A Man With ALS Says “I Love You” to His Wife for the First Time in 15 Years

“I love you Lorraine.”

These were the first words spoken by Don Moir in 15 years. Don was diagnosed with ALS in 1995, and has been living with this debilitating disease ever since then. In 1999, Don was outfitted with a ventilator, which took away his ability to speak. Ever since then, he has been unable to speak, and has used a simple letter board as his way to communicate with his family.

After years of taking care of Don, Lorraine heard an interview with Mick Ebeling, the founder of Not Impossible Labs. Mick was discussing an invention known as the Eyewriter. The Eyewriter is a device that is similar to glasses, but enables people who can’t move to speak, by simply moving their eyes.

Javed Gangjee, a volunteer and engineer for Not Impossible Labs, worked with Don for over a year in an attempt to restore Don’s ability to speak. Since Don had never used a computer before, this was a difficult process. Javed then started using Don’s letter board and was able to create a program that Don was able to use.

When they had Don use the technology for the first time, Don’s simple message was “I love you Lorraine.”

For more information on Don and his journey, see video

 

New ALS Facebook Groups for Patients and Family/Caregivers

ALS Crowd is happy to announce two new Facebook groups for the ALS community with the goal of connecting patients and family/caregivers with one another to help share critical information.

The first is a Facebook Group specifically for ALS patients and is a great place to share strategies, treatments and tips, find doctor recommendations and ask questions of other patients. Join the ALS Crowd Patient Group.

Then we have a new Facebook group just for family members and caregivers for multiple myeloma patients and survivors. Concerned family members and caregivers are critical to an ALS patient’s success and survival. You can help us research important topics, ask the right questions in the clinic, organize our medications and provide the physical and emotional support we need to get through challenges. This important group can help share treatment options, discuss relevant ALS research, give recommendations about doctors to see, and describe coping strategies for both patients and caregivers. Join the ALS Crowd Family/Caregiver Group.

Please share this post TODAY with your Facebook family, caregivers and friends, and let’s collaborate to help find new treatments and a cure for ALS!

Our First Show with ALS Expert Dr. Merit Cudkowicz, MD, MSc

Thursday, June 26, 2014
2 pm PDT, 3 pm MDT, 4 CDT, 5 pm EDT

Call in to (516) 590-0362 to listen by phone and ask questions or

What is the latest in ALS therapy and innovation? ALS expert Dr. Merit Cudkowicz, MD, MSc of Massachusetts General Hospital will join us for our very first ALS Crowd show to give patients an update on the very latest research and findings for ALS patients. This new series is created to connect ALS patients with the ALS research community, to educate and empower them to make educated choices about their care. Listen in to this important and inagural show.

Dr. Merit Cudkowicz, MD, MSc, is the Chief of the Neurology Service, Director of the Amyotrophic Lateral Sclerosis Clinic and Co-Director of the Neuromuscular Division at Massachusetts General Hospital. She is the Julianne Dorn Professor of Neurology at Massachusetts General Hospital, at Harvard Medical School. Dr. Cudkowicz completed medical training at the Health Science and Technology program of Harvard Medical School, and she was a resident in Neurology at MGH. She obtained a Master’s degree in Clinical Epidemiology from the Harvard School of Public Health.

Dr. Cudkowicz’s research and clinical activities are dedicated to the study and treatment of patients with neurodegenerative disorders, in particular amyotrophic lateral sclerosis (ALS). Dr. Cudkowicz directs the MGH ALS clinic and the Neurology Clinical Trials Unit .  She is one of the founders and co-directors of the Northeast ALS Consortium (NEALS), a group of 92 clinical sites in the United States and Canada dedicated to performing collaborative academic led clinical trials in ALS.  In conjunction with the NEALS consortium, she planned and completed 7 multi-center clinical trials in ALS and is currently leading three new trials in ALS. Dr. Cudkowicz received the American Academy of Neurology 2009 Sheila Essay ALS award.  She is actively mentoring young neurologists in clinical investigation. Dr. Cudkowicz is on the Research Council of the American Acadenmy of Neurology and the medical advisory boards for the Muscular Dystrophy Association.