caregiver Archives | Multiple System Atrophy Coalition

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

by MSA Coalition | Mar 1, 2019 | MSA-Blog

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.

It Takes a Community to Fight Multiple System Atrophy

by admin | Mar 22, 2016 | MSA-Blog

A Multiple System Atrophy Caregiver Speaks for Her Husband

When Jim and Marilee Anderson discuss their experience with Multiple System Atrophy, Marilee speaks for both of them. While Jim’s cognitive skills are as sharp as ever, his speech has become nearly inaudible. As he whispers, Marilee understands perfectly, relaying and amplifying as Jim nods slightly in agreement.

In recalling Jim’s diagnosis, Marilee relates an experience familiar to many with Multiple System Atrophy.

“In 2008, Jim began experiencing symptoms that his primary care physician couldn’t explain,” says Marilee. “Then in 2010, a neurologist diagnosed Parkinson’s disease, but it never seemed to fit.” As symptoms progressed that year and the Andersons continued seeking answers, they got an important clue after an exam at a Parkinson’s center. Marilee requested a copy of the doctor’s notes and saw one simple line that changed their lives: “Cannot rule out MSA.”

Marilee got online, learned that MSA is Multiple System Atrophy, and began reading. “At first, it was like the clouds lifted – it was a relief to see an exact description of his condition,” says Marilee. “And then there was this overwhelming feeling of dread because I read that there’s no cure and that Jim’s lifespan was more limited than we had thought.” The Parkinson’s center confirmed a diagnosis of Multiple System Atrophy in a follow-up visit.

As the disease progressed, it took more and more away from Jim. “He was getting weak, and quickly,” says Marilee. “By June 2011 he had to quit his job. He was frequently dizzy and started to fall – often. It was as if someone had just taken his balance away from him. And there were the wild blood pressure swings, like one that caused him to collapse in church and have to be rushed to the emergency room – where absolutely nobody had ever heard of Multiple System Atrophy.”

Since then, Marilee has been prepared to teach every doctor Jim sees about MSA and where to go for more information – specifically, to the MSA Coalition. “And it’s not just doctors who need to understand,” says Marilee. “It’s also family and friends. We’ve found that some friends won’t come over as often, and we understand why visits can be difficult. Family and friends who do stick with us are something Multiple System Atrophy can’t take away from Jim. It’s building love that is tried and true and tested by fire, and that’s the best love of all.”

Marilee and Jim were joined at the most recent annual MSA Coalition Conference by “Team Jim” – their son Joel, two of their dearest friends and three family members. “Being here together and sharing information with others in the same situation we’re in has made such an impact on us,” says Marilee. “In their literature and in their conference, the information the MSA Coalition provides is consistent and well-researched, and comes from a medical perspective, a caregiver perspective and an ‘anyone who wants to know more’ perspective.”

Marilee says she can’t point to any single aspect of the MSA Coalition as being most important. “You can’t fund research about a disease nobody knows about, because it’s the awareness of the disease that drives interest in researching it,” says Marilee. “And you can’t really know Multiple System Atrophy without a force like the MSA Coalition giving it a face. It all comes together in a synergistic way that gives the Coalition great value. I’m donating this year, and I hope others will join us in that.”

To learn more about Multiple System Atrophy, The MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.

To learn more about how you can support The MSA Coalition’s efforts to battle this rare disorder and donate now, please visit www.multiplesystematrophy.org/donate-now.

A Caregiver to MSA Caregivers

by admin | Dec 21, 2015 | MSA-Blog

The Will to Help Never Leaves

Vera James lost her husband, Fred, to Multiple System Atrophy in 2003, marking her transformation from experienced caregiver to vital resource for countless others. In addition to serving on the MSA Coalition board of directors, Vera answers calls on an MSA Hotline in her home, at all hours – and that, she says, is just fine.

Vera’s introduction to Multiple System Atrophy mirrors the experience of many who have dealt with this disease. “Fred was initially misdiagnosed with Parkinson’s, and when we finally got a correct diagnosis, the physician knew very little about Multiple System Atrophy,” says Vera. “I found the information I needed online, first through a Yahoo! MSA support group and then from the MSA Coalition, which the Yahoo! group pointed me to.”

