Welcome to Ed's CaringBridge website. We are using it to keep family and friends updated in one place.
Ed was diagnosed with ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease) approximately one year ago. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Symptoms and progression of the disease varies from person to person. We learned that military veterans are TWICE as likely to develop ALS as those that have not served in the military. Ed was in the Army Reserves 325th Army Nurses Corps and retired as a Major after 21 years.
Ed began noticing symptoms prior to diagnosis including weakness in his arms as well as muscle twitches or spasms. He also experienced significant unexplained weight loss. As the disease has progressed he has lost more of his abilities to move his upper extremities making it difficult to grasp or manipulate objects. His breathing also became gravely affected. The respiratory therapist has told us that it is not his lungs' ability to take in oxygen that is the problem, it is the weakness of his diaphragm that has difficulty forcing the carbon dioxide out. He began using a non-invasive respirator when sleeping. He was able to drive to Baltimore to visit his son, Joe, last October and took a trip with his daughter, Sarah, and his grandchildren, Quincy (age 7) and Penelope (age 5), to Branson in December. Shortly after that he stopped being able to drive and received a motorized wheelchair with all the bells and whistles. Marsha and Ed also acquired a new van with an automatic ramp to accommodate this wheelchair.
Over the summer he enjoyed visiting with his grandchildren and he also took a trip to Michigan in May to see extended family. Over the past several months he has continued to lose control over his muscles including his lower limbs. Walking has become very difficult and he is only able to transfer to a wheelchair at this time. He is starting to wear his ventilator more often during the day. Although he still enjoys eating and does not have any difficulty with swallowing, he received a PEG tube for feeding over the summer. He has not been able to maintain his weight through normal eating.
Most recently, the family made the difficult decision to begin hospice care in order to provide more supports for Ed and Marsha. At this time, Ed is primarily spending most of his time in bed, though we hope he can continue to go for walks around the neighborhood in his motorized wheelchair with some assistance. He has enjoyed recent visits from out of towners including his brother, Don, his sister and brother-in-law, Mary and Dale, and his son, Joe.
As many of you know, Ed was previously in charge of taking care of many of the household responsibilities due to many of Marsha's physical limitations. As you can imagine this has been a very difficult switching of roles within their household and marriage. They will be receiving some care assistance starting 3 times a week outside of the hospice staff visits.
Ed and Marsha would appreciate visits from friends. Meals/meal prep and errands are also a need that they have. Please text Marsha or Sarah when planning a visit. This is a very overwhelming time for the family and there may be days with "too much" help and other days with not enough. In addition, please be aware that donations to Caring Bridge do not go to the family.
We appreciate your support and words of hope and encouragement. Thank you for visiting.
For more information on ALS visit the ALS Association website:
https://www.als.org/understanding-als/what-is-als 
