You Don’t Know What You Don’t Know – Equipment For MSA

You Don’t Know What You Don’t Know – Equipment For MSA

By Michelle

When my husband was diagnosed with MSA eight years ago at age 52, we didn’t know what we didn’t know about equipment that makes the MSA journey easier. Since then, we have rented and purchased equipment that has been essential for helping improve my husband’s quality of life and my experience as a caregiver.

Two common challenges we have utilized equipment for are pressure sores and safe transfers.

Pressure sores are common in the advanced stages of MSA because an individual with MSA spends their day either in a wheelchair or bed and has difficulty repositioning. Therefore, it is essential to alleviate points of continuous friction to prevent pressure sores and inflammation and to heal them. Otherwise, there is the risk of infection, which creates other problems.

Being able to do safe transfers becomes more challenging as MSA progresses. Unfortunately, the only equipment Medicare covers for safe transfers is a Hoyer lift, which has its purpose but may not be the best solution for individuals who can bear weight and do not have severe hypotension upon standing.

For these individuals, equipment that enables them to safely transfer while not being completely immobilized is a better solution for their health and well-being according to medical professionals. Currently, we use a sit-to-stand lift. It’s great for my husband, and it’s easy to use for caregivers. A word of caution: Not all sit-to-stand lifts raise an individual to a standing position and/or fit through narrow bathroom doors. Rest assured; the two lifts included in the table below do both.

The table below includes challenges my husband has confronted and the equipment that we personally have found helpful in addressing each challenge. I encourage you to review the table from the vantage point of the present and the future. There may be equipment that can help you with a challenge you are facing now or may face in the future. I have identified the equipment covered by Medicare. To get this equipment, follow your health plan’s instructions. For non-Medicare covered equipment, shop around. If you don’t have Medicare, check your health plan’s Evidence of Coverage for durable medical equipment (DME) covered by the plan.

Please note that each example link is just for reference and/or personal preference of the author and is not a sponsored link. There are many different options available out there that may be preferred by patients for any reason.

MSA Challenges & Equipment Solutions

Challenge Equipment Example
Pressure sores
Bed *Low air loss mattress DermaFloat® APL
Heels while in bed *Prevalon heel protector boot Prevalon Heel Protector
Wheelchair *ROHO cushion ROHO Cushions
Elbows while in bed Soft pillow
Transfers
Positioning in a vehicle Swivel seat HealthSmart 360 Degree Swivel Seat Cushion
Safe assisted manual transfers Gait belt Elite Medical Instruments GAIT-M-Black Gait Transfer Belt
Safe assisted transfers for individuals who can bear weight Sit-to-stand lift Protekt® 500 Stand

Mini Compact Sit-to-Stand Lift

Safe standing transfers Transfer pole Security Pole
Showering in a bathtub Swivel tub transfer seat Carousel Sliding Transfer Bench with Swivel Seat
Other
Blood pressure regulation

Swallowing

Swollen feet & legs

*Hospital bed Delta® Ultra- Light 1000, Semi-Electric Bed
Breath support

Lung infections

Incentive Spirometer

How to Use Your Incentive Spirometer

Incentive Spirometer

Door clearance for wheelchair and/or lift Offset hinges Generic 3.5 inch Swing Clear Offset Door Hinge
Lung health

Aerobika Oscillating Positive Expiratory Pressure Therapy System

The AEROBIKA® OPEP Advantage
Posture in a wheelchair *ROHO cushion ROHO Cushions
Power failure Battery back up APC UPS 1500VA Battery Backup Surge Protector
Stridor *CPAP CPAP Machine
Toilet hygiene Bidet Bio Bidet USPA 6800U Bidet Seat
Walking independently safely *U-step walker U-STEP Neuro

*Covered by Medicare. See Medicare.gov for a full list of Durable Medical Equipment (DME) coverage: https://www.medicare.gov/coverage/durable-medical-equipment-dme-coverage

Sharing Your Journey

Sharing Your Journey

By Cathy Chapman, Former Patient Representative for The MSA Coalition

Several years ago, I began journaling my experiences with MSA, beginning with my diagnosis, and continuing with how it impacted my life, what was most important to me, my favorite verses, and what I’m thankful for. This was helpful for me to put things in perspective and to share my experiences.

