Happy Birthday DMS!

A 32 Year Journey
By Carol G Winchester, President/Founder DMS

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As I write this blog post today, I am reflecting on the fact that tomorrow, Feb 2, 2024, is the 32nd anniversary of quitting my job as a Regional Manager for a nationwide rehabilitation company to start the development of mobile dysphagia diagnostics utilizing FEES or the Fiberoptic Endoscopic Evaluation of Swallowing. Educated on the master’s level as a Medical Speech Pathologist from Bradley University, I had the privilege of attending a program that was closely associated with the University of Illinois School of Medicine. We were given so many opportunities to do things that were unusual at the time (1977-1979) including attending weekly reconstructive surgeries, weekly participation in clinics that local specialty physicians volunteered their time for those without the resources to get the care they needed, therapy specialty clinics, and school system internships. The one area though that was lacking was dysphagia or swallowing disorders. At this time in history, it was not yet common practice for speech pathologists to address the issues associated with swallowing outside of the hospital setting. Having graduated from St Mary’s – Notre Dame with a bachelor’s degree in communications, I did not have a bachelor’s degree in Speech Pathology, so I had to do both the bachelor’s classes I was missing and the master’s classes at the same time. This provided me with a great opportunity, as I look back at how my career has turned out, as I didn’t know enough to not be creative. I didn’t realize that not having that bachelor’s degree meant that I was looking at the profession differently than those who had been a part of the system throughout their college career. I didn’t know what the limitations were, but I also didn’t know what the limit to the possibilities were. What I did have, however, was curiosity and purpose.

What was the purpose that fueled my curiosity? It began with my grandfather, Homer W Harrison of Evansville, Indiana. My grandfather was the nicest man. He always had a hug and a smile for his grandchildren. He loved his family dearly and was grateful…… he always said how grateful he was. This struck me as odd as a child as my grandfather did not appear to have a lot to be grateful for – from the eyes of a young child anyway. He was a CPA and had worked for a big company for years, until he had a stroke in his late 40’s. Luckily, he recovered from that stroke and went back to work, only to have another stroke some years later. At this time, he began to work at home taking on private clients and continued to do this until, yet another stroke forced him to retire. Each stroke took a piece of him, yet he regained his speech, physical ability to walk, and retained his sense of humor through it all. Before it was all over, he had suffered 9 strokes in all, and he just couldn’t withstand the final one. I had watched him through his journeys from the time I was just a toddler until age 25. I am certain that this journey of his was my motivation to go into healthcare as the conversations we had over the years focused on how he came back every time, how he felt, what it was like, and how he could find joy in his situation. I was so curious and was so grateful for all the doctors, nurses, and therapists who had helped him along the way, not to mention the role my grandmother took in his recoveries.

I had just graduated with my master’s degree, completed my internship year in the hospital where I started their Speech Pathology Program, and had just delivered my second child when he passed. This was a time, 1981, when rehabilitation services were just beginning to move from the big city hospitals to the country hospitals and were dipping their toes into the nursing home settings. Rehab was wrapping its arms around more and more folks that desperately needed the services they could offer. Physical, Occupational, and Speech Therapy were expanding. It was an exciting time to be involved. I moved up within the systems as I got more experience, and it taught me that there was so much that we didn’t know….so much more we could be doing…so many patients who just didn’t have access to the care we could deliver if they were lucky enough to be in an area with services. I kept thinking of my grandfather and how grateful he was to have been in a city that could provide him the great care he received. Now I finally understood what he meant by being grateful!

