CoronaVirus Information for the Multiple System Atrophy Community

CoronaVirus Information for the Multiple System Atrophy Community

While we don’t know if a patient with a neurodegenerative disease is more vulnerable to be infected, we would expect that anyone with a chronic illness is more frail and immunocompromised than other members of our community. In particular, patients who have respiratory compromise would be expected to be more vulnerable because COVID-19 is primarily a disease of the lungs and respiratory tract. Many patients with MSA do develop impaired respiratory (breathing) control and, in more advanced stages, develop pneumonias. As such, we would urge patients with MSA to take especially vigorous precautions against exposure to COVID-19, including frequent hand washing/sanitizing, restricted exposure to others and not delay in seeking medical advice if symptoms of fever, cough or shortness of breath develop.

About The CoronaVirus:

COVID-19 (coronavirus disease 2019) is a respiratory tract infection caused by SARS-CoV-2 virus. Coronaviruses are responsible for about 15-20% of common colds, but there are times when new viruses enter the human population for the first time. When this happens, sometimes there is little to no protection from our previous exposures to coronavirus because the virus is so different. This seems to be the case with COVID-19.

The Infection

COVID-19 has been seen mostly in Asia, primarily China, South Korea, and Japan, but has recently spread to Europe (Italy), the middle East (Iran), and the United States with 44 states now reporting cases. While many have experienced only mild symptoms (runny nose, cough, and cold-like symptoms), some people, particularly the elderly and those with underlying medical problems, have experienced severe disease in the lower parts of their lungs (pneumonia). Young adults have been infrequently affected, and children <12 years old have largely been protected from developing COVID-19 disease.

General Concerns

There are two primary concerns that physicians and scientists have raised. First, the mortality rate of COVID-19 may be substantially higher than for other respiratory viruses. Right now, the mortality rate is estimated to be between 1-3%; in contrast, the mortality rate for influenza is about 10-30 times less (about 0.1%). Undoubtedly, the mortality rate will be less than currently estimated since we don’t know the true number of mild infections; nevertheless, there remains a real concern that COVID-19 is more severe than what we are used to seeing with other seasonal viruses. Second, the virus spreads efficiently, being transmitted before symptoms occur and staying in the nose and saliva for days to weeks after symptoms improve.

COVID-19 Misconceptions

There have been numerous misconceptions that have arisen.

The biggest misconception is that masks are not useful for slowing the spread of COVID-19..

Masks are essential for slowing the spread between people:

  • If a person is sick (even asymptomatic) wearing a mask will help keep them from spreading the virus by trapping their air particles in their mask.
  • Masks are now believed to help protect individuals wearing them from getting COVID-19.

Conclusion: You should wear a mask and you should avoid people who are not wearing a mask.

Recommendations for the MSA Community

This is an important time to be prepared but not panicked. Practical steps should be taken by MSA patients and those in close contact with them to lower the risk of exposure to COVID-19:

  • Use careful hand hygiene by washing hands frequently with soap and water or hand sanitizer that contains at least 60% alcohol. In other words, wash your hands like you just touched hot peppers and need to take your contact lenses out.
  • Wear a mask and stay physically distanced (at least 6 feet apart) if you have visitors or must go out.
  • Require any visitor (home nurses, etc.) to wear a mask when in your home.
  • Stay home as much as possible and avoid crowds of people where the risk of spreading and thus getting COVID-19 is high.

These important strategies can help lower your chances of contracting COVID-19.

For the most up to date information on COVID-19 please reference the CDC website.

Watch the MSA Coalition’s Webinar

MSA Care Amidst The Pandemic:

COVID-19

Recorded on April 20, 2020

Resources on MSA and COVID-19

The Dysautonomia Center at NYU issued this guidance for MSA patients, including answers to frequently asked questions. This article is an especially useful compendium and we highly recommend it. If you are wondering whether to keep your appointments, or how to handle home health care visits, this is a great resource.

