This topic contains 9 replies, has 3 voices, and was last updated by  Art Slott 3 months ago.

  • Author
    Posts
  • #11319
     DeAnn R 
    Keymaster

    Friday, March 16th, 2018, will be my first Spinraza maintenance dose!  Considering a year ago I was recovering from complications from a gallbladder surgery, I didn’t know this day would ever become reality.  Even though I know what to expect I still get a bit anxious as typically medical procedures, no matter how routine, seem to be more difficult with me.  Despite my spinal fusion and general lack of mobility, so far everything has gone smoothly. After all I got through the rigorous maintenance doses.  Once every four months should be a piece of cake…right?   What do you tell yourself, or your child, to psych yourself up for something like this.  Words of encouragement always appreciated…

  • #11320
     Kevin Schaefer 
    Keymaster

    That’s great DeAnn! Hope it goes well for you.

    Yeah I totally understand about the anxiety leading up to the procedure. Heck, I do water therapy every week, and I still get a little nervous when it comes to transfers! Hoyer lifts can be quite annoying, no matter how often I use them.

    I also have my next Spinraza injection coming up in May, and I just tell myself that the hardest part is over. Getting through the back-to-back loading doses was pretty exhausting, and now that that’s done with I can handle one every few months. And you can too!

    Also, I encourage you to reward yourself once it’s over (treat yo self!). Buying something nice for yourself or making plans with a friend can really help with motivation. It helps me.

    Good luck and let me know how it goes!

    • #11336
       Art Slott 
      Participant

      Great advice, Kevin. Celebrate after every visit. Maybe a favorite restaurant in the city where the hospital is or one on the way home. It even motivates me with grocery shopping if I go to Dunkin Donuts first!

      • #11337
         DeAnn R 
        Keymaster

        You should go grocery shopping before Dunkin Donuts. You’d fill your cart with lots of goodies if you go hungry!

  • #11328
     Art Slott 
    Participant

    Think of your favorite person/people at the hospital that you will be seeing again and perhaps some new friends will be made. Maybe a new Facebook friend or two.

    Best wishes.

    • #11331
       Kevin Schaefer 
      Keymaster

      Great advice Art!

    • #11334
       DeAnn R 
      Keymaster

      Very true, everyone is always nice. The warm blanket doesn’t hurt either. Lol.

      • #11335
         Art Slott 
        Participant

        ICYMI DeAnn. From yesterday.

        Also presented at the MDA Clinical Conference was a case series, “Nusinersen Experience in Teenagers and Young Adults With Spinal Muscular Atrophy,” which showcased SPINRAZA’s stabilizing or improving effect on teens and young adults with Type 2 or 3 SMA.

        In the case series, participants (n=5) were 14 to 15 years old at the start of Study CS2, and 17 to 19 years old at the time of their last visit in the extension Study CS12. One participant was Type 2 and four were Type 3, and all received multiple doses of SPINRAZA over 2.5 years of observation. The results included improvement on the Hammersmith Functional Motor Scale–Expanded (HFMSE); stabilization on the Upper Limb Module (ULM); improvement in the Six-Minute Walk Test (6MWT); and stable or improved scores on the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND).

        “The case series demonstrated SPINRAZA’s effectiveness in teens and young adults with SMA Type 2 or 3,” said Dr. John Day, M.D., Ph.D., lead study author, Stanford University Medical Center, California. “The study participants demonstrated stable or slightly improved motor function and quality of life during two years of treatment – and even afterward, we have continued to see improved and maintained stability and motor benefits with SPINRAZA. This differs importantly from untreated teens and young adults with SMA, who experience a decline in motor function, specifically in reduced walking distance and upper limb activities, as well as in health-related quality of life.”

      • #11338
         DeAnn R 
        Keymaster

        I did see that.  Fantastic. Maybe it’ll open doors for other countries to start or expand treatment.

      • #11339
         Art Slott 
        Participant

        Also here in the US.

You must be logged in to reply to this topic.

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

©2018 KLEO Template a premium and multipurpose theme from Seventh Queen

or

Log in with your credentials

or    

Forgot your details?

or

Create Account