I was lucky that I came from a supportive family. My father and mother were very proud that all three of their kids were at St Mary’s and Notre Dame at the same time. My sister is the oldest and she was a senior when my brother who was one year older than me was a sophomore, and I as the baby of the family, was a freshman. My Dad often said that he planned his whole career to have three kids there at the same time. My major was communications and as such I was able to be in the radio/tv/film department as well in the creative writing arena. I loved it and took advantage to learn all I could about the technology of the time. In retrospect, this was preparing me for a field that did not yet exist—mobile endoscopy with FEES. My ability to figure out how to put the equipment together and make it mobile was key in making up this area of expertise, something other speech pathologists had not been exposed to. I remember going to my mom in 1992 and explaining that I had an idea to bring this procedure to nursing homes in rural communities, like the one in central Illinois where we grew up. I had put together a whole presentation about the cost of the equipment, my idea of how it would work, and the fact that I didn’t have one single customer. I had, however, been lucky enough to attend a training put on by Susan Langmore at the VA in Ann Arbor Michigan where I learned how to perform the FEES. I found that I was quite good at it and could see a future need for this in our Speech Pathology profession, if only I could get a loan, get customers, convince nursing homes to let me see their patients, convince Medicare to pay for it. Oh my! What in the world was I thinking? I’ll tell you what I was thinking. Much like when I got my master’s and didn’t know what wasn’t possible, I didn’t think that there were any barriers to making this happen either. I felt that my purpose was to help people who otherwise would not have the opportunity to improve their comfort, care, and quality of life if we could just help them with their dysphagia.

Just as I began this journey, my grandmother, Isabelle Harrision, fell and broke her hip. She had surgery that day to repair it, however they needed to go back in and repair it again two days later. She had two surgeries in 48 hours and was being sent home to recover. Because of the inaccessibility of her home, she ended up having to go to a nursing home for a few days for rehabilitation, but she did not last one full day. You see, because of a lack of care at the hospital, no one knew that she was aspirating on her food and liquid, and it filled up her lungs. This is not uncommon after having anesthesia twice in a short time, and she was in and out of the hospital so quickly that no speech pathologist had looked at her swallow to determine that she was a high risk. She passed away in her sleep that night. I was devastated that something as simple as an evaluation and/or a diagnostic could have changed her outcome. It simply wasn’t necessary, and now my purpose was to try and change this practice. No one should be admitted to a nursing home without knowing the risks involved of the food and liquid that they are being served. She’d asked for an iced tea and a turkey sandwich, neither of which should have been provided with her recent history of anesthesia and age without an evaluation. The development of a dysphagia risk predictor immediately was put on the to-do list. It is now a part of our SwallowSafe.com website to hopefully help patients, families, and therapists to quickly assess this risk.

I ended up talking to some of the administrators of the nursing homes that I had been a regional manager for in Indiana into letting me try my mobile FEES procedures in their nursing homes. To this day I cannot believe that they trusted me to do this, but some of those facilities still refer to us 32 years later! Within a year I had 175 nursing homes in Indiana referring to my company and I was on the road every day providing services to all four corners of the state. I was tracking data and providing it to HCFA (now CMS) to do my part with the process of getting CPT codes for the FEES procedure. It took 10 years to get those codes and many folks in the Speech Pathology field are responsible for helping the American Speech Language and Hearing Association petition for coverage from Medicare.  In 1994 we expanded our reach to include Florida and in 1997 I relocated my family to Sarasota, FL to run the company from there. Adding endoscopists, partnering with large rehab corporations and being a part of Genesis and Sun Healthcare all resulted in cementing the practice of mobile endoscopy utilizing FEES within our profession. My purpose of expanding the reach was a reality as we were providing services across the country, at its largest, in 42 states.

With no time to rest on my laurels, I learned another lesson through tragedy. My Mom was diagnosed with ovarian cancer in 2002. While receiving chemotherapy she was re-hospitalized. During this stay she asked a nurse for a chocolate milkshake. She said she had a dream that she was sitting under a tree drinking a milkshake and that it tasted so very good. The nurse, without looking at the chart and seeing that she was to be on a low acid diet because of her severe gastric issues following the chemo treatment, gave it to her anyway. She drank it, vomited, aspirated the vomit, and went into an aspiration pneumonitis and died 6 hours later. I had just left the hospital to run an errand for her when she called me on her cell phone to say ‘come back quick – somethings very wrong with me’. We helplessly watched her pass away. This shouldn’t have happened. When questioned, the nurse said that there were so many papers that she hadn’t had time to find the diet and that it was buried in the paperwork. She also said that the speech pathologists talked in Speech lingo that she didn’t understand. That’s not an excuse, but it did push me toward another purpose. If the healthcare workers can’t take the time to read everything they are given, we need to make sure that the information is front and center – on page one of any reports, and that it is in plain English as to what the risks are. I immediately re-designed our paperwork and made sure that every single report is valuable to anyone that reads it. If they want more information, go ahead and read the rest of the pages of the report. But if you only have one minute? Read the first page. It’s all there!