I have found it to be therapeutic to put into words how I am feeling at any point in time and to be able to look back on all of it later on. Everyone has their own way of coping with their feelings, but this is one thing that I have personally found to be helpful.

We are all on the same path, but our individual journeys are all different. Each of you have your own experience with your disease progression, how you cope, what makes things easier for your, the important people in your life, and anything that is important to you. You can choose to journal or share any of this or none of this in any way that you choose. It is your story, and you have the right to share it and experience it on your own terms.

It is my privilege to share parts of my personal story with all of you with the help of the MSA Coalition. I hope that it is helpful to listen to my story and the stories of others who chose to share theirs, and I hope that it helps make you feel less alone in your journey. It takes strength to live with illness, but it also takes strength to share your story of that illness.

If you feel like it would be helpful to you to write down your experiences either just for yourself in a journal or to share with others, I encourage you to do so. If you feel moved to do so, the MSA-Coalition is always seeking submissions for patient stories to share via blog posts, on the website, and through email. We all have a unique story to tell, but there are common threads linking all of us, and there may be something in your story that resonates with and helps someone else in their journey.

None of use chose to be on this particular, often difficult journey. But it is the support, encouragement, and understanding that we gain from each other, with the stories of your journey that teaches us that we are not alone.

Thank You, Carol Langer, for 10 Years of Service to The MSA Coalition

Thank You, Carol Langer, for 10 Years of Service to The MSA Coalition

Join us in saying a fond farewell to MSA Coalition Board Treasurer, Carol Langer. As her ten-year tenure on our board of directors comes to a close this year, we want to reflect on all she has done for our organization and the MSA community.

Carol with her husband Rob, who was diagnosed with MSA in 1998

An active member of this community for over twenty years, Carol joined The MSA Coalition board in 2013 bringing her executive level leadership skills and accounting background to the role of Treasurer. Professionally, Carol trained as a CPA who first worked in public accounting and later rose to become a senior financial executive for technology companies until she retired in 2000 to care for her husband Rob who was diagnosed with multiple system atrophy in 1998.

Upon her appointment as Treasurer, Carol went to work immediately to implement improvements to the MSA Coalition’s accounting procedures and remained laser focused on ensuring financial stability and transparency of the organization. Carol prepared annual budgets and kept a close eye on expenses while supporting the steady expansion of the MSA Coalition’s programs in support, education, research and advocacy.

As our organization adopted online fundraising, Carol made sure we were properly registered in all required states. Under her direction, annual external audits were arranged, further strengthening the MSA Coalition’s reputation for sound financial management. Indeed, her attention to detail and firm commitment to transparency have helped the Coalition earn the highest recognition for excellence from charity watchdog organizations, most notably being a Four-Star rating from Charity Navigator.

Carol’s remarkable ability to manage our financial affairs helped with the steady growth of the MSA Coalition. When the time came for us to move to the next level of hiring resources to carry out day-to-day operations that were being handled by a few volunteers, Carol worked hard to find the best alternatives to professionally staff the organization. Her efforts led us to contract this work to a management company, which helps ensure our organization will remain sustainable for many years to come and be able to deliver the kind of excellence our MSA community deserves.

“As Carol concludes her role as Treasurer for the MSA Coalition, I extend my sincere appreciation for all she has done,” shares Cyndi Roemer, Chair of The MSA Coalition. “Her commitment to this organization and the community has surpassed her role as treasurer. During her time on the Board, Carol has actively contributed to the growth of the organization through our important work on policy development, her financial guidance, and her service on many committees including strategic planning, research, and support services. But even more notably, Carol has shared her knowledge and experience as a care partner to support others as their loved ones battle MSA. She has presented at conferences, facilitated support groups, interacted on social media, and connected with the community significantly to provide the support so desperately needed when living with a rare disease. She was always ready to help and though she is leaving her role on the Board, I know she will stay connected and committed to this community. Many thanks to Carol, for her time, passion, and commitment.”

