March is MS Awareness Month and what most people are unaware of is that those of us living with MS need resources to live better.
In fact, there is a complete lack of free resources to help people deal with the emotional impact of diagnosis or the cumulative effect on mental health after years of living with an unpredictable and life-changing disease.
MS Awareness Fact #1- MS is scary
Most people diagnosed with MS are sent back into the world uncertain of how they still fit in. We receive no mental health counseling to help us cope with the shock of learning we have a progressive debilitating incurable disease. We need resources to learn stress management and coping strategies and guidance on how to mentally transition to living life with a chronic illness.
MS Awareness Fact #2- MS is not for the weak
With MS you learn right away that you are stronger than you think you are. (And, no, I’m not quoting Winnie the Pooh!) Trying to live in a body that constantly defies you teaches you resilience and perseverance. You don’t really have any option except to continuously face challenges, adapt, and keep on going. We need resources for affordable physical, occupational, and cognitive therapy treatments to deal with symptoms and progression and their effect on our bodies.
MS Awareness Fact #3- MS is expensive
In addition to the unconscionable cost of Disease-Modifying Treatments, I find that one of the biggest concerns in the MS community is the inability to afford household expenses and basic daily necessities due to lost income and high medical costs.
Compound that with the scarcity of available disability and long-term health care insurance policies and exorbitant life insurance premiums also due to MS, and we’re assured of financial hardship in our later years. We need resources for affordable insurance premiums and fair assessments of our personal situations and health, rather than to be penalized for just having the diagnosis of MS.
Resources to help the MS community live better
Organizations that provide programs, services, grants, treatment information, support, and more:
Multiple Sclerosis Association of America: MSAA has three main programs:
- Cooling, which includes cooling kits featuring products like cooling vests, collars, hats, and pillowcases.
- MRI Access Fund provides financial support.
- Equipment Distribution includes wheelchairs, canes, walkers, hospital beds, grab bars, easy-grip dishes and utensils, toilet seat raisers, tools to make dressing easier.
Multiple Sclerosis Foundation: Offers programs for cooling, computers, and assistive technology. MS Focus provides grants for:
- Emergency Assistance
- Healthcare Assistance
- Home Care Assistance
- Health & Wellness
- Brighter Tomorrow Grant
National Multiple Sclerosis Society: Connects you with other resources and services to help with the financial challenges of paying for heating, cooling, rent, mortgage, temporary home health aides, transportation, accessibility modifications to homes and automobiles, and durable medical equipment. They also provide free in-home case management.
Can Do MS: Provides free online health and wellness educational programs including interactive webinars to learn skills and tools to adopt healthy lifestyle behaviors.
Financial assistance resources:
Grants and copay assistance programs to help pay for Multiple Sclerosis drugs (and others)
- Pan Foundation
- HealthWell Foundation
- The Assistance Fund
- Patient Advocate Foundation Co-Pay Relief Program
- Patient Services Program
- Needy Meds
Social Security Disability Resources:
- Requirements for SSDI: https://www.ssa.gov/benefits/disability/qualify.html
- Apply for Social Security Disability benefits: https://secure.ssa.gov/iClaim/dib
- Checklist to apply for Social Security Disability https://www.ssa.gov/hlp/radr/10/ovw001-checklist.pdf
- Social Security ADL Questionaire- Adult Function Report: https://www.ssa.gov/forms/ssa-3373-bk.pdf
- NMSS Guidebook for people with MS applying for SSDI https://www.nationalmssociety.org/nationalmssociety/media/msnationalfiles/brochures/guidebook-social-security-disability-for-people-with-ms.pdf
- Disability evaluation for Multiple Sclerosis: https://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm
Help with Medicare:
The National Council on Aging Medicare information:
Personal care assistance program:
Medication assistance and information:
- Manufacturer Assistance for MS Disease-Modifying Treatments https://www.nationalmssociety.org/Treating-MS/Medications/Patient-Assistance-Programs#section-1
Local, state, and national resources (US)
- https://www.hhs.gov/programs/index.html Local and state resources.
- United Way connects people with community resources and programs.
- https://www.211.org/ Put in your zip code to connect with local resources
- https://gatherms.com/nationwide Connect with national and local services
- https://www.mscenter.org/ Rocky Mountain MS Center provides a comprehensive and integrated wellness approach to MS and related diseases, life-changing support services, and cutting-edge research.
- https://ncil.org/ To find an independent living center, call your state’s vocational rehabilitation agency. You can also call the National Council on Independent Living.
- https://emilyn.app/home/ Emilyn is an MS app to keep track of symptoms. It has a community button where you can connect with others and a Learn button to read MS-related articles.
- https://www.spoonieday.com/ An app developed by Julie Blackburn, to Track, Plan & Manage your daily energy output (spoons).
- Well Spouse Association for caregivers
- Disability Trading Zone on Facebook. A store that allows its members to Buy, Sell or Trade their items that make lives easier.
- https://curbfreewithcorylee.com/2020/09/12/best-wheelchair-accessible-beaches-in-florida/ Beach wheelchair accessibility in Florida.
- https://www.mssociety.org.uk/care-and-support/financial-help/apply-for-an-ms-society-grant Offers two grants: Health and Wellbeing and Carer’s Grant.
- https://www.ms-researchandrelief.org/grants/ Offers financial assistance for aids, adaptions, and equipment.
- https://www.mstrust.org.uk/life-ms/your-finances/grants-and-financial-help Lists a variety of resources to explore.
Most of the resources listed are in the US. I had difficulty finding resources for other countries. If anyone has other resources to share that are relevant to living with Multiple Sclerosis, please email me: firstname.lastname@example.org .
Living with MS can be a challenge but finding the resources needed to live better with Multiple Sclerosis should not be one of them.
The links shared in this article are for informational use only. Please verify all resources.
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