Archive for ‘Living Well With MS

Feb 29 2020 Living with MS in Coronavirus COVID-19 Pandemic

MS Living Well values educating people living with MS globally since 2007.  In this developing coronavirus pandemic, the goal is provide information specific to those living with MS to help determine your risks and ways to protect yourself.  For more info see the CDC’s website on COVID-19.

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A.  LOCATION: plays a major factor.  Higher risk countries are changing: now Europe, United States and Iran have the most new cases (updated March 19, 1920).  The situation is changing rapidly so important to be aware of local evolving risk.  Many people may be carriers of the virus without symptoms.  People can become infected if within 6 feet of someone infected with the coronavirus who coughs or sneezes or by touching surfaces infected and then touching your face, nose or possibly your eyes.

B. IMMUNE STATUS:  Many multiple sclerosis medications could put a person at increased risk of serious complications from coronavirus infection including pneumonia or even death.  All FDA-approved medications to change the disease course of multiple sclerosis impact the immune system.  As a consequence, your ability to fight the viral infection may not be as robust.  Many MS medications have been studied to make sure that people can still mount an immune response to new virus while the medication is being taken.

Ocrevus, Gilenya and Mayzent have been associated with an increased risk of respiratory infections in clinical trials and might make MS patients on these medications at increased risk of coronavirus complications.   Lemtrada and Mavenclad could also potentially put people with MS at higher risk of serious complications during the year after the last treatment course.  Whether Tecfidera, Vumerity or Tysabri treatment would impact susceptibility to coronavirus complications is unclear.  Teriflunomide is likely low risk for increased complications.  Copaxone and interferons (Avonex, Betaseron, Extavia, Plegridy and Rebif) are likely quite safe as well.  NEVER STOP YOUR MS MEDICATION ON YOUR OWN SINCE COULD LEAD TO PERMANENT SEVERE DISABILITY. ALWAYS CONSULT WITH YOUR HEALTHCARE PROVIDERS BEFORE MAKING TREATMENT DECISIONS.

C. AGE and DISABILITY:   Elderly patients are at greater risk of death.  Overall, the risk of death is estimated at 2-3% of infected COVID-19 patients.  People with MS with higher levels of disability such as with moderate to severe weakness in arms and legs may be more vulnerable to coronavirus complications.


A.  Avoid close contact with people who are sick.

B.  Avoid touching your eyes, nose, and mouth.

C. Cover your cough or sneeze with a tissue, then throw the tissue in the trash.

D. Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.  The virus can linger for a few days on plastic and steel.

E. Facemasks are not recommended by the CDC for people that are healthy.  N95 masks are effective but generally reserved for healthcare works treating sick coronavirus patients.

F. Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.  If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.

G. Stock up on supplies at home if you are at higher risk for complications.  As infection rates soar, you will be prepared to avoid public places for shopping.

H. Would avoid travel including airplane flights and cruises. Avoid attending group gatherings such as meetings, religious events and sporting events in higher risk areas.

I. Notify your healthcare providers immediately if having fever, cough or shortness of breath.



Feb 23 2014 Are You Taking Your MS Medication Regularly?

Treatment adherence (taking your multiple sclerosis medication regularly) can have a direct impact on how well you live with MS.  Not taking medication regularly has been associated with more relapses.   Many obstacles prevent medications from being taken regularly.  People with MS sometimes minimize the severity of the disease, forget to take doses, have needle phobia and/or experience treatment side effects.  Out-of-pocket costs and insurance issues can lead to a lapse in treatment. Partner with your healthcare provider(s) to find solutions to help you stay on path.

Specialty pharmacies are actually collecting data on whether you are refilling your medication regularly.  If you refill on time because your taking your medication as directed, you will have a high medication possession ratio.  As expected, low medication possession ratios on Copaxone and interferons have been associated with more MS relapses.

Educating yourself about MS and keeping long-term goals in mind will help you stick with your treatment plan.  If having side effects or injection site issues, talk to your doctor about ways to potential minimize these issues.  Alternative treatment options can be explored if desired.  Pharmaceutical companies that make the various MS meds can help with co-pay assistance and often provide free medication to uninsured or underinsured individuals if not on Medicare or Medicaid.  Patient assistance programs are available to help with costs for people on government insurance plans.

Jul 29 2013 What’s Your Exercise Plan?

Critical to living well with MS is exercise.  Finding a regimen matching your abilities is important.  Poor balance and leg weakness an issue?  Try a recumbent stationary bike.  Save some cash and buy someone’s barely-used bike sitting in the basement!   Yoga is great for balance.  MS classes for Yoga can be found in larger cities.  Otherwise, purchase a Yoga video.  Swimming makes balance less of an issue and keeps the body temperature cool for more endurance.  Confined to a wheelchair?  Leg stretches and arm weights can be very effective.

If you have little limitations, go for it.  Some of you are already marathon runners and triathletes!  Keeping a strong as possible is hard work, but the pay off is great over the long term.  Make your plan and stick with it!

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Dec 21 2010 Happy Holidays! Here’s to a Healthy New Year!

As we start 2011 together, it’s a great time to recommit to helping yourself and those close to you.  Got a plan?   Exercise is a great start!   Sign up for a class, buy a yoga tape, or join a gym.  If your legs are weak, consider a recumbent bike or focus on arms with weights.   The more you do, the stronger you will be.   Shake up your diet, if needed.  Skip the fried food and roll out the fresh fruits and vegetables.  Drink more water and ditch the sweetened soda.  Follow through on stop smoking.

You be the model for your friends and families.  The payoff will be great!