Carol represented the MSA Coalition at many scientific conferences including the Global MSA Roadmap Meeting, American Academy of Neurology, American Autonomic Society and International MSA Congress. She was also invited to represent the MSA Coalition as a member of the Neurogenic Orthostatic Hypotension Advocacy Working Group where she served for several years. At our annual conference, Carol often led the care partner breakout sessions and her presentation known as “It Takes a Village” was so popular that she was asked to repeat it several times as well as to record it for future viewers.

Carol at the American Academy of Neurology Congress 2017 – with Dr. Jerome Lisk

Carol at the American Autonomic Society Congress 2019 – presenting the Don Summers Memorial Travel Award

Carol at the Neurogenic Orthostatic Hypotension (NOH) Advocates Working Group Meeting 2018

 

Carol appearing on the WWLP TV show “Mass Appeal” in 2016 along with MSA patient Pam Maheu.

Pam Bower, Vice Chair of the Coalition reflects on meeting Carol for the first time many years ago. “Carol was actually a member of the MSA community for many years prior to her board service. I first got to know Carol when she joined an online support group for MSA not long after her husband Rob was diagnosed in 1998. As a member of that group, Carol took a great interest in helping MSA patients and their care partners find needed resources and support. She started an in-person support group in Boston and facilitated a monthly care partner webinar for over 10 years. She also gave interviews to local TV networks to raise awareness of the disease. Many times, Carol was there alongside MSA families to personally accompany them at doctor’s appointments to help explain the disease. I greatly admire Carol for her leadership skills and strong work ethic but most of all for her deep compassion for others. I will certainly miss working alongside her on the board but our friendship will continue for a lifetime”.

Carol lives in Boston with her beloved cat Keiko and spends her summers enjoying the beach and entertaining family and friends at her home on Nantucket. She is an avid fan of live theater and serves as a trustee of the Huntington Theatre Company. She also serves as Chair of the Neuroscience Advisory Committee for Beth Isreal Deaconess Medical Center. Carol has an A.B. from Boston University in English Language and Literature and an M.S. from Northeastern University in Accounting.

Our organization owes Carol a huge debt of gratitude that we will continue to pay by dedicating our work to bettering the lives of MSA patients and their families and building hope for the future. Carol, we cannot express our thanks to you enough for all you have done for the MSA community. We wish you all the best in this next phase of your life.

A Brief Message from Carol Langer:

I will be leaving the board of directors at the end of December after 10 years of service. As I reflect on my time with the MSA Coalition, I am filled with gratitude for the opportunity to give back to the amazing community that helped my late husband Rob and me navigate our journey with MSA. I am honored to have worked with a dedicated team that has accomplished so much, from funding over $3 million in research to holding successful patient and care partner conferences that educate, provide emotional support, and help build community. In my role as treasurer, I am also proud that we have built a financially stable organization that will carry our mission forward in the coming years and help the MSA Coalition accomplish even more.


Watch the presentation “IT TAKES A VILLAGE”: A description of Carol’s personal journey through multiple system atrophy with her husband, and how they built their care team and includes guidance on interaction with friends, family and professionals and links to many different helpful resources.

Honor Carol With A Donation to Her MSA Coalition Facebook Fundraiser

Or Donate With A Check by Mail:

The MSA Coalition
7918 Jones Branch Drive, Suite 300
McLean, VA 22102

You Don’t Know What You Don’t Know – Equipment For MSA

Caring for My Mom

By Marlies Opstoel

My name is Marlies, and I am 27 years old living in Belgium. Three years ago, I lost my mom Trui Derycke, age 55, to MSA. She had been diagnosed with Parkinson’s disease in 2014 and was later, after many doctors appointments, diagnosed with MSA.