General COVID-19 Information
In the United States, we rely on the Centers for Disease Control and Prevention for information and advice; the website is here.

Information for those enrolled in the Verdiperstat Phase 3 Clinical Trial
Biohaven Pharmaceuticals have provided some answers to patient questions regarding the ongoing administration of this important clinical trial during this time of uncertainty. Read our blog with Q&A here.

Self-care in a distressing time
Living in the time of COVID-19, and especially when also dealing with a difficult disease, requires great psychological energy. Many mental health professionals have good advice for all of us as we practice social distancing, sheltering in place, or, in some cases, are quarantined. Here are a few good practices:

  • Stick to a routine
  • Get outdoors, if you are able, at least once a day for thirty minutes, maintaining social distancing guidelines
  • Stay hydrated and eat good food
  • Get your COVID-19 information from reliable medical sources
  • Try to focus on the good in the world, the people who are helping
  • Remind yourself that this is temporary
  • As much as possible, be kind to yourself and patient with those near and dear to you

If you need help, reach out to appropriate resources and providers in your community. And again, we at the MSA Coalition are a phone call away at 866-737-5999. We will return your call and try to direct you to assistance.
If you would rather use email, our address is info@multiplesystematrophy.org. You can see updated information at our website, www.msacoalition.org.

Communicating with Others
The Coalition maintains several Facebook groups to provide those in the community with information and a place to ask questions. These groups and pages are monitored, and include the following:

The MSA Coalition Facebook Page

Public Groups:

MSA Coalition Public Discussion group (7500 members)
MSA Research News group (2900 members)

Private Groups:

MSA Buddies group (4300 members)
MSA A Patients Journey group (400 members)
MSA Widows and Widowers group (200 members)
Children of MSA Warriors (270 members)
MSA Coalition Volunteers (700 members)

US Regional Groups (Private):

MSA New England regional group
MSA Middle Atlantic regional group
MSA South Atlantic regional group
MSA Northeast central regional group
MSA Northwest central regional group
MSA Southeast central regional group
MSA Southwest central regional group
MSA Mountain regional group
MSA Pacific regional group

We are here to help!
This is uncharted territory for all of us. It will take all of us acting together for the common good to flatten the curve and get through it. History shows us other generations have faced crises and emerged stronger, and we all know that the MSA community shows its resilience time and time again. Together, we are strong.

Stay safe. Take care of each other. Wash your hands.

How To Communicate With Multiple System Atrophy Patients

How To Communicate With Multiple System Atrophy Patients

Guest Blog by MSA patient Jackie Vandenberg

I wrote this letter to my friends and family so they would better know how to communicate with me due to speech issues associated with multiple system atrophy. Others might find it helpful in communicating with their loved ones as well.

Dear friends and family,

I always appreciate when friends and family come to visit. I noticed lately that some people struggle knowing how to talk with me as my ability to communicate decreases. I have brainstormed a few things on how to communicate with me and other MSA patients struggling with the speech:

1) I enjoy socializing even though I cannot speak back. I’m interested and am listening when others tell me about themselves. I like to hear about how people are doing, their families, hobbies, vacations, experiences, weekend activities, etc.

2) I wish to be spoken to as a person and an adult. Please speak to me normally by not using slower or louder speech, or a reduced vocabulary and sentence structures. I like to be part of the conversation by making eye contact and being spoken to directly.

3) It’s easier/quicker for me to be asked ‘yes’ or ‘no’ questions.

4) When we’re together you can talk or not talk, either is fine. I’m comfortable with quiet too.

5) I use a piece of cardboard with the alphabet written out to communicate, we call it a Ouija Board. I can point to letters to spell out words. I need someone else to hold the cardboard and adjust it as I go. It can take a while for me to spell out sentences so I appreciate everyone’s patience. It’s ok if you don’t understand a word the first few times, as Tom and Adrianne can attest to.

6) When I’m using the Dynovox communication device it’s ok to fix letters/autocorrect for me.

7) A symptom of MSA is excessive drooling. If you’re comfortable doing so you can use a tissue or washcloth to wipe my mouth.

