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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,



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.

Download and print a copy:





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


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.


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.


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).


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.


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.


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.


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.


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.


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 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

6 Tips to Fundraise for MSA

6 Tips to Fundraise for MSA

With “6 Tips to Fundraise for MSA” you can become an important member of the cause! The Multiple System Atrophy Coalition has made great strides to create an era of hope for those suffering from multiple system atrophy. With hopes to foster collaboration within our community, the MSA Coalition encourages its supporters to advocate for those with MSA. As our organization expands in skills, research, and impact, we are looking to the MSA community to participate in and organize live fundraiser events. Everybody in the MSA community needs to become a fundraiser. It is by far the most realistic way multiple system atrophy will receive the funding it needs to achieve major breakthroughs in diagnosis, treatment, and outcomes.

We have created 6 tips to fundraise for MSA and listed them below. Getting started on your own fundraiser for MSA is the most impactful way you can help the cause. Together, we can make a difference as we work to provide real hope for those with multiple system atrophy.

1. Choose An Event Format or Theme

By hosting a fundraiser for MSA, we are hoping to inspire awareness and participation. In order to encourage action at these events, creativity is key! A unique and entertaining event theme will

The Williams Family at their Fundraiser to Fight MSA. They use several of our 6 tips to fundraise for MSA

The Williams Family at their MSA Fundraiser

boost registrations and strengthen impact for MSA! First consider your target audience. Who do you want to invite to your fundraiser? Would your demographic be more inclined to support a 5K race, fashion show, or benefit dinner?

Land on an event theme that you feel will build excitement. Here’s a few ideas to get you started.

  • Golf Tournament: Find a local golf course and request that they donate a few less popular hours to your cause. Athletic events are a great way to get your supporters outside and create a little friendly competition!
  • Pancake Breakfast: Who wouldn’t support MSA when there’s food available? Ask a few volunteers to assist in the preparation and cooking, and ensure that there are options for everyone — vegan, gluten-free, and sugar-free foods included!
  • Carnival: Invest in whatever you feel is appropriate. Carousels are fun, but homemade booths and costumes make for a more personalized event experience.

Need more inspiration? Here’s a list of fundraiser ideas you can use.

2. Establish a Budget

Managing your event’s budget isn’t easy. Perhaps the most important factor is starting the budgeting process early and giving yourself ample time to research potential costs. Put together a rough estimate of the capital you have to work with, but make sure to leave room for unexpected expenses. These will almost always arise, and you want to ensure you’re covered in an emergency.

Research is crucial! Shop around and get multiple quotes before selecting a vendor. Even if you have found your perfect vendor, they may be willing to price match if you can find something cheaper. As new quotes come in, be sure to update your budget sheet.

Document everything– create an Excel Spreadsheet or Google Sheet from the very beginning. When creating a budget document, be sure to include all income or expenses, no matter how small. Small purchases can easily creep up and control more of your budget than you might think. We recommend using formulas in your spreadsheet, which will minimize any errors in you budget.

This family used all 6 tips to fundraise for MSA3. Choose a Venue

When selecting a venue for your event, try looking beyond your typical event halls or convention centers. Some of the most exciting fundraisers take place at alternative event spaces, like barns, rooftop gardens, or airport hangars. Think creatively, but make sure to ask keep in mind, budget, attendee capacity, discounts, and package (what’s included in the price).

4. Find a Ticketing or Registration Platform

Once you have finalized all the planning details, give your attendees an easy way to register and order tickets. A nonprofit registration platform makes it easy for your potential attendees to pay online and share your event with others. In addition, it is simple to manage donations, ticketing, and marketing.

5. Market Your Event

When tickets are available, it’s time to spread the word and generate excitement for your fundraiser! Create an event on Facebook that you can share on other social media platforms. Followers of your charity can learn more about your event, and share with friends and family. As word spreads, so will MSA awareness. Be sure to include all the details as well as the registration page! Create flyers to gain local attention and be sure to distribute them widely. Free online graphic design websites make it easy to design custom posters without the hassle of software programs.

6. Follow Up and Review

After your event, sit down and determine the pros and cons of your event. What worked and what didn’t? Noting things that you can fix will make it that much easier to plan your next fundraiser.

One of the easiest ways to generate feedback is through attendee response. Create a short online survey and email it to those who attended your event. A useful survey is short, sent out quickly, and limited to multiple choice questions. Keeping these factors in mind will produce useful data on your event.

For more information on setting up an MSA Fundraising Event: Visit here!

Please let us know what you think of our blog “6 Tips to Fundraise for MSA” in the comments below! We also encourage you to share your own tips and ideas for fundraising.

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 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:

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