ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

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For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
5808 Dawley Drive
Fitchburg, WI 53711‑7209

ALS Worldwide
January 18, 2017

Living With ALS/MND In England

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.