8) The best way to contact me to make plans is on Tom’s cell phone through call or text. I check my email and Facebook messenger every couple of days and am happy to get messages there too.

I hope these eight tips on how to communicate to those with MSA are helpful for everyone! I love having friends and family visit and appreciate all of our time together.

With Love,

Jackie

 

A Multiple System Atrophy Awareness Video

Featuring Jackie VanDenberg

About The MSA Coalition

The Multiple System Atrophy (MSA) Coalition is a 501(c)(3) charitable organization with a 30-year history of devotion to improving the quality of life and building hope for people living with MSA. The four pillars of our mission include:

Education: Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information.

Trusted Emotional Support: Providing patients and caregivers with trusted and compassionate emotional support.

Community: Building a sense of community by connecting and unifying people affected by MSA.

Funding Patient-Centric MSA Research: Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure.

 

Top 10 Lesser-Known Things to Consider About Multiple System Atrophy

Top 10 Lesser-Known Things to Consider About Multiple System Atrophy

These are things not normally highlighted in traditional literature about Multiple System Atrophy. This list was compiled by the MSA Coalition from the collective experience (since 1995) of hundreds of members of the MSA online support group founded by Vanderbilt University Autonomic Dysfunction Center staff. http://groups.yahoo.com/group/shydrager

Download and print a copy:

English: https://www.multiplesystematrophy.org/wp-content/uploads/2019/07/TOP-TEN-THINGS-YOU-NEED-TO-KNOW-ABOUT-MULTIPLE-SYSTEM-ATROPHY_v1.0.pdf

Deutsch: https://www.multiplesystematrophy.org/wp-content/uploads/2019/10/German_TOP-TEN-THINGS-YOU-NEED-TO-KNOW-ABOUT-MULTIPLE-SYSTEM-ATROPHY_v1.1.pdf

Espanol: https://www.multiplesystematrophy.org/wp-content/uploads/2020/02/DIEZ-COSAS-QUE-NECESITA-SABER-SOBRE-LA-ATROFIA-MULTISISTÉMICA_v1.0_ES-1.pdf

1. WATCH FOR SLEEP AND BREATHING PROBLEMS

Sleep and breathing problems are very common in MSA patients. Sleep apnea (momentary lapses in breathing), respiratory stridor (noisy breathing), REM behavior disorder (shouting and acting out dreams) and excessive daytime sleepiness can be among the earliest symptoms of MSA. Sleep apnea is very serious and can lead to sudden death during sleep. Ask your bed partner if you snore, breathe loudly in your sleep, talk in your sleep or act out your dreams. Ask to be referred to a sleep specialist for a sleep study often this can be performed in your own home. Not getting a good night’s sleep can make other MSA symptoms seem worse both for the patient and the caregiver. Sleep and breathing .

problems can be easily treated with a CPAP or Bi-Pap – this is a mask with pressurized air worn at night

2. BE AWARE OF SITUATIONS THAT CAN AFFECT BLOOD PRESSURE

Blood pressure can DROP suddenly (hypotension) in several situations: 1. After getting up in the morning – drink a large glass (12 oz or more) of plain water before getting out of bed to raise your blood pressure and take your morning medications and wait 15-20 minutes to allow them time to work before getting up. 2. During a bowel movement – use a footstool in front of the toilet to keep your legs up and your blood pressure up. 3. After a large meal – eat 5 or 6 small meals instead of larger meals. 4. After standing in one place for a long time – sit whenever possible TIP: If someone feels faint or passes out, lay them down and elevate their legs above the level of the heart. Blood Pressure can also SPIKE UPWARD (hypertension) in several situations: 1. When lying flat (supine) during sleep – raise the head of the bed 4 to 6 inches higher than the foot of the bed at night to help prevent this. TIP: If the blood pressure is too high while laying down, sitting up or standing can bring it back down quickly. Remind your doctors that they should not overreact to a high supine blood pressure.

