SMA News Today Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search

Robin C

Home Members Robin C
show less show more
Profile picture of Robin C

@robin760

  • Activity
  • Profile
  • Friends 1
  • Groups 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Enmeshment with Parents in the forum Adults ​With​ ​SMA 2 weeks, 5 days ago

    That might be one of the most interesting and “real” questions that has ever been posed here. Honestly, I don’t have a great answer for you, but I do have a lot of experience with the circumstances. You’re welcome to private message me if you’d like to talk more.

     

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Do you take nebulizer treatments daily? in the forum Adults ​With​ ​SMA 1 month, 4 weeks ago

    I do one every morning, before getting in my chair. Always have, since I was little.

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Traveling with Formula/NJ Tubes in the forum SMA Assistive Technology/Equipment 2 months, 2 weeks ago

    Insulated lunch boxes 🙂

    Are you using a pump? If so, I have seen lots of cute modified lunch boxes. You can get them on Etsy. They will keep your food cold AND keep the pump looking good in public.

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Covid has entered the building in the forum Coronavirus (COVID-19) and SMA 2 months, 3 weeks ago

    Absolutely. I either do, or would do, at least half of those things to treat most viruses or bacterial infections… Or take prophylactically.

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Covid has entered the building in the forum Coronavirus (COVID-19) and SMA 2 months, 3 weeks ago

    As soon as symptoms start:

    NAC 500mg 2-3x/day

    Biotin 8mg 2x/day while infected

    NanoSilver 1 tsp per day

    L-Lysine 500 MG 2x/day. Helps to prevent shingles and herpes sores while fighting virus

    Aspirin 81mg-325mg/day (or Nattokinase 2-4 tablets 2-3x/day)

    Chestal

    For Nebulizer: (I need to find the recipe)
    Saline
    Food-Grade…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Covid has entered the building in the forum Coronavirus (COVID-19) and SMA 2 months, 3 weeks ago

    <div dir=”ltr” data-setdir=”false”><b><span style=”font-size: x-large;”>Pre or Post Exposure:</span></b></div>
    <div dir=”ltr” data-setdir=”false”>
    <div>
    <div></div>
    <div>
    <div class=”ydpaff771f7yiv1711518656ydp529c88a6yiv8576674558ydp5f680298yahoo-style-wrap”>
    <div id=”ydpaff771f7yiv1711518656ydp529c88a6yiv8576674558ydp5f680298yiv0194908982″>
    <div…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Covid has entered the building in the forum Coronavirus (COVID-19) and SMA 2 months, 3 weeks ago

    Honestly…. You might end up regretting asking for this list, as it’s super long. I have at least half of the things in my cabinet, and I do a handful of them every day. The list makes me look paranoid, which I’m not at all. I just feel better being prepared before what could be a time of stress. And I slowly built this list over several months.…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Would You Rather – Doctor Edition in the forum Would You Rather? 5 months, 1 week ago

    I like someone who has experience, but is also willing to do things differently than they are used to. For a GP, I can definitely handle teaching them what they need to know about SMA, but I prefer to have a pulmonologist with SMA experience. Either way, though, I tend to go a bit out of the box, so I guess personality is the most important thing…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Spinal Braces in the forum Adults ​With​ ​SMA 6 months ago

    Sounds like I’m in the same boat as Ajay and Alyssa. I’m wearing the brace I got when I was 14, and I’m now 30. We tried to make a new one about 10 years ago, and over the course of a couple of years and many long appointments, we ended up scrapping at least two full braces.
    Over the years, as my breathing muscles have gotten weaker and my posture…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Switch Access / Switch Control in the forum SMA Assistive Technology/Equipment 6 months ago

    Hey Anna! I use my phone exclusively with switch control and would be happy to answer any questions you have. I have some experience with switches on iOS, but my phone is an Android, so that’s the one I know best.

    I will try to check back on this thread, as I can’t figure out how to get notifications from follow-up replies to actually work… But…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Olympics Lacking Representation in the forum Disability in Media 6 months ago

    Time to start learning about some of the great Paralympic athletes who will be competing, so you’ll know who you want to cheer for.

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Managing Medical Supplies in the forum Adults ​With​ ​SMA 6 months, 2 weeks ago

    I like to have several months’ worth at all times, so that when they mess up (which they all do), I don’t have to worry.
    That often means saving the things I use slightly less than I receive (but still ordering by the “correct” date) or swapping supplies with other people. There are lots of groups devoted to such transfers online, and some are…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Budgeting for PCAs in the forum Adults ​With​ ​SMA 8 months, 3 weeks ago

    My budget is currently for 67 hours, with some room for more if I drop weekly PT visits at home. (Technically, I did drop that last March, because I didn’t want her going into multiple homes every day and then coming to my home… But I didn’t request more hours because I don’t need them right now).

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Home Automation Ideas in the forum Adults ​With​ ​SMA 8 months, 3 weeks ago

    Some of these are really cool! Thanks!

