My name is Sade Milton and I am 45 years old. I live in Cambridge, England with my husband John and our daughters, ten-year-old Lara and four-year-old Emily. In July 2016, I was diagnosed with motor neurone disease (MND), known as amyotrophic lateral sclerosis (ALS) in the USA. My symptoms started in November 2015 after a really bad cold and persistent cough. I initially lost my voice and then it became husky. By December, I started sounding slurred. I was later diagnosed with MND/ALS bulbar onset. In addition to my speech impediment, I have chewing and swallowing issues. My hands are also now affected.
Before developing MND/ALS, I was a very active person with a challenging full time job in IT and being a mum to my girls. I also had a busy social life and loved traveling. I enjoyed physical activities, like going to the gym, walking, hiking, and running. I used to train for, and take part in, two half marathons every year. In fact, even after my symptoms first started, I was still able to run in the Cambridge half marathon in February 2016 in under two hours. In earlier years, I even walked around and to the top of Mount Snowdon several times.
Now just over a year since my symptoms first started, I’m extremely fatigued, can no longer speak on the phone, and have to repeat myself several times to be understood. I can still eat if I chew slowly, but I’m prone to choking when drinking and eating some food. Everything takes a big effort—showering, dressing, and even feeding myself. I miss being able to cook for my family and I have had to deal with not being able to run again. The loss of my voice was the first and the hardest thing for me to deal with; anyone that knows me will tell you that I had a lovely singing voice. I used to sing in the church choir and always hoped to return to singing one day. With my speech heavily affected and my hands now very weak, I feel like my ability to communicate is slowly slipping away from me.
Before I got in touch with ALS Worldwide, it was very difficult to get through the day. I had no energy and felt very weak. I had heard a lot of positive things about the nonprofit organization and I was even more impressed when I went on to their website. I was very encouraged by what I read online and was eager to get in touch, which I did by email. I was also pleasantly surprised to get a quick response from Barbara Byer. After completing an online profile on the website, I was able to arrange a Skype call with her the following week.
During the Skype call, Barbara explained ALS Worldwide’s mission and approach and how they could help me. I was very impressed with how ALS Worldwide helps patients. While I know there is no cure, I felt a glimpse of hope during our chat. We agreed that I could benefit from taking Methylcobalamin (B12) injections and Nuedexta to begin with and explore other options in the future. I was even more impressed by how quickly Barbara arranged for the pharmacy to ship everything to the UK. Since I’ve been taking B12 injections and Nuedexta, I feel stronger, I can do more, I no longer laugh inappropriately and my speech has improved. I am so grateful to Barbara and ALS Worldwide for making this possible. Now my ALS is just a little bit more bearable.