3. PREVENT INFECTIONS

MSA patients often register a body temperature that is a degree or more below normal. Because of this a fever may not be detected. Any sudden worsening of symptoms or confusion could be a sign of infection. An even lower temperature than the normally (MSA) low temperature can also be a sign of infection. Be vigilant about preventing and detecting all types of infections urinary tract (UTI) and lung infections (PNEUMONIA) are very common. Stay well hydrated (64 oz fluid per day) to prevent urinary tract infections. Stay dry and shift weight often to prevent skin pressure sores. Swallow carefully to avoid choking and aspiration. Puree foods when swallowing becomes difficult. Get speech and swallowing therapy to avoid aspiration pneumonia. Watch for bowel blockage from chronic constipation.

4. BE CAREFUL OF SURGERY/ANESTHESIA

If an MSA patient is to have any dental work or surgery, a local anesthetic should be the preferred choice if possible. However, some local anesthetics contain adrenaline which may adversely affect blood pressure. Ensure that the dentist or surgeon and anesthesiologist know that MSA affects the autonomic nervous system. The MSA patient must be well hydrated via IV before and during surgery to maintain a safe blood pressure. Another note on surgery: Prostate surgery should only occur if the urologist and neurologist have had a consultation with each other and agree that prostate enlargement is the cause of urinary retention (since this is a common symptom of MSA which does not improve with prostate surgery).

5. BE CAREFUL WITH OVER-THE-COUNTER COLD/FLU/ALLERGY MEDICATIONS

Many of these medications contain pseudoephedrine that can affect the heart and raise blood pressure, to dangerous levels. They also may interact with prescribed medications. Be very careful and consult your doctor before mixing any medications, including over-the-counter remedies or even vitamins.

6. PREVENT FALLS

Preventing falls is very important, if you fall and break a bone you may become bedridden and more prone to infections. When it becomes appropriate use a cane, walker or wheelchair. Install grab bars in the bathroom, use a raised toilet, use a shower chair or bench, use a Hoyer lift for transfers.

7. AVOID EXTREME HEAT OR COLD

MSA can affect the body’s ability to sweat and to maintain a proper core temperature. It’s important to stay cool during hot or humid weather and stay warm during cooler weather. Also avoid very hot baths and showers.

8. EXERCISE!

It’s important to maintain strength and flexibility for as long as possible. Do range of motion exercises and any gentle exercise that can be done when sitting. Water exercises are easy to do and very helpful. Practice speech exercises along with the other exercises to help maintain strength and clarity of voice for as long as possible. Ask for physical and occupational and speech therapy as these are all known to be beneficial to MSA patients.

9. PREPARE FOR EMERGENCY ROOM VISITS

Keep a short description of your medical history, a description of MSA, and your most recent medications list handy so you can take it with you to any new doctors’ appointments, hand it over in an emergency room, give it to caregivers, etc. If you are in any of those situations, it’s much easier to have something pre-prepared, especially if you’re talking to people who have never heard of MSA.

10. BE READY TO ADVOCATE AND TO COORDINATE A TEAM OF DOCTORS

Be ready to “advocate” with your doctors, or ask a trusted friend, family member or caregiver to play this role. MSA is a complex disorder and not every doctor will have heard of it, find a doctor you trust who is willing to learn. There is literature available and there are known MSA expert neurologists who can act as consultants. At each appointment try to focus on 1 or 2 concerns to get them addressed adequately. Have a buddy with you who will make sure you are heard! Often your general practitioner can help play the coordinator role by referring you to other experts such as a neurologist, internist, cardiologist, urologist etc. If you are participating in research studies or if you are using health supplements, let all your doctors know about this.

Also, you should spend some time thinking about your “advance directives” and make it clear to your family members, caregivers and health care providers if you have made a decision about which emergency treatments you want or don’t want (such as resuscitation, intubation or feeding tubes). Remember that you can ALWAYS change your mind and change your advance directives.

