For Care Partners
The care of our loved ones living with MSA falls to their devoted care partners. Unlike other diseases, there is not a clear path and rarely a single health provider to guide your way. This page offers resources to support you in your caregiving journey, including educational materials and advice from care partners.
Articles & Blogs
Expanding awareness of MSA is important, and so is expanding awareness of your personal reality. As care partners, we often feel that we, alone, need to take on all the responsibilities for meeting our loved one’s needs. It’s easy to become isolated, particularly as the disease progresses. This blog includes practical advice on how to expand awareness of your situation and offers tips to start the conversation.
MSA Coalition Board Member Larry Kellerman teamed up with Biohaven to present information from a survey of anonymous MSA patients and care partners. Some advice emerged that might be helpful to other patients and care partners on their MSA journey. The purpose of this review is not to provide any medical or health-related advice, but rather to share lifestyle tips for those affected by MSA.
Cory Hutchinson discusses the importance of having a plan when it comes to paying for a care partner, paying for medication, trips to the doctor, etc. Cory explains that there are resources available, but they take time to access, so it’s important to plan early to allow yourself more time for what’s important – spending time with your loved one.
The universal question, “What should we eat?” can be harder to answer when you are a care partner for someone with multiple system atrophy (MSA). How can we have a good and nutritious meal that everyone in the family can enjoy, given the challenges patients have with dysphagia (difficulty swallowing) and care partners have with time?
Hospitals are difficult places for MSA patients. It seems counterintuitive, but even highly trained medical staff in a top facility will have little to no experience with MSA. And there you are … with your loved one who has an acute medical problem or even a life-threatening emergency. The good news is that you can help navigate the situation … if you are prepared. Read some useful resources to plan ahead.
Caring for a terminally ill patient is difficult no matter the disease. In the case of MSA, a relentless and devastating disease, caregiving is 24/7 during the last months of life. Support both emotionally and medically becomes so important to the health of both the patient and the care partner. Hospice care can be an integral part of that support. With a goal of “best quality of life possible” hospice can help attain it.
There are two primary reasons to arrange to donate a multiple system atrophy patient’s brain. One is to confirm the diagnosis, and the other is to assist researchers in finding a cause, and ultimately a cure, for multiple system atrophy. Learn more.
- CurePSP’s Carepartner Guidebook
- MSA Trust: Carer’s Guide
- NORD: Rare Caregiver Respite Program
- “Eight Tips to Managing Caregiver Guilt” from Today’s Caregiver magazine
- NIH Multiple System Atrophy Fact Sheet (printable)
Webinars, Video & Classes
During Multiple System Atrophy Awareness Month 2021, the MSA Coalition conducted a panel discussion with MSA care partners. Learn how others have helped loved ones with MSA, how they coped in their roles as care partners, what resources they found helpful, and lessons learned along the way.
Carol Langer, Board Treasurer, MSA Coalition, shares her personal journey through multiple system atrophy with her husband, and how they built their care team. Carol offers guidance on interaction with friends, family and professionals, and links to many different helpful resources.
The Family Caregiver Alliance a division of the National Center on Caregiving, has a useful series of eight videos called Caregiver College, geared to everyday tasks that caregivers face.
Powerful Tools for Caregivers classes help caregivers take better care of themselves while caring for a friend or relative.
MSA can make you feel isolated. We invite you to participate in an MSA support group in your area. Support groups offers patients and their care partners a forum to interact with others dealing with the same challenging disease. Get practical advice, find support, and know that you are not alone.