreciated.

It’s probably safe to assume parents are the primary caregivers to people with SMA; even into adulthood.  I’m 50 years of age and my mother is still my primary at 70 years of age.  I have home healthcare come in week mornings to get me up, and private help on weekends and some evenings.  Private help was found by word-of-mouth.  One area I fou…[Read more]