 

For more information, please see the Multiple System Atrophy Coalition website www.MultipleSystemAtrophy.org or call the toll-free support line 1-866-737-5999

 

DISCLAIMER: This information is intended to aid MSA patients and their families in their discussions with clinicians. It should not be considered medical advice or endorsements of drugs or therapies. Always consult a licensed medical practitioner for expert care.

Copyright © The Multiple System Atrophy Coalition, Inc. – Originally compiled by Pam Bower December 9, 2010, Last updated February 23, 2019

Advice and Tips from the Multiple System Atrophy Community

Advice and Tips from the Multiple System Atrophy Community

One of the great things about social media is that it connects people with similar rare diseases forming virtual communities. These groups can provide real comfort, education and advice from others going through the same experience. This shared advice and tips are shared at the multiple system atrophy patient and family conferenceexperience is valuable in so many ways, including:

  • Avoiding the feeling of being alone with a disorder nobody has heard about
  • Forming real and lasting bonds with others affected by MSA
  • Being able to ask questions or seek advice about any aspect of daily life with MSA
  • Sharing your experience, concerns, daily wins and losses, laughter, tears

As an example of sharing on social media and to generate actual tips and advice for this blog post we posted the question on The MSA Coalition Facebook page:

What is your one best tip or piece of advice for other MSA patients and/or caregivers?

Here are the first few responses we have received:

  • Remember it is the MSA taking over as your loved one acts very different than normally. Keep the good memories close!
  • Keeping a sense of humor to balance out the deep sadness that comes with having this disease or a loved one having this disease. One of my mom’s favorite things that I do is rub her feet and lower legs with almond oil and lavender oil.
  • Keep up with physical therapy for as long as you can do it (or afford it), and (here’s the tough one) try to stay positive.
  • Please keep a notebook of doctors’ visits, therapy, medication
  • Go slow, don’t take mobility risks, enjoy life while you can, always try to remember the good stuff, and not the bad, breathe!🙂 Sorry, more than one tip!
  • Exercise, physical therapy, & voice therapy as it helps with keeping swallowing muscles stronger long
  • Ask for help. I didn’t have family I could rely on so I found a couple of co-workers that I asked to help support me, they are now more than co-workers
  • Live life to the fullest. Do not let the disease define you.
  • Come together as a family unit. No one person can make it through alone. Also laugh when you can enjoy the time you have with them. Under the physical symptoms is still the person who was there before they got sick.
  • Just laugh and keep going until you can’t go anymore
  • Always remember the person you’re looking after, inside, is still the same funny wonderful person they were before, and and treat them with dignity.
  • Some advice for caregivers like myself, DO NOT BE AFRAID TO ASK FOR HELP! And, you have to take care of you in the process or you will literally be worn down to nothing
  • Patience and love. You are not alone
    My husband passed away from this terrible disease in 2009. He was a sick for 5 years.so I do know how difficult it is.
  • Don’t hold back any information from your kids. They must know what you as the patient or caregiver is going through or have to do. You cannot protect them from this. If you do you may find yourself in the wrong on their eyes. Be strong and out spoken and reach out when you need help.
  • Find support to help you as the caretaker! It takes a tribe! Cherish every minute, have no regrets!
  • Talk about the end early on. Have a plan before it’s too late for the person with MSA to make the decisions. Once that’s out of the way live life to its fullest!

We encourage you to join one or more MSA Facebook support groups that are linked to The MSA Coalition page to connect with others and share ideas for coping. Look for the group tab and you’ll see public and private groups, regional groups and special interest groups. A good group to start with is this private group which is a mix of both patients and care partners: https://www.facebook.com/groups/MSABuddies/

The Multiple System Atrophy Coalition has a vibrant and engaged following on Facebook. With more than 14,200 followers it is the largest MSA group on social media. We strongly recommend “Liking” and “Following” our page and then engaging in conversations via the comment section. MSA is very rare but there is no need to go it alone. Also, a great way to generate awareness for this little-known disease is to “Share” our posts to your own timeline