ALS News Today Forums logo
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
  • Search
  • What can we help you find today?

MaryConnolly

Home Members MaryConnolly
show less show more
Profile picture of MaryConnolly

@marycconnolly

  • Activity
  • Profile
  • Friends 4
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 1 month, 1 week ago

    Please carefully read this very long press release about Radicava ORS. There are links to resources including the JourneyMate program which may help you understand and provide information and support for obtaining Radicava ORS.  https://www.mt-pharma-america.com/2022/05/12/mitsubishi-tanabe-pharma-america-announces-fda-approval-for-the-treatment-of-als/

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 1 month, 1 week ago

    We’re excited to have a non-infusion option! My husband has been on Radicava for ~2.5 years and I was trained to administer the drug by infusion when he started treatment early in 2020. A nurse comes to the house to activate the port at the beginning of a cycle and then mid-cycle to change the needle. I’ve been trained to deactivate the port and…[Read more]

  • Profile picture of Susan

    Susan and Profile picture of MaryConnollyMaryConnolly are now friends 2 months ago

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Riluzole and Radicava in the forum Living With ALS 2 months ago

    This is such a hard question to answer. All I can offer is “there is no control _____” fill in the blank of the name of your loved one. Were there a scientific control for my pALS I would have a more definite answer. So yeah, I don’t know if any of the meds (FDA or experimental) are working. And I can’t tell you the impact of faith, positive…[Read more]

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic CLENBUTEROL in the forum Research Topics 3 months, 2 weeks ago

    Dagmar-do you have a link to your ‘rehab’ program? I’ve subscribed to your blog and thought I saw something there, but alas I can’t find it. Thanks-Mary

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 4 months, 2 weeks ago

    Awesome Lisa! Just awesome. Thanks for representing us!

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Clinical trials in the forum Using our Forums 6 months, 1 week ago

    Have you looked into the Healey ALS Platform trial at Massachusetts General Hospital(Harvard). Here’s the link: https://www.massgeneral.org/neurology/als/research/platform-trial  I don’t know where you live, but their clinical trials which are testing multiple drugs at the same time, are recruiting and trials are going on now at 53 sites across…[Read more]

  • Profile picture of Kathryn F. Kennedy

    Kathryn F. Kennedy and Profile picture of MaryConnollyMaryConnolly are now friends 8 months, 3 weeks ago

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Personal care – toilet transfer in the forum Using our Forums 9 months, 1 week ago

    Thank you Jim! In some of the webinars caregivers have described ceiling tracks and I didn’t have a brand or knew what they were called–now I do. We were preparing to remodel our home and now, post ALS diagnosis, there are numerous modifications to consider e.g. blocking inside the walls for grab bars and folding shower seats, additional support…[Read more]

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Personal care – toilet transfer in the forum Using our Forums 9 months, 1 week ago

    Dave-We acquired a LiftSeat from a friend whose husband had ALS. Here is a link to the item: https://liftseat.shop/products/liftseat-independence-ii-toilet-lift  This lift runs about $1400.  My husband can still stand up from seated position, but getting off the toilet is a challenge from time to time. The LiftSeat can be outfitted with a bidet, a…[Read more]

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Alternative Medicine and ALS in the forum Living With ALS 10 months, 2 weeks ago

    Dagmar—is the Original Strength program you follow the work of Anderson and Neupert? I’ve seen a book and videos out there on the internet.

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Urgently referred to ALS clinic. Anyone here have respiratory and bulbar onset? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 11 months, 4 weeks ago

    Question for Anne: What Classical Stretch program do you use? My husband’s onset was upper limbs and he’s been having some lower limb issues for a while. I’m curious to find out if what you are doing would be a beneficial add-on to my husband’s self-care routine. Thank you for sharing your story.

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Oh my COVID vaccine in the forum Coronavirus (COVID-19) and ALS 1 year, 2 months ago

    We had vax #2 on Friday. Sore arms and feeling a little tired and relieved. Get your vax-it’s better than being dead.