As I continued to lecture across the country, I found that dysphagia is sometimes misunderstood as to the cause and effect of the treatments. For some reason there was a myth that unless you aspirated, it’s not a problem. Although malnutrition, dehydration, weight loss, congestion, pneumonia etc. are all issues, it was being identified as a pass-fail situation. Did you aspirate or not? If not, then you passed, and if you did, then you failed. That made no sense to me. I knew that I could not change what happened to my mom without changing how this was perceived. When I was teaching, I started breaking it down into the five systems that must work to swallow, and what happens if one of those systems malfunctions. The audience was finally getting it and as we moved into treatment options, we would review how the treatment affected the Five Systems of Dysphagia, as I called it; Neurological, Gastrointestinal, Respiratory, Muscular, and Cognitive. It was sinking in, and I was pleased. I went back to our forms and broke down everything that happens during our evaluation into the five systems and all the sudden we had therapists calling and thanking us for helping them explain it to their patients. We have a video on our websites for anyone to use in the hope that it helps the patient and family better understand – not to mention the speech pathologist who perhaps doesn’t have a lot of dysphagia experience. This was driven by purpose.

In 2013 I had an idea that it would be so great to be able to take this procedure into the Assisted Living and Independent Living Communities, and perhaps even into the Home Healthcare communities. Heck, why not also provide this service in doctor’s offices to their patients. Having worked in Home Healthcare in the past, and having done research in physician’s offices, I knew that there was a patient population that needed help. I called them the sandwich population suffering at home. Not sick enough for a hospital or nursing home, but not well enough to do everything they want to do without feeling poorly. I decided that I would need to see the patients myself and figure out how to make someone better in an unsupervised environment. The task was daunting, but there had to be a solution.

I would like to say that I knew exactly how to develop my outpatient program because of the experience that I had with mobile endoscopy for all those years – but then I’d be lying. I thought I knew, but as with anything, you don’t know what you don’t know until it comes up as a problem to be solved. One of the biggest issues that I was seeing was the apathy among the patients who had been to see a speech therapist somewhere along their journey and were disillusioned because although they had graduated from the program, they still didn’t feel well, or their problems weren’t resolved. In addition, I was seeing noncompliance, not because they didn’t want to do their exercises or restrict their diets, or whatever we were asking – but because they didn’t understand why or how to fit it in within their lives. That seemed to come forward as the key. If you can’t fit what needs to be done within the life they are living, then it isn’t going to happen. Finally, the situations in the assisted living were different than independent living, which was different from patients living at home. Whether they were with a spouse, child, or relative also factored into the success of the treatment.

I went back to the drawing board and began with a new evaluation. I couldn’t find one sensitive enough to encompass this entire population and realized that I needed to take bits and pieces of evaluations and make them specific to the setting. Understanding that the recommendations we make are not only based on the results of the FEES, but also all the risks that have been identified, it was imperative that any of my Speech Pathologists could perform an equally thorough evaluation given the right tools. So, that only took a few months, right? Wrong! This process took more than 4 years as I would see patients with a process, monitor their outcomes, make changes, see more patients, monitor their outcomes, and so forth. Finally, however, I came up with tools that highlighted the issues that needed to be addressed first, then second, then third, and on and on. Doing things in the right order seem to be the key when it comes to the Five Systems of Dysphagia. Knowing that, we can get the patient to feel some success and be encouraged by the outcome. The other piece is to empower the patient to take what they have learned and use it moving forward so that if they can manage their dysphagia on a day-to-day basis, they are going to be successful. This is what long-term management looks like.

As I was developing this process for the outpatient program, I was trying to get a foothold into home healthcare.  The problem was that I didn’t really understand what was missing and how to affect their outcomes during their home healthcare episode. They had so much going-on after going home, and I couldn’t grasp what was important to not only them, but the home healthcare agency as well. I had tried different approaches to the companies, saw home health patients, but couldn’t get the diagnostic FEES to become part of the process. What was I missing?

