By Kathleen Shada
First, I want to gratefully acknowledge my privilege. Thanks to my parents and family, I‘ve never wanted for anything. Also, I’ve been very lucky to have caring friends who have supported me in various ways during this journey.
My MSA journey started a couple of years prior to my diagnosis in 2017. I was spontaneously falling, or so I thought, but I knew something was not right. So, I mentioned the falls anytime I consulted a physician. They did nothing until I requested assignment to a Kaiser physician that my friend recommended. By that time, I was falling about every other month. Thankfully, he acted on my concerns and ordered an MRI and neurologist referral.
I was working as a resident service coordinator. My primary responsibility was connecting people who were older and/or had a disability with community resources and benefits to help them maintain their independence and affordable housing. Through my community connections, I heard about a neurologist within Kaiser who was a Parkinson’s specialist and physician educator. I advocated for a transfer from a very good movement specialist to her. She diagnosed me with MSA and said I needed to “get my affairs in order.” The neurologist said to tell her when I decided to quit my job. Then she referred me to a social worker recently assigned to her unit. The social worker’s expertise and focus was addressing the needs of people with movement disorders. She educated me about benefits and community resources. She also reassured me that I would have an income when I quit working. It reinforced my education and experience of how critical it is to provide a bridge for people, especially those who are newly diagnosed, to a community and benefits expert. From my support groups and my experiences in northern California, I’ve learned how rare it is to have a proactive and supportive neurologist and staff.
On July 2, 2018, my neurologist reiterated her offer to help me through the benefits process when I decided to quit my job. At the time, I was at a very low point. I was experiencing visual hallucinations and extreme fatigue. The next day, I decided I was too tired to go to work. I told my employer that I was going out on disability. My employer didn’t take the news well and fired me before I could get my neurologist’s letter to them.
Lesson learned: do not make important, rash decisions when I am not feeling well. That lesson I apply whether I am taking a step or making a decision. I also learned that I need to acknowledge my limitations rather than what I thought was being strong and “grinning and bearing it.” It does not benefit me nor the people who I am trying to protect or not bother.
That leads to another lesson: asking for help. There are kind people in this world. I sincerely wish you to experience more kindness. Even strangers can be more kind, thoughtful and generous with their time than family are able. I thought I was being independent and strong not asking for help. I’ve learned to be vulnerable and to reach out. It is still very difficult. I realized people will tell me whether I’m expecting too much. I’ve also gotten to know my neighbors who have offered to lend a hand so I could stay independent.
And finally, I’ve learned to use my skills as resident service coordinator to seek and find wonderful people and community resources to enable my autonomy.