Robin's Last Trip East

Friends,

This is a hard story to write and one we think is important to tell. Our friend Robin has a disease called Multiple System Atrophy (MSA), specifically, MSA-C, the "C" stands for cerebellar.

It's taken years to land at a now undisputed diagnosis. Years of a life that is coming to an end. Life expectancy of MSA-C is 3-7 years; Robin has most likely had it for at least 4 years but probably longer.

We are writing for two reasons:

1. Robin and Rob think it's time to tell you what's happening, what isn't obvious from photos they share (you don't see the wheelchair, or the difficulty walking, or hear the slurred speech in the photos).

2. Robin would like to take a last trip to the East Coast, where she lived for over 30 years, to visit her kids, her friends, and say goodbye. They are not in a position to fund a last trip (tickets, places to stay that work with Robin's current state of disabilty, pet care), nor ensure they can handle the bills upon their return, especially as it means Rob, who is self-employed, will work even less during that time. 

So, we're sharing, with permission, and reaching out to help this last trip happen. It's awkward to ask for money. It's hard to talk about our living friend who is dying. But we're doing it anyway.


Robin's Diagnosis: MSA-C
Multiple System Atrophy is a degenerative neurological disorder that attacks the autonomic system, that part of our brains that causes certain bodily systems to function automatically (digestion, breathing, heart regulation, the body’s ability to monitor temperature, swallowing, etc. ).

Robin's autonomic system is now compromised. This is a dire problem that gets worse and can at any point cause a heart attack, a major fall, various problems related to breathing and swallowing, and other functions many of us, thankfully, don't  need to think or worry about.  So the reality that Robin's time left is uncertain but could be extremely short. 

The good news, in such a difficult reality, is that the disease does not affect Robin's ability to think clearly and it is not painful. It has, however, greatly impacted Robin's ability to speak clearly and Robin's biggest fear is losing her voice. We hope that bridge doesn't get crossed, but it may. 

At this point Robin requires a wheelchair but does not have the strength to push it herself. She needs help with everything from the time she wakes up until she goes to sleep. As a result, over time, her partner, Rob, has gone from working and making a good income, to slowly becoming a full time caregiver, meaning that her work and ability to make money to support them has drastically changed. Robin has an in-home caregiver 24-hrs  a week but the rest of the week Rob takes care of Robin. The state of California has provided some help but they still struggle a lot financially. We don't have to tell you about the problem of healthcare in the U.S. 

Robin moved back to L.A. where she grew up, when she found out how dire her condition was. She needed to get away from East Coast winters and wanted to be near her mother and extended family. When she and Rob moved, neither realized how quickly Robin would deteriorate, nor how little time she had left.

She would like to visit her children before it's too late, and to see her friends, and her beloved NYC one last time and so we are reaching out. 

Both Robin and Rob find it very difficult to ask for help. They are embarrassed but very grateful to have friends and family who care about them. They appreciate your love and hope to see as many of you East Coasters as they can if they are able to make this trip. Their goal is October.  

Thank you for your love and support. Feel free to reach out to one of us, if you'd like to discuss. We can also put you in touch with Rob and Robin (Robin can't really post on Facebook anymore, it's very hard for her to type or write) but she does see posts.

With much appreciation and love,

Jenny and Jan



Jenny and Robin 

Robin and Jan

Robin and Jan in the way back time machine


Rob and Robin