     

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Possessed Wheelchair in the forum SMA Assistive Technology/Equipment 8 months, 3 weeks ago

    That sounds terrible! I’m sorry you are not being helped! I find it odd that they would need the chair for more than a few hours… I’ve never had to leave it overnight. They either send out a tech and fix it at my home, or I bring the chair to them and I spend a few hours waiting. Sometimes it’s just a few minutes. I’m really surprised that they…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Budgeting for PCAs in the forum Adults ​With​ ​SMA 8 months, 3 weeks ago

    I also have PCAs though Medicaid. In Connecticut it’s called the PCA Waiver Program, and the rate has gotten better in the past couple of years. I think it’s around $15.75/hr now.
    You may want to think about starting the process now, since the waiting list is often a few years. Also… While it’s probably better to start getting used to hiring,…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Qualifying Disability-Related Expenses for ABLE Accounts in the forum Adults ​With​ ​SMA 8 months, 4 weeks ago

    Essentially anything can be justified, since they allow for anything that betters your life. Tires on your van is a complete non-issue, since you need the van to get to doctors’ appointments. But you really can do almost anything if you can say how it improves your life. Example: going on vacation.

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Possessed Wheelchair in the forum SMA Assistive Technology/Equipment 9 months ago

    What kind of switch was it? Yes, you should let them know that you need a new one… But don’t get rid of the old one. Depending on what is wrong with it, it’s probably fixable. Then it can be kept as a backup. You know I’m a bit switch-obsessed… So I have several backups of a few types. And I made a few this week (trying out some new designs).

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Hand Warmers You Love? in the forum Adults ​With​ ​SMA 9 months, 1 week ago

    I’m obsessed with the one I got for my wheelchair and I don’t understand why the wheelchair reps don’t let all of us know that they exist!!! I didn’t have one until 2 years ago, and I seriously can’t live without it now. It lets me drive without my hand getting cold (and then not able to move) in the winter, and I have gotten to the point where it…[Read more]

  • Profile picture of Yvette Haas

    Yvette Haas replied to the topic Treating pressure sores in the forum Adults ​With​ ​SMA 9 months, 2 weeks ago

    I also love coloidal silver for all open wounds, but I have never used the type shown above. It looks like it would be super convenient for a pressure sore, because it’s already in gel form, but if you have an option, get one in a higher silver count. That one is 24ppm, whereas the spray I got at the health food store is 250ppm. Not saying 24ppm…[Read more]

  • Load More
Profile Photo Shinji78

Login

Register

Search forums

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages
Search in posts
Search in pages
Search in posts
Search in pages

Who’s Online

There are no users currently online

Newest Topics

  • Day 9 of #31DaysofSMA: Learning About the Wonders of the World by Jessie Madrigal Fletcher
  • Day 8 of #31DaysofSMA: On Being a Wife, Mom, and Caregiver for My Spouse by Kevin Schaefer
  • Day 7 of #31DaysofSMA: I Chose to Follow My Dream to Be Like Walt Disney by Jessie Madrigal Fletcher
  • Day 6 of #31DaysofSMA: People With SMA Can Follow Their Dreams by Jessie Madrigal Fletcher
  • Day 5 of #31DaysofSMA: On Breaking Barriers and Keeping Hope Alive by Jessie Madrigal Fletcher


Members

Newest | Active | Popular
  • Profile picture of Lupa F
    Lupa F
    Active 7 hours, 32 minutes ago
  • Profile picture of Alyssa Silva
    Alyssa Silva
    Active 8 hours, 54 minutes ago
  • Profile picture of DeAnn R
    DeAnn R
    Active 19 hours, 51 minutes ago
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 21 hours, 24 minutes ago
  • Profile picture of Blake Watson
    Blake Watson
    Active 1 day, 19 hours ago

Forums

  • 31 Days of SMA 2022
  • Coronavirus (COVID-19) and SMA
  • Adults ​With​ ​SMA
  • SMA Forums Welcome Lounge
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • 31 Days of SMA
  • Flash Briefings and Podcasts
  • SMA​ ​Parents​ ​and​ ​Caregivers​
  • SMA Treatments: Questions, Stories, etc.
  • Roche and Genentech- Evrysdi (risdiplam)
  • Weekly Wins
  • Spinraza
  • Would You Rather?
  • Zolgensma (AVXS-101) News and Information
  • Raising Awareness of SMA
  • The SMA News Today YouTube Channel
  • SMA Assistive Technology/Equipment
  • Disability in Media
  • SMA​ ​and​ ​Dating/Relationships
  • Polls & Quizzes
  • Going​ ​To​ ​College​ ​When​ ​You​ ​Have​ ​SMA
  • SMA Therapy News
  • Most popular topics
  • Topics with no replies

Recent Replies

  • Day 9 of #31DaysofSMA: Learning About the Wonders of the World
  • Day 9 of #31DaysofSMA: Learning About the Wonders of the World
  • How do you define success?
  • Day 8 of #31DaysofSMA: On Being a Wife, Mom, and Caregiver for My Spouse
  • Day 7 of #31DaysofSMA: I Chose to Follow My Dream to Be Like Walt Disney

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy

Disclaimer

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

BioNews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • Email Forum Support
  • Publishing Team
  • Leadership
  • Our Culture
  • Corrections Policy
  • Careers
  • Contact Us
  • Terms of Service
  • Privacy Policy
  • Disable Notifications
  • Advertising Policy
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2017-2022 All rights reserved.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

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

Sending

Log in with your credentials

or     Create an account

Lost your password?
Verify you are not a robot

Forgot your details?

I remember my details

Create Account

Verify you are not a robot