Managing MS
Straight Talk from a Thirty-One-Year Survivor
by Debbie Petrina
www.DebbieMS.com
Links & Resources 


Articles/Useful Links

MS Views and News / Stu's Views & MS News 
Provides education, information & resources for those affected by Multiple Sclerosis 
www.msviewsandnews.org

 

Active MSers
Is designed to help, motivate, & inspire those with multiple sclerosis to stay as active as possible - physically, intellectually and socially - regardless of physical limitations. 
http://activemsers.com/home.html

 

Multiple Sclerosis.net
Subscribe to Multiple Sclerosis.net. Register to stay informed on all the latest MS News, participate in forums... 
http://multiplesclerosis.net/

 

 

Other MS Bloggers:

 

*****

My MS Manager, the first-of-its kind mobile phone app
   created by the Multiple Sclerosis Association of America (MSAA) to
   help patients with MS better manage their disease

MS & Exercising:
   *Program Charts/How-To's
      *Coordination/Balance Exercises (Click here)
      *Stretching Exercises (Click here)
      *Lower Extremity Exercises (Click here)
      *Home Exercise Program (Click here)

    *Articles, Links, Tips, Resources...
      http://debbiepetrina.authorsxpress.com/category/exercise/

    *Tips to Manage Your Muscles
      
http://www.webmd.com/multiple-sclerosis/live-thrive-16/feel-best/muscles

    *Spasticity--What it is & what to do
      https://multiplesclerosis.net/symptoms/stiffness-involuntary-muscle-spasms/ 

MS Fitness Challenge--Encouraging People To Overcome Multiple Sclerosis
      Through Fitness and Nutrition
       http://msfitnesschallenge.com/

*"Are you Financially Protected in the Event of Disability?"
InforMS, Rocky Mountain MS Center
  http://bit.ly/1p9nkXa

*“The Medication Map” (NMSS Momentum Magazine--Winter 2013/2014)
Article discusses the FDA approved Disease ModifyingTreatments
  http://www.momentummagazineonline.com/medication-map-choose-disease-modifying-treatment-ms/

*MS Research Update 2016 (includes a chart of all current treatments)
  http://mymsaa.org/publications/msresearch-update-2016/ …

 *What You Need To Know About Lemtrada for Multiple Sclerosis (newer drug)
    https://www.youtube.com/watch?v=Xx-Hi6zmVXg&feature=em-subs_digest

*Cures Act May Speed Approval of Stem Cell Therapies for MS, Other Diseases
  
http://sumo.ly/tpp8 

*www.patientsforstemcells.org

*"How Disability is Measured"
http://www.webmd.com/multiple-sclerosis/your-best-life-11/disability-measure

*Expanded Disability Status Scale (EDSS)
http://bit.ly/1pmf0Ge

*“Is My Memory Normal?” (AARP The Magazine June/July 2013 pg. 45)
Very informative, extensive article about memory & the brain.
http://pubs.aarp.org/aarptm/20130607_PR?folio=44#article_id=296696

*"Multiple Sclerosis by the Numbers: Facts, Statistics, and You"
http://bit.ly/SbztzP

*How Do I Find A Doctor? Help Is Here! (excellent article!)
https://multiplesclerosis.net/living-with-ms/find-doctor-help/?utm_source=weekly&utm_medium=email&utm_campaign=160314&uuid=2eb9557d12477a97ad5977ad9fd2db5b …

*Newly Diagnosed? Contact TurnFirst.org
TurnFirst is a unique partnership of top MS specialists and patients that provides a resource for learning about and living with MS. The site gives newly diagnosed patients, friends, & families a place to turn when they get the news.
http://www.turnfirst.org/

*“Managing Bowel Problems that Accompany MS”
http://www.unitedspinal.org/msscene/2007/01/16/managing-the- bowel-problems- that-accompany-ms/

*“Controlling the Muscle Spasms of MS”
http://www.msviews.org/msviewsandnews4/index.php/2012-05-28-00-15-54/2012-05-28-00-18-16/632

*"How temperature affects people with Multiple Sclerosis"
http://brainblogger.com/2014/09/13/how-temperature-affects-people-with-multiple-sclerosis/

*"How to Boost Your Immune System"
http://bit.ly/19huu2H

*“Minding Your Mitochondria”
A view on eating better with proper diet - This video is for anybody, with/wo an illness
http://www.youtube.com/watch?v=KLjgBLwH3Wc&feature=youtu.be