  • Profile picture of MaryConnolly

    MaryConnolly changed their profile picture 1 year, 2 months ago

  • Profile picture of MaryConnolly

    MaryConnolly changed their profile picture 1 year, 2 months ago

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Oh my COVID vaccine in the forum Coronavirus (COVID-19) and ALS 1 year, 3 months ago

    And to you Kathy Stitz and Dagmar and all of you – dealing with ALS and its challenges are no small task for pALS or their caregivers. Blessings.

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Oh my COVID vaccine in the forum Coronavirus (COVID-19) and ALS 1 year, 3 months ago

    Both my husband (a pALS) and I (caregiver) get #2 Pfizer April 9. We’ve alerted our neighbors in case we need anything, but have basic provisions ready. At the worst it’s 24-48 hours of discomfort and we can skip a shower or two. Getting vaxxed means no interruption  in our participation in the Healey Platform clinical trial and Radicava infu…[Read more]

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Vaccine on the horizon in the forum Coronavirus (COVID-19) and ALS 1 year, 6 months ago

    Absolutely the right decision for me, my pALS husband and our daughter who we’ve only seen twice(she lives out of state) since his diagnosis in Jan. We’re also encouraging our extended family and friends to get vaccinated as they are important hands-on support for both of us. ALS can be isolating enough and then COVID made it that much more so.…[Read more]

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Some ALS Research; Truth or Hype? in the forum Research Topics 1 year, 7 months ago

    I found the article regarding OTC pain relievers to be terribly misleading. And the worst part was that the last paragraph was very telling and revealed the truth—if the reader got to the last paragraph. Maybe authors should have started with the last paragraph first.  I’m really disappointed in ALS News editorial staff for allowing that arti…[Read more]

  • Profile picture of MaryConnolly

    MaryConnolly replied to the topic Information or results on Radicava (Edaravone) in the forum Research Topics 1 year, 8 months ago

    My husband diagnosed Jan 2020 at age 61, on Riluzole and started Radicava Mar 2020. His onset was upper limb. It’s hard to know if progression has slowed because there is no “control” for my husband. I administer infusions at home and deaccess port. Nurse comes 2x in the 10 day cycle to access port.

    On a related topic we know that ALS manifests…[Read more]

  • Load More
Profile Photo Gail Garfield Profile Photo Romolo Pallini

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

Who’s Online

There are no users currently online

Recent Replies

  • Have you had physical therapy sessions for your ALS?
  • Have you had physical therapy sessions for your ALS?
  • Have you had physical therapy sessions for your ALS?
  • Would you seek out Albrioza treatment?
  • Have you had physical therapy sessions for your ALS?

Members

Newest | Active | Popular
  • Profile picture of Len Jax
    Len Jax
    Active 2 hours, 45 minutes ago
  • Profile picture of Ray Chandler
    Ray Chandler
    Active 3 hours, 9 minutes ago
  • Profile picture of JohnW
    JohnW
    Active 9 hours, 20 minutes ago
  • Profile picture of Iancu Alina
    Iancu Alina
    Active 9 hours, 29 minutes ago
  • Profile picture of Rebecca D.
    Rebecca D.
    Active 9 hours, 42 minutes ago

Forums

  • Coronavirus (COVID-19) and ALS
  • In Loving Memory
  • Living With ALS
  • ALS Awareness Month
  • Flash Briefings
  • A​ ​Forum​ ​for​ ​ALS ​Caregivers​
  • Diagnosis​ ​Information​ ​and​ ​General​ ​Questions
  • Mobility Aides, Assistive Technology and Medical Equipment
  • ALS ​and​ ​Relationships
  • Research Topics
  • ALS Awareness and Advocacy
  • ALS News
  • ALS In The Media
  • Using our Forums
  • Most popular topics
  • Topics with no replies

ALS News Today Forums

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

Recent Posts

  • FDA Panel Reconvenes in September to Discuss AMX0035 Approval
  • My ALS Week: Voice Therapy, New Exercise Ideas, and the Loss of a Colleague
  • Radicava’s Real-world Safety Profile Matches Clinical Trial Data: Study

ALS News Today Forums 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?

Forgot your details?

I remember my details

Create Account