My brother, Jim Ghiglieri had a stroke during this time and I, for the first time, saw the process as it unfolded. I saw how his wife, Mary Kay advocated for him, had to manage so many aspects of his care, and was the driving force behind his recovery. He would not have made it without her, that is for sure. As he began to recover, we had many Face-Time sessions when Jim was upset or confused or afraid of his condition. I spent hours on end talking him through different phases of not only his dysphagia care, but also his cognitive issues and physical limitations. Mostly I was here to encourage, explain, share research, and interpret results into plain English if necessary. I quickly began to realize that there was so much more to this period of Home Healthcare as my view as a therapist had been so limited. Seeing what the patient and caregivers really needed in way of support pushed me to develop SwallowSafe.com. I talked to my brother about this many times and asked what he would have wanted to know. I asked his wife what support she would have liked to have had. I then talked to other patients and caregivers about what gaps they thought needed filling in when it came to their recovery at home. Interestingly, what I first thought was possible or necessary with SwallowSafe.com changed dramatically as my brother went through his recovery, his holidays, vacations, family events, etc. They all require different levels of support.  There is nothing to more motivating to your purpose than personal experience. I can honestly say that SwallowSafe.com was developed in honor of the experience that Jim and Mary Kay had during his multiple strokes. There are areas for caregiver explanations and encouragement, recipes to include everyone in the family meal, low priced consultations if there is confusion in dysphagia care, and even areas to learn more about cognition and stroke recovery. We also have areas to explain who all these professionals are and what their roles entail. I have found that many patients and caregivers don’t know who to trust when more than one opinion is given and they are contradictory. It’s all so confusing during a tough time for everyone. This is my way to give back after being in this field for almost 45 years.

Sadly, we lost Jim in December of 2023 after a surgery from which he just could not recover. In the almost six years that he survived since his stroke; however, he experienced so much joy and spoke of the gratitude that he had toward his life, his wife, his children, and grandchildren. I talked to him just a few days before his passing and he reiterated what a great life he had and how happy and grateful he was. He had returned to playing golf every day last summer, something none of us would ever have expected. His purpose for recovery was to do that, and he achieved it!

What’s left? Well, because I clearly don’t think there is anything we can’t do if we try, I put together a FEES Training Center in Sarasota to help anyone who wants to learn how to provide this service. I tried it out, refined it, studied it, and we perfected not only the educational modules, but also the training tools. We also put together equipment that is cost effective for anyone to be able to afford to provide the service. Don’t let that be a barrier. One might say, why would you do that? Won’t it impede on your business? The answer is I do it because it’s the right thing to do much like I’ve done everything so far. I am not going to be around forever, and we need this dysphagia specialty with FEES to go on for another 32 years at least. The population of geriatrics is the largest ever and that is going to continue for the next 20 or more years. The average number of physicians and therapists that the typical dysphagia outpatient sees without resolution of symptoms is 9. There is enough work for everyone. Having survived through the pandemic, we have made it our mission to open our doors to anyone in the world who wants to be educated and trained, whether in person in Sarasota, or by concierge at-home training. We have had trainees from all over the country, Australia, Abu-Dabi, Spain, and Italy. We also are growing our own team throughout the eastern 1/3 of the USA and continue to hire and train those special folks who share our vision.

32 years….it seem impossible that it has been that long. They always say that time goes by in the blink of an eye, and that is so true. I’m proud of what we have accomplished as the DMS Team….and it is a Team. Let me make no mistake about that. I could not do what I’ve done without the support of my staff and the amazing Speech Pathologists that work for DMS. We could not have launched any of our three sites; DysphagiaManagement.com, SwallowSafe.com, or FEESTraining.com, or the myriad of videos and commercials that we have without my oldest son Joe’s genius. At this stage of life and after 32 years of having the privilege of leading this team, I truly understand how much gratitude plays an important part of every day’s purpose.

Happy Birthday DMS! 32 looks pretty darned good on you!