*“The Power of Sleep”
http://time.com/3326565/the-power-of-sleep/

*"Health Benefits of Sleeping And How Far They Reach"

*“The Wahls Paleo Diet”
http://www.medicaldaily.com/multiple-sclerosis-diet-doctor- terry-wahls-reverses-ms-diet-alone-249419

*Many links to resources to help persons with disabilities prepare for emergencies
http://www.abil.org/emergency

*Solutions for Cooling Every Body
http://www.polarproducts.com/polarshop/pc/home.asp

* Vitamins & Supplements Online/Health/Diet/VitaSouth
www.vitasouth.com

* Walking Canes
A website that has an extensive selection of cane types and styles.
http://www.walking-canes.net/multiplesclerosisandgait.html

*What is the real impact of MS in America?

* Yoga positions (click here)

 

Other Resources


Advanced Directives for Medical Conditions

A group that offers guidance in drafting these documents is Compassion and Choices
1-800-247-7421

 

Americans with Disabilities Act/Legal/Employment

Associations: Multiple Sclerosis

  • National Multiple Sclerosis Society (NMSS)
    www.nationalmssociety.org
    1-800-344-4867
     
  • Multiple Sclerosis Association of America (MSAA)
    www.mymsaa.org
     
    1-(800) 532-7667
     
  • Multiple Sclerosis Foundation (MSF)
    www.msfocus.org
    1- 888-MSFOCUS
     
  • Multiple Sclerosis International Federation
    http://www.msif.org/en/
     
  • MSstation - MS station TV, Radio, Book Club
    http://multiplesclerosisradio.org/

  • The Consortium of Multiple Sclerosis Centers
    The leading educational and professional development organization for MS healthcare professionals.
    http://www.mscare.org/
     
  • AIMS (Advances In Multiple Sclerosis)Created by the Consortium of Multiple Sclerosis Centers (CMSC), Nurse Practitioner Alternatives (NPA), and The France Foundation. Provides high-quality, up-to-date information on advances in the treatment of MS.
     www.cmeAIMS.org  
     
  • iConquorMS - a Patient-Powered Research Network (PPRN)
    https://www.iconquerms.org/

  • MSology is a free information service offering the latest research news on multiple sclerosis (MS), tips on living
    with the disease, and practical advice to help in making decisions.
    http://msology.ca/     

 

Associations: Other

 

Doctors: Background Check (Profiles, Credentials, Ratings, Reviews)

 

Healthcare/Insurance Information

Medical Information

 

Social Security Disability Benefits/Medicare
To obtain information about Social Security Disability, you can call your local social security office, or go online at www.socialsecurity.gov. Another very informative site for this subject is www.NMSS.org
(Type “social security disability” in the search bar.)

      Getting Extra Help with Medicare Prescription Drug Costs
      http://www.medicareconsumerguide.com/medicare-extra-help     

       Social Security Disability Benefits Guide
       http://www.thesimpledollar.com/disability-benefits-guide/

       Social Security Disability Benefit Calculator
       http://www.thesimpledollar.com/disability-benefits-guide/#social-security-disability-benefit-    calculator

 

Suicide Hotline

 The U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255), is a free, 24/7 service that can provide suicidal          persons or those around them with support, information and resources. (Source: National Institute of Mental Health.)

 

Support

Treatments (DMT) - Pharmas

 *Resource List of Co-Pay Assistance Programs (current as of 1/23/2015):

For Copaxone (Teva), your co-pay assistance source is Shared Solutions at:
https://www.copaxone.com/shared-solutions or call toll-free: 1-800-887-8100

For Avonex, Tysabri, and Tecfidera (Biogen idec), see MSActiveSource at:
http://www.msactivesource.com/ or call toll-free: 1-800-456-2255


For Betaseron (Bayer), see the BETAPLUS® patient support program at:
http://www.betaseron.com/explore-betaseron or call toll-free: 1-800-788-1467


For Gilenya (Novartis), see Patient Assistance Now at:
http://www.patientassistancenow.com/ or call toll-free: 1-800-245-5356


For Aubagio, (Genzyme) see the One to One program at:
https://www.aubagio.com/ms-one-to-one or call toll-free: 1‑855‑676‑6326


For Rebif (Merck Serono), see MS Lifelines at:
http://www.rebif.com/rebif-financial-services
or call toll-free: 1-877-447-3243

 

*Pharma co-pay programs are for commercially-insured patients only. If you have Medicare or Medicaid, call the same numbers to apply to charity organizations that will fund government-insured patients. Either way, they’ll get you covered.