Hi, I am Marlies Rommelse, 61 years old, and happily married to Merlin. We live in the Netherlands and have a daughter (28) and a son (26). I retired six years ago, after a 30-year career as a physician, with the last seven years as manager in a rehabilitation center. My husband was already retired, and we planned to travel to faraway destinations.
In September 2012, I tripped, and after this little accident, noticed that I was no longer able to lift my left big toe. I didn’t worry about this too much, but in April 2013, I had problems getting on my bike and decided to visit a neurologist. My walking deteriorated, and climbing stairs started to become very difficult. In August 2014, I was sent to the ALS center of the teaching hospital in Utrecht. After one day of investigation and a muscle biopsy, they told me I had ALS.
In the summer of 2015, lifting my arms became more difficult. I was pushed in a wheelchair for longer distances outside, but could still drive in my car. I started to use the electric wheelchair in April 2016; at the same time, I started to use robotic arms, which help me lift my arms with less effort. Swallowing steak became difficult in December 2015, and I started to have difficulties eating other types of food in 2016. In August 2016, I had a gastro tube (PEG) implanted. One week later, my medical team discovered a pulmonary embolism. This was three weeks after I was no longer able to walk a step.
From that moment, all my transfers have been made by a lift and professional caretakers began visiting my home four times a day. Since November, I can no longer rotate my forearm, making it impossible to lift food to my mouth on a spoon. In December 2016, I started using the iEat, a robot that helps feed me, giving me the possibility to eat independently. If you are interested in learning more about the feeding robot, please visit www.assistive-innovations.com.
My husband is wonderful. He does everything to make my life as comfortable as possible. My children and their partners visit frequently, and they call every other day. Our brothers and their wives visit very regularly and are prepared to take care of me, when my husband wants a day off. We have dear cousins, friends, and neighbors who call, visit, Skype, and send emails and apps. Medical assistance is given by the rehabilitation center where I worked for seven years. The occupational therapists are especially important.
I came into contact with ALS Worldwide and had a Skype conversation with Co-Executive Director Barbara Byer, who is very understanding and warm. I was even more impressed by how quickly Barbara arranged for the pharmacy to ship much needed prescriptions to our home. ALS Worldwide has much knowledge and understanding of ALS. They don't push you in any direction; they give information and help.