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Rachel Markley

Home Members Rachel Markley
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@rachelm

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  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic SMA Patients of Color? in the forum Raising Awareness of SMA 2 years, 2 months ago

    Following! None I know are active.

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Problems Breathing With a Face Mask in the forum Coronavirus (COVID-19) and SMA 2 years, 2 months ago

    I also feel the same and it’s stressing me out because I work in a hospital and need to go back in soon! I have no solutions though 🙁

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Interesting Question in the forum Adults ​With​ ​SMA 2 years, 3 months ago

    Doing things alone – i.e. shower, bathroom, eating, etc.

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Do you experience the Spinraza slump? in the forum Spinraza 2 years, 5 months ago

    Mine is Wednesday and only my second maintenance dose but I seem to slump around week 12 as well and by this last week I can hardly function 🙁

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic It's official! Catheter Placement in the forum Adults ​With​ ​SMA 2 years, 5 months ago

    Yay!!!!! You will need to purchase your own supplies and try to determine what kind of setup you’ll use on your chair (if you’re using a bag). I’ll send you my supply list!

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Urology appointment coming up in the forum Adults ​With​ ​SMA 2 years, 5 months ago

    I got my SPC in October but started the process in May. I was advised by 2 urologists not to do it because “my bladder was in “perfect working order”. I ended up going back to my first urologist and had a piece of paper full of a list of reasons why it was beneficial to my health and well-being and after that she didn’t really argue and ended up…[Read more]

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    Rachel Markley replied to the topic Twilight anesthesia? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 6 months ago

    Gas is a totally different drug and your body will respond very differently. I don’t do well with gas either!

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Twilight anesthesia? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 6 months ago

    So easy! I think I’ve had it twice but the one I was old enough to remember (SPC in October) felt just like a regular surgery but I didn’t go to sleep scared to death of complications. I don’t remember a thing from the second they gave me drugs in pre-op to when I woke up. It was certainly easier to wake up from and I had zero complications. Also,…[Read more]

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    Rachel Markley replied to the topic Let's Talk SPCs and Other Options to Pee in the forum Adults ​With​ ​SMA 2 years, 6 months ago

    I’ve had it 3 months. I used to have a G-tube that I hated as well and my SPC is waaaaay less annoying! The surgery was seriously so easy as I only did twilight. It’s worth everything because of how much better I feel.

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Let's Talk SPCs and Other Options to Pee in the forum Adults ​With​ ​SMA 2 years, 6 months ago

    Hi DeAnn! I LOVE my SPC! I’m happy to discuss but it’s way too much for a post. If you have specific questions or want to meet, I’m happy to!

  • Profile picture of Rachel Markley

    Rachel Markley started the topic JACO Appeal in the forum SMA Assistive Technology/Equipment 2 years, 6 months ago

    I’m in the appeal process for my JACO and have been asked to write my own appeal letter. Does anyone have one I can look over?

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Having a High Quality of Life While Living With SMA in the forum Adults ​With​ ​SMA 2 years, 9 months ago

    I personally have never missed anything because of cold and flu season. Most people know to miss out if they’re sick and I’m in attendance and I have always felt I have to trust them. To me, being out and about is more important and I’m willing to take the risk. I mean, I work at a hospital, I know all about risks 🙂

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    Rachel Markley replied to the topic Risdiplam in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 9 months ago

    Kevin, I can move my left big toe! And my left arm contracture went from -40 to -20. Dose #5 is on the 13th!

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Risdiplam in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 9 months ago

    I don’t have a ton of questions – mostly cost, insurance approval, and drug interactions. And taste lol! Anything that avoids the words spine and needle in the same sentence and I’m down.

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Motivation Monday: Prepping for the Winter With SMA in the forum Adults ​With​ ​SMA 2 years, 9 months ago

    My winter doesn’t really change except on the weekends. I still have to work everyday but I the weekends I hibernate and mostly read or play computer games.

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Binge-Watching Made Me Think About SMA & Infant Screening in the forum Disability in Media 2 years, 9 months ago

    First off, I LOOOVE that show and think it’s highly underrated! Secondly, there are several children in my extended family that lived until age 1-2. Based on what family remembered, they more than likely had SMA but it would be cool to know for sure.

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Motivation Monday: Employment in the forum Adults ​With​ ​SMA 2 years, 9 months ago

    Work is a huge part of my daily motivation. It is hard to overcome the fatigue and the general challenges associated with navigating SMA and work (EX: a 2.5 hour wheelchair clinic this morning), but 98% of the time it’s worth it!

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Spinal Headaches in the forum Spinraza 2 years, 10 months ago

    I had the start of one with my last dose. I drank a medium Mt Dew freeze from Taco Bell (recommendation from Biogen FAM) and it went away!

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Columnist Writes About How Physical Barriers Can Unfold in the Most Mundane of Situations in the forum Adults ​With​ ​SMA 2 years, 11 months ago

    Literally me staring at my dinner last night while my parents heated their dinner, fed the dog, heated up the oven…

  • Profile picture of Rachel Markley

    Rachel Markley replied to the topic Dynamic Arm Support in the forum SMA Assistive Technology/Equipment 2 years, 12 months ago

    DeAnn, that’s why my OT and I decided not to demo. She was afraid if I demoed and it even remotely worked, insurance would go for it versus Jaco and Jaco would allow me to do way more.

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