It had been a rough couple of years, watching her getting worse and worse. It started with not being able to write anymore and resulted in not being able to walk anymore, not being able to eat anymore and the worst was her not being able to talk anymore. We took care of her at home for as long as we could. We adapted our house (with money my sisters and my friends and I raised by organizing a benefit); we had medical caregivers at home; and we kept communicating with her by using a paper on which the alphabet was written so that she could slowly form sentences. She never complained. She still enjoyed life even if her world was getting smaller and smaller each day.

Later, in June of 2019, she started having trouble with her breathing, so she needed an oxygen machine. It kept getting worse and her illness was progressing really quickly. She always kept pushing her boundaries, but she started feeling like she didn’t have many boundaries left she could keep pushing. She always looked back at how far she had come, but this time, she looked at her future and told us she didn’t see a future anymore.

That’s when she decided she wanted euthanasia. It was a heartbreaking choice, but we respected her choice. It was her life, her world, that was getting too small. We knew we only had one month left with her so for the whole month, we did everything we could. For that last month, she stayed at a palliative care unit where the nurses were so kind, so amazing. We were there with her 24/7, even slept in her room on our inflatable sleeping mats. We gave her everything she wanted, like getting her favorite food and drinks, playing her favorite music. She still enjoyed everything until the last minute. She still had a big smile on her face.

Sadly, on August 2, 2019, she had her euthanasia and so she passed away. She also donated her brain for research, hoping it can someday help others who are suffering from the same awful disease.

She was so full of life and never ever gave up. She kept pushing her boundaries, and I will always admire her for that. And I really do hope that I have some of her strength in me.

My love goes out to anyone suffering from MSA and their families.


Euthanasia or Death with Dignity is only available in a select few U.S. states, and The MSA Coalition seeks to share experiences like this with the MSA community to provide options. We encourage our community members to discuss all options with a healthcare team, family, and close friends before making a decision. Find more resources on medical aid in dying here.

Sharing Your Journey

Planning for the Holidays

By Cathy Chapman, MSA Coalition Patient Representative

Holidays can be very difficult and emotional for many people. It brings to the forefront all of the things we can no longer do that made past traditions so special for ourselves and for our family and friends. There are a few things you can do to help make this season a happy one.

Reflect on Special Moments

Reflecting on memories of the past and what meant the most to you may help to clarify what you want from this holiday.

  • What am I most grateful for?
  • What is most meaningful?
  • Loved ones in your life?

The answer to these questions can set the stage for how you wish to spend your holiday.

Communicate with Family and Friends

Talk with family and friends in advance about a plan that will also include your needs, in needing to rest, what you can eat and how much time you are physically able to participate in.

Be Proactive in Caring for Yourself

  • Be mindful of limitations (you know best)
  • Rest before and after planned festivities
  • Be mindful of how you are feeling
  • Ask for help. Family and friends want to help. This is a gift to them.
  • Break up the festivities to allow for periods of rest so not to get over fatigued
  • Use a wheelchair to conserve energy
  • Stay hydrated

No Apology Necessary

It is very easy to apologize for having to decline an invitation, canceling at the last moment, coming late, leaving early from a gathering, or excusing yourself to take needed rest. Instead of saying “I’m sorry,” say “thank you for understanding.” Your illness is not your fault.

Plan for Staying Connected When You Can’t Be At An Event

One way to stay connected with your loved ones or friends that will be attending the event that you are unable to attend is having them take pictures or videos to share with you.
If you are not able to be with family and friends, a planned phone call or FaceTime with them can change what could have been a difficult day to one of joy and gratitude.

Make Your Surroundings Extra Special

Having to stay indoors is very isolating but I’ve found that by decorating with my most cherished decorations, having a cup of hot cocoa, watching classic holiday movies, reading a favorite book, listening to my favorite music or audiobook brings me comfort and enjoyment.

However you choose to spend your holiday, I wish you joy, peace and cherished memories.