This topic contains 3 replies, has 3 voices, and was last updated by  Kevin Schaefer 5 months, 1 week ago.

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  • #11529
     DeAnn R 
    Keymaster
    • As an adult with SMA I wasn’t quite sure what to expect when I started Spinraza. After all most of the studies were done on infants and children. Trying my best to keep my expectations low, in the back of my mind I kept thinking of things I wished maybe I could do again.  Nothing major, I know walking isn’t on the table. Could I possibly lift my arm onto the armrest again? Would my head not fall back when someone hits the gas too fast?  Questions like this wouldn’t be answered until I had access to Spinraza.  Now that I’m on Spinraza the answer… not yet.  Yet being the key word.  Changes have been subtle, but I have to remember it took 38 years to get where I’m at.  It’ll take time.  I have to admit being patient is difficult, however I feel very fortunate to have the opportunity. The opportunity to stop the progression, the opportunity to improve and the opportunity to share.  Has Spinraza met your expectations?
  • #11612
     DAN DAN 
    Participant

    how many injections did you get till now? did you notice any change with your power or functions until now?

    • #11613
       DeAnn R 
      Keymaster

      So far I’ve had five injections. No major improvements, however I have had subtle gains.  More sensation in my muscles, and my upper limb scale had a 5 point improvement on my last physical therapy assessment. It’s definitely a slow process.  I’ve begun occupational therapy in hopes to see improvement.  Thanks for asking. Let me know if you have more questions!

  • #11616
     Kevin Schaefer 
    Keymaster

    Yeah I also haven’t noticed anything major, but there have been subtle changes. I have a little more energy, and it’s nice knowing that my SMA won’t progress any further.

    I tried not going in with really any expectations, as I know that it effects adults in different ways. It’s more that the people I know have unrealistic expectations and keep asking me what it’s doing. A lot of them don’t understand that it takes time and for some people the most it will do is stop the progression, which is totally fine with me. I’m just glad my treatments have gone smoothly so far.

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