Helen Busuttil Regenbogen was diagnosed with Hypertrophic Olivary Degeneration (HOD) in 2019. The night before a routine bladder cancer checkup she felt very unwell, she had trouble walking and was stuck in her bed. At the checkup, her doctor ran a chest X-ray which determined she had aspiration pneumonia. She was then admitted to the hospital. While in the hospital, she had a stroke that caused HOD along with Ataxia, imbalance, as well as swallowing and speech defects. While still in the hospital, she was ogled by multiple doctors, as none of them had ever heard of or seen HOD before.

Soon after her diagnosis, she started to fall constantly, always backward onto her head. Now she uses a motorized wheelchair, that she describes as a tank. The wheelchair is so large her husband, Adam, had to take their bedroom door off. Even with the door off, she still runs into the door frame! Helen would prefer a smaller wheelchair, but can’t use a non-motorized wheelchair very often because of her arthritis. She has also been in speech and physical therapy because of her HOD symptoms. She says some people can understand her on the phone but some can’t, so Adam translates for her.

Since her diagnosis in 2019 many aspects of Helen’s life has changed. Before HOD, Helen had custody of her two young grandkids, she was very active and out every day, and she was the head of her household. Now, after adjusting to life with HOD, her grandkids live with their aunt, because Helen and Adam are unable to care for them. The rest of her family has moved south but her son Jason moved back from Los Angeles to help her. Helen goes to the senior center once a week and visits her grandkids. The majority of her time now is spent inside doing puzzles, watching tv, and spending time with her little dog. Adam has taken over as the head of household and they also have a CNA come to the house to help with household duties.

Helen is very grateful for her husband Adam and her little dog, both bringing great comfort and support. She is taking life with HOD one day at a time.