Expanding awareness of MSA is important, so is expanding awareness of your personal reality.
As caregivers, 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. And isolation will not help you live your best lives. We probably can do it alone, but we shouldn’t.
This month, consider making a commitment to expanding awareness of your situation.
The National Caregivers Library has an excellent resource related to this topic. While it is written for families dealing with cancer, most of the tips are applicable to MSA. This article points out, “At a time when each of us who is trying to cope with [MSA] is in need of mutual support, we should not shut each other out. Through sharing we can build foundations of mutual understanding to sustain us through the long period ahead.”
Some tips to start the conversation:
- Start out by sharing news of the diagnosis. There is nothing shameful or even horrible about this. It’s simply a truth.
- Let people know what Multiple System Atrophy is. Send them to the MSA Coalition Website or print out a simple description of the disease.
- Then communicate regularly with family, friends, and community members about your current realities. Not everyone will “step up.” Let go of those who, for their own issues, can’t be there for you. And be open to the unexpected folks who do show up. You may be surprised.
So, then what? Even good-intentioned people may not know what to do. They want to help but simply don’t know how.
- Make it easier for them (and you). The MSA Coalition has a new resource to help with this. “How to Support a Loved One with MSA and Their Family: A Few Suggestions for Family and Friends” offers specific suggestions for the people in your life. Consider sharing this resource with your community.
It’s true that caring for someone with MSA “takes a village.” Let your village in on your truth. Your lives will be enriched.
Contributed by Elaine Douglas, Caregiver Representative, The MSA Coalition Board of Directors
I am the husband taking care of my wife who has Msa-c. Started 2018, noticed slowness and balance problems. Speaking slower and can’t walk without a walker. Who can I talk about my wife and support line? I am also disabled and have diabetes. Thanks
Sorry to hear that your wife is facing this disease. Please call the MSA Coalition support line 866-737-5999. You can also email LKellerman@msacoalition.org