Caregiver advice: Marburg MS
I have written extensively about my experiences as a caregiver for my late fiancee. Since then, I have become a professional caregiver. I find this to be very personally rewarding, and love what I do. I seem to have a particular affinity for Parkinson's clients, but recently I have accepted a client with Marburg MS. She is 28 years old and was diagnosed four months ago. During my first meeting with her neurologist, I was told she may only have another six months at the most. She is already confined to a bed, and needs help with all activities. I am familiar with this, but would like some advice from anyone familiar with Marburg's on what I might need to know. She is still very mentally sharp, and is a joy to be around.
I would greatly appreciate any help on this.
Hi @teddys. What a wonderfully rewarding career! It is good to see someone like you going into this field given how well you cared for your fiancée and all the empathy and knowledge you have gained over time. Unfortunately, we do not have much information on Marburg's MS. It is rare and progresses so rapidly that we don't see many people here who have it or are caregivers for people who have it. My heart goes out to your client. What a terrible diagnosis at such a young age. Please know we are here though to help you and support you as you care for this young woman. Warmest of wishes! - Lori (Team Member)
Thanks Lori. From time to time I see on this site comments like "at least MS is not fatal". Well, from personal experience I know this is not true. And the Marburg variant, though extremely rare, is a death sentence. The young lady I care for is the same age as my son. She lives with her mom, who is my age, so, even though I have only been caring for her for a month, she is like a daughter to me. It is very difficult to be with her and know she will die soon.
Multiple Sclerosis is a terrible disease, whether you suffer from it or care for someone who does.
