About

In 2019, our mom had a hemorrhagic stroke that left her in a coma for several weeks and in a minimally conscious state for a month. When she awoke, it was very effortful for her to move her mouth intentionally. She had severe global aphasia. She also had severe right-sided weakness which included her hands and legs.

She was recommended to a local skilled nursing facility, where doctors expected she would spend the rest of her life. The prognosis was that at most she would use a motorized wheelchair and be able to grunt her needs.

Four months after her stroke she was discharged to go home. She walked (yes walked!) to the car. She was using both of her hands and legs without special equipment. In fact, the facility made a cast for a leg brace twice (one long, the other short) but by the time each brace came, she had progressed to the point where she didn’t need it. She was able to follow commands, give basic biographical information and say the name of loved ones. But she still had a long way to go with speech and orientation. Two years later, she gave a speech at her birthday party, although she made word choice errors in most of her sentences, the key meaning of her sentences was understood. In summary, she appreciated us and she wanted us to enjoy the night. Enjoy we did! She danced with her family and laughed.

Everyone asks us, how did we achieve such remarkable outcomes. We’ve developed this website to share what we did. We are not medical doctors so we are not providing medical advice. We are simply sharing what we did for those who are interested in having a conversation with their doctor about what we did. We have also provided a shopping list that includes some of the items we purchased to support safety and recovery at home. At present the webpage is barebones. But we hope to expand over time.

What we did:

First, we went against the original treatment plan that recommended skilled nursing, because we felt she needed more aggressive therapy than what was available at skilled nursing. We made this decision by getting a second opinion from a friend. For those interested in a more formal process, Shirley Ryan Ability lab offers second opinions virtually for outpatient services - not sure if it applies to inpatient placements. Instead of sending her to a skilled nursing facility, we sent her to Helen Hayes Hospital, an acute inpatient rehabilitation facility that specializes in working with patients who are minimally conscious. The care at Helen Hayes Hospital was exceptional and they used all of the state-of-the-art technology with our mom.

Second, we showed up on a daily basis and got a report from each therapist working with her each day. We asked for homework assignments. After she was done with her 3 hours of therapy in the morning, we did the homework with her in the evening. We helped her stretch all her limbs every two hours to prevent contractures. We refused to accept any discharge plan that was not “home”. No seriously, we joked that there wouldn’t be anyone to pick her up on discharge day if the discharge plan did not say home!

Third, we made sure that she immediately transitioned to speech therapy when she got home. She did outpatient therapy at local facility that was paid for by insurance. We also paid for at home speech therapy. So, she had 4 speech therapy sessions a week for at least a year and at least two sessions a week from year 1 to year 2. She had home health aide or family support with homework assignments at least 3 times per week.

Click on our shopping list in the home tab to see the tools we found helpful for recovery.