Getting the right care, at the right time, from the right caregivers, combined with a “never give up” attitude of a special couple, makes for one very inspiring stroke story. Ronald and Cyndi Raines are sharing their journey because they are both grateful and want to encourage others. Their lives took an unexpected turn on Thanksgiving Day 2016 at their home just outside of Port Huron. Right before dinner they began watching the Lions game when Ronald, age 78, noticed the trash was full and decided to walk around to pick up it up. He went into the bathroom to check the waste basket when Cyndi heard a loud noise. She went to investigate and found Ronald laying on the floor, unresponsive. She also noticed his face drooping on one side and was aware that could be a sign of a stroke. She called 9-1-1.
Ronald was taken to McLaren Port Huron by ambulance. Once there, an Emergency Room physician confirmed he was having a stroke. The E.R. staff asked Cyndi for her permission to give Ronald tPA (Tissue Plasminogen Activator) a clot busting drug to open up his artery. She agreed. Ronald was also evaluated via telestroke technology by an interventional neurologist from McLaren Flint. This technology allows highly specialized doctors to beam into the patient’s bedside from a remote location and assess the patient, review CT scan images, and discuss best options for the patient with onsite physicians and the patient’s family. Once stable, Ronald was transported by ambulance to McLaren Flint as he was still at risk for having a second stroke or needing an interventional procedure. Fortunately, after a couple of days in the Intensive Care Unit, Ronald began to improve. He was transferred to the stroke care unit to continue his recovery. He had some weakness on one side, but was getting stronger and aware of what had happened to him. What was not returning to normal was his ability to speak.
“We were given a memory board with pictures on it so Ronald could point at them to communicate with us,” states Cyndi. “Often we were playing a guessing game, he grew frustrated and so did we. We prayed often for his ability to speak to return.”
After a week in the hospital, and some time to continue to recover at home during the holidays, Ronald began to find his voice in late December 2016, with Katie Mayes, a Speech Language Pathologist at McLaren Port Huron.
“Ronald had the most profound case of apraxia I have seen in my career,” states Katie. “Apraxia of speech occurs when an individual is unable to respond to the brain's commands to make motor movements, including those that produce speech sounds. Ronald could literally only say hi and no. Generally, patients with Apraxia can make some speech sounds and limited sound combinations, but in Ronald’s case, those were very significantly impaired. Our starting point for speech therapy was to build upon those few sounds he had, forming them into basic functional words, and to then retrain him on how to produce new sounds. We also developed numerous home programs, so they could practice sounds and words at home, which they were very devoted to completing. They were certainly the most compliant patient/caregiver team I have worked with in terms of dedication and drive.”
Determined to give Ronald and Cyndi all the tools possible to get him speaking again, Katie reached out to Emily Carvill, a Speech Language Pathologist at McLaren Flint’s Neurologic Rehabilitation Institute. Katie knew Emily had experience using an alternative and augmentative communication (AAC) device called a Lingraphica TouchTalk that may benefit Ronald.
“I had to evaluate Ronald’s ability to work with the technology and make sure he could navigate it,” states Emily. “I was using it to help him to initiate, or start, what he wanted to say and to help improve the frustrations in communication. The device is a tablet that has picture icons that will say what the picture is and then the patient is taught how to touch the picture and repeat what it says. He and Cyndi were phenomenal. From the time they received his loaner TouchTalk, they diligently worked to learn the device and incorporate it into their daily speech therapy routine. Within a couple days Ronald was able to navigate through the many different categories and was repeating most everything that the device said. Due to a change in insurance mid-way through our treatment, it was approximately three weeks between when Ronald received his permanent device and when I saw him next for treatment. The improvement was astounding – he was talking in phrases and short sentences! Ronald and Cindy’s hard work with the traditional therapy exercises that Katie had given them and their work with his Lingraphica really paid off!”
Emily wanted Ronald to have a Lingraphica TouchTalk of his own, as opposed to a loaner device, and she did all she could to make it a reality.
“Emily jumped through hoops to get the device approved by my insurance company,” states Cyndi. “It is very expensive technology and she made it happen. What a blessing it was to have so we could do therapy at home with it then, now and in the future.”
When Ronald’s time with Emily ended, he went back to Katie for the rest of his traditional speech therapy sessions. Cyndi cannot say enough about all of the caregivers who they encountered during Ronald’s journey both at Port Huron and in Flint. However, they made quite an impression themselves on both Katie and Emily.
“Never seeing such profound apraxia before, makes it that much more rewarding to see Ronald thriving,” adds Katie. “Cyndi has always been right there by his side as a very dedicated caregiver. Ronald has made the most progress of any patient I have worked with. They are such kind and inspiring people that I developed a unique relationship with them; a friendship. Once Ronald’s therapy ended we decided that we would we get together about once a month to catch up on all that’s new in our lives.”
Ronald and Cyndi continue using all of the tools and techniques Katie and Emily taught them.
“My goal is to be able to do public speaking about my journey and stroke awareness to help others,” states Ronald.
With Cyndi by his side, and their combined “never give up attitude”, in the months and years ahead, others will surely find encouragement in Ronald’s new found voice.