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

Susana Rave

Home Members Susana Rave
show less show more
Profile picture of Susana Rave

@srave

  • Activity
  • Profile
  • Friends 0
  • Forums
  • Articles
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Profile picture of Susana Rave

    Susana Rave replied to the topic Radicava and side effects in the forum Living With ALS 6 months, 2 weeks ago

    I was diagnosed 3 years ago and right away was prescribed Riluzole.  Last Saturday I started Radicava ORS and have tolerated it well so far.  According to the pharmacist who I spoke with prior to taking the Radicava said the side effects could be headaches, fatigue and bruising easily.  I have not experienced any of these so far but I am only on…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 8 months, 4 weeks ago

    Rick thank you for your sharing your exceptional talent with us. May you rest in peace dear friend.

  • Profile picture of Susana Rave

    Susana Rave replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 9 months, 1 week ago

    My biggest adjustment in living with this disease is losing my independence and having to rely on my husband to do the simplest things like making the bed.  I was diagnosed in October 2019 and while I have a slow progressive ALS, I am still walking albeit with a walker at lease I can still move around. I can still take care of myself, i.e. shower…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Did You Have to Change Careers, or Even Retire, After Being Diagnosed with ALS in the forum Living With ALS 10 months, 1 week ago

    I am a financial analyst and have continued working since my diagnosis on October of 2019 at age 60.  However, after 3 years with ALS I am progressively weakening, especially hands, so this year I am considering retirement.  I love my job but I think its time to change careers.

    Susana

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Modifying your Home in the forum Living With ALS 10 months, 3 weeks ago

    Hello all,

    Thank you for your posts on the home remodels.  I have a question to anyone living in the Los Angeles area as to what company you used, specifically for the bathroom remodels.  My husband and I live in a two story home so aside from the bathroom remodel to the bathroom on the first floor we are also looking at installing a chair l…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Dressed with Success: Adaptive Clothing for Living with ALS in the forum Living With ALS 1 year, 4 months ago

    Dagmar, thank you for sharing this information.  I wear the Billy’s shoes and they are comfortable and easy to slip on.  They have zippers on the outside of the shoe which allows the foot to be placed effortlessly inside the shoe bed and once the foot is in you zip the shoes and you’re ready to go.

    They work great with the AFOs!

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Alternative Medicine and ALS in the forum Living With ALS 1 year, 7 months ago

    Mark,
    Looking forward to reading more of your posts and visiting your website when it’s available!!  We would all benefit from the therapy/exercises.

    Susana

  • Profile picture of Susana Rave

    Susana Rave replied to the topic AFOs: Are they worth it? in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 8 months ago

    Hi Marianne,

    I also have bilateral drop foot and the AFOs are a must for me. They provide stability and allow me to walk (heel toe) and without tripping.  My PT recommmended the titanium type which are light and comfortable to wear.  I also use the rollater when walking long distances.   I love them.  Fortunately, my medical insurance cove…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Very very nervous … dont know what to do in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 10 months ago

    Hi Russell, I am sorry you are going through this but all of us on this thread have been there.  I echo what the rest of the participants said; try to relax and don’t create more anxiety with the what ifs.  Allow the doctors to properly diagnose.  The best advise is to calm down and don’t let your thoughts get out of control.  When I was dia…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Asking for Support in the forum Living With ALS 2 years, 2 months ago

    Marianne,

    Thank you for your post.  I took melatonin last night and that helped me sleep through the night.  I spoke with my MD and he recommended ibuprofen for the pain as needed.  I hope for better night sleep in 2021.

    Thanks again and have a good and restful 2021!

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Asking for Support in the forum Living With ALS 2 years, 2 months ago

    Good morning

    I have been diagnosed since September 2019 and my symptoms have been slow progressive.  Until recently I have never had issues sleeping. The last 6 months I toss and turn every 2 -3 hrs  because staying in one position causes lower back pain if I am on my back, or pain to my hips if I ‘m on my side.  All the tossing and turning re…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources in the forum Living With ALS 2 years, 4 months ago

    I thank you sooo much, Dagmar!

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources in the forum Living With ALS 2 years, 4 months ago

    Hi Dagmar,

    Thank you for your sharing.  Yes, please let me know the toe exercises.  I don’t want to go through surgery so anything you can suggest is greatly appreciated!

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources in the forum Living With ALS 2 years, 4 months ago

    At the last clinic visit the physical therapist recommended that I get AFOs to provide support due to weak leg muscles and drop foot on the left foot.  These AFOs are very sleek and very sturdy.  I think they’re made of titanium and they fit well in any of my sports shoes.

    I have another issue that I was wondering if anyone in the ALS community i…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic ALS and driving in the forum Living With ALS 2 years, 5 months ago

    Hi Kathy,

    I was diagnosed earlier this year and I am still driving, one of the few pleasures I can still participate in.  I have not had any notices from the DMV (thank goodness!)  I am also still working so I drive to work 3 days a week.

    Good luck.

    Susana

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Questions for your medical team in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 5 months ago

    My experience was very similar. I waited 4 weeks for the EMG appintment and a few minutes after the neurologist read the EMG findings he said that I have neuromuscular disease.  Not really knowing what this meant I asked do you mean ALS?  Unempathetically, he said yes.  He did not provide any information as to what this really meant and being ov…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic ALS and Traveling; Sharing Your Tips, Questions & Resources in the forum Living With ALS 3 years, 1 month ago

    My family and I are planning a cruise to Alaska in June.  Any travel tips would be greatly appreciated.

    Thank you.

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Are you a pALS who still works? in the forum Living With ALS 3 years, 1 month ago

    Hello,

    I am still working full time as an analyst and I am fortunate I have a 6 mile (round trip) to work.  I am still driving short distances but getting nervous about driving long distances. Getting ready in the morning is becoming increasingly difficult so I am contemplating on requesting a modified work schedule to start work an hour…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Medication, Mindfulness, Movement and Mood – – Why are they important if you have ALS? in the forum Living With ALS 3 years, 4 months ago

    Dagmar, I exercise (squats, walk and ride a stationary bike) and i truly hope this activity will help keep my muscles strong.  However, i am still struggling with keeping a positive attitude, in spite of my very positive and happy disposition.  I suppose the fact that I was recently diagnosed (9/27/19) is the reason for the angry feelings i am d…[Read more]

  • Profile picture of Susana Rave

    Susana Rave replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 4 months ago

    I began having fasciculations in my thighs about a year ago and did not know why.  I mentioned it to my general practice doctor and she paid no attention to what I described to her.  I knew this was new and different for me but because it was intermittent I did not consider this symptom very important.  Fast forward to Sept 2019, I saw the ne…[Read more]

  • Load More
Profile Photo JULIE SUAREZ Profile Photo Nicol

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
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

Recent Replies

  • Which ALS-related science, research, etc. topic is on your radar right now?
  • What’s going right for you this week?
  • What useful tools or gifts have you found to be most helpful for someone who has ALS?
  • Which ALS-related science, research, etc. topic is on your radar right now?
  • First Symptoms

Members

Newest | Active | Popular
  • Profile picture of Brian Stanfield
    Brian Stanfield
    Active 15 minutes ago
  • Profile picture of Ray Chandler
    Ray Chandler
    Active 42 minutes ago
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 1 hour, 21 minutes ago
  • Profile picture of Len Jax
    Len Jax
    Active 14 hours, 29 minutes ago
  • Profile picture of Luke J Kelly
    Luke J Kelly
    Active 15 hours, 49 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

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 © 2017-2023 All rights reserved.

©2023 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