Learning together.

For more than 25 years I experienced episodes of weakness, shortness of breath, and dizziness. My primary care doctors ordered a full cardiac investigation each time I went to see him or her because my father had died from a heart attack when he was 45. My tests were always negative. Then I developed trouble with my vision, and the weakness got worse and did not resolve. My balance was bad—I kept falling off my bicycle. I saw various specialists and had a magnetic resonance image scan. A diagnosis of multiple sclerosis was made. The neurologist I then saw said that I had had remitting relapsing multiple sclerosis for more than 20 years, and now I had secondary progressive multiple sclerosis. I thought that my life was over. I had worked as a nurse in physical rehabilitation and had seen multiple sclerosis at its worst. I was afraid I wouldn’t be able to continue the work I loved, leading the patient and family experience initiative at Boston Children’s Hospital. “Let’s travel on this journey together”