As Fred’s condition deteriorated, Vera used the information she received to sharpen her caregiver skills. “At first, he could do most everything for himself,” she says. “But I gradually took over giving him baths, helping him get dressed, helping him get out of chairs, and eventually speaking for him and even rolling him over at night so he could get a little more rest.”

Through it all, Vera says, “Multiple System Atrophy couldn’t take away our love for each other. If anything, the disease brought us closer together. We learned a lot about our commitments to each other and the meaning of our wedding vows. And even though it took Fred, Multiple System Atrophy could not take the fact that I care deeply about those who have this disease. I’ve channeled my passion since then to helping others face this disorder.”

In fact, Vera attended her first annual MSA Coalition Patient/Caregiver Conference shortly after Fred’s passing; it was the first of the conferences held near her home. As a follow-up to conversations she had there, Vera agreed to the installation of a toll-free support line in her home, followed by an appointment to the MSA Coalition board.

As a board member, Vera wears multiple hats, from fulfilling requests for memorial envelopes to mailing DVDs and printed information to assisting with the annual conference set-up, which is especially complicated given the special needs of attendees. When asked to name the most important aspect of the MSA Coalition, Vera says: “Everything. The research is fantastic, and grants have grown exponentially thanks to generous donations. The information we provide is absolutely essential to people who are dealing with this rare disease. The conferences enable patients and caregivers to form deep bonds with others they would otherwise never have met. All aspects of the MSA Coalition are important – this is full-spectrum support.”

Year-round, Vera answers hotline calls from patients, caregivers, hospices and physicians, an activity of which she never tires. “I get to be a lifeline, helping to take away fear with information,” she says. “Most first-time calls are from newly diagnosed patients or caregivers whose loved one has just been diagnosed. Then they call back whenever they need more information about equipment, speech therapy and what to do for this and that. What’s most common among the callers is the love that drives them to make things better and the determination to keep going. On a few occasions, the caller has been just really down at the moment and says, ‘You don’t know what it’s like.’ I assure them that I do know what it’s like, telling them, ‘I’ve been there’.”

To learn more about Multiple System Atrophy, the MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.

Support Vera’s fundraiser on CrowdRise! Please visit: https://www.crowdrise.com/MultipleSystemAtrophyCoalition/fundraiser/verajames

The Multiple System Atrophy Coalition Announces 2015 Annual Patient and Family Conference

by MSA Coalition | Sep 16, 2015 | MSA Coalition Press Releases

Seattle, WA – September 16, 2015: The Multiple System Atrophy Coalition invites MSA patients, their families and interested healthcare professionals to attend the MSA Coalition 2015 Annual Patient and Family Conference to be held Oct. 2-3 at the Airport Seattle Marriott in Seattle, Wash.

Beginning on Friday, Oct. 2 at 1 p.m. PT and running through Saturday, Oct. 3 at 5 p.m. PT, highlights will include presentations by expert neurologists familiar with MSA, discussion and demonstration of techniques and therapies aimed at improving the quality of day-to-day life. Attendees will also receive an update on the state of MSA research and participate in the always-anticipated patient and caregiver breakout sessions. In addition, this year, to mark World Multiple System Atrophy Day (Oct 3), a special celebration of light will take place during Friday evening’s welcome reception.

“Our annual conference is geared toward patients, care partners, and families who are dealing with MSA,” says Judy Biedenharn, RN, president of the MSA Coalition. “This year we have a great lineup of expert neurologists and other specialists from the field of autonomic and movement disorders who will address many issues related to daily life with MSA, including the best ways to manage symptoms. Our evening social hour and afternoon breakout sessions for patients and caregivers offer families the opportunity to meet other people and discuss problems and solutions. Knowing you are not alone and gaining insights from others about how to maintain a joyful life despite the struggles of the disease keeps many people coming back year after year.”

For more information or to register, please go to https://www.multiplesystematrophy.org/newsroom/annual-conference. Contact us by email (vjames@msacoalition.org) or call us toll-free via our support line (1-866-737-5999).

See you in Seattle!