My name is Dave Krygiel; I was born May 11, 1946.
Advanced Thanks
On May 8, 2015, I suffered a brain-bleed with a brain mass. I had a very difficult time emotionally recovering from this event. Clinically, there is no medical recovery, there was only learning to accept it and then learning the skills to live with post stroke damage.
As I dealt with my recovery and listened to other survivors and caregivers, I realized that there were many of us with similar experiences. The more I interfaced with other stroke survivors, the more I found myself advocating for them and their caregivers. It has become a goal of mine to try and change the way we are cared for. I feel very strongly that our story — the patient, the caregiver — is not told from when the stroke event begins until we are left facing a new world as a different person.
A version of the story below was initially sent to Jin-Moo Lee, MD, PhD, in the hope that the school might use it to educate students about what happens to the patient during and after a stroke event. Because of Dr. Lee’s consideration, the story became a basis for several opportunities with the help of Douglas Larsen, MD, and Cathy Dai, MD.
My education journey with WashU Medicine began in early 2024 after I was looking for help to make a difference.
I must thank so many people at WashU Medicine for the opportunity to tell my story. Drs. Jin-Moo Lee, Douglas Larsen, Cathy Dai, Brendan Eby and Charles Kircher have all supported me and provided me with the chance to interface with residents, students, faculty and administrative support. Drs. Eby and Kircher invited me to speak at the Brain Attack! 2025: Comprehensive Community Stroke Care meeting where I had the opportunity to speak with doctors and therapists. This is quite a commitment from WashU to tell my life story of stroke.©
My story
On May 8, 2015, at about 1:30 a.m., I began feeling a little bit of pressure in my head; I just thought it was typical sleep deprivation. This was not unusual as I was a mainframe computer programmer where I normally would spend the early hours of any day/night programming when the mainframe was available to push code up. The first symptom I noticed that the mouse pointer and keyboards entries were not responding properly to my right hand. I tried to leave my office but found I could not operate the doorknob. I could see the knob, but for whatever reason I could not grab it.
I called for my wife, and she wanted me to go to the ER. I said “No,” thinking I was just tired. Besides, I was set to see my primary care provider (PCP) at 8 a.m. that morning for routine care. Neither my wife nor I knew the FAST acronym nor did we know anything about a stroke.
When we did see my PCP, he recognized the signs of a stroke and sent us to Mercy Hospital two blocks away.
In the ER, I remember being calm and aware of everything going on. There were no prior injuries that could lead to my symptoms. I was eventually evaluated for strength and did not have strength on my right side. I could not do the “touch your nose test;” I kept touching my forehead. CAT and MRI scans were ordered (I am claustrophobic and get anxiety and panic attacks in small spaces); this caused more stress. I had a brain bleed which limited visibility of the brain mass in the scans, so providers could not tell me the full extent of the brain damage for a long time.
Later, as I was going through the ICU on the general neuro floor, I began noticing the aftereffects of the stroke. I would try to call my wife or others but never reached them. I knew the phone number, but no matter how hard I tried, I could never dial the correct number; my fingers could not process the information correctly. The occupational therapy team worked with me doing finger exercises. I was unable to do them when I first arrived but had gotten good at it before I was discharged, as well as walking.
On discharge day, I was reminded about the large pool of blood in my brain that continued blocking the view of the brain mass. I was wheeled outside to the curb, our car door was opened, I was helped into the car, the transporter wished me well, the door was closed, and this ended my care. Like many other stroke survivors, we were left with the feeling that our support lifeline was cut once we left the hospital.
After my visit to the ER, I had what I thought was a routine check in with my PCP. My PCP told me I was not lucky with the stroke and that I would not make it past six months. I went to see my priest and then went to a neurosurgeon for more tests. The neurosurgeon did an excellent job and ran numerous MRIs over the next several months until the blood in my brain cleared, and he was able to see the extent of the permanent damage from the stroke. The angular gyrus — an area of the brain that controls, in part, word and number comprehension, emotion regulation and social cognition — had died because it was deprived of blood.
Damage to the angular gyrus can cause a variety of symptoms, including:
- Gerstmann’s syndrome: A cognitive impairment that includes difficulty writing, understanding math, distinguishing left from right, and identifying fingers
- Aphasia: Difficulty speaking, difficulty naming things, understanding speech, reading, and writing
- Constructional disturbances: Impaired visuoconstruction ability
- Behavioral manifestations: Depression, poor memory, frustration, and belligerence
- Spatial disorientation: Difficulty with spatial orientation
I continue to have a number of the symptoms today.
A functional MRI and written test administered by a neuropsychologist concludes that I am normal, but am I normal? Come with me through a day in the real world and see how different my life is. Now, certain everyday challenges I used to be able to puzzle through cause me high levels of anxiety. Follow me in a checkout line and watch what happens when they only take cash. Ask me how to complete a basic maintenance task like changing a furnace filter while I am standing in a group of people. I was told I was normal, but I felt like something was wrong.
For years, I was lost and angry with the world. I began slowly withdrawing from family and society. I began to hide from social interaction. I no longer left the house. I was embarrassed because I could not complete simple sentences. I could not find words easily, and I began telling people “My dictionary was erased.” I could not answer essay questions. I found I could not complete a simple exchange of currency. In the early years, I could not add 3 plus 2 in my head. And I was ready to argue with everyone, I hated everyone and myself. And when referring to an object, that answer was always the “thing,” because I could not find the word I want to say. And I was putting on weight.
My life became ugly. I knew I was in a downward spiral, but I went looking for help and attended a support group with my wife, my caregiver. Eventually, I found my way to the VA Health Care System where I entered a new program, Whole Health Care. I was assigned a life coach, changing my life forever. I saw a psychologist, exercise therapist, nutritionist and a speech pathologist — all of which required ongoing visits, goal setting and progress accountability. Even after I was released from clinical help, exercise, nutrition and weight accountability continue today.There were many others who helped along the way including the veterans themselves.
I have spent 10 years trying to live with and accept this person that was forced on me at the flip of a switch. I can now say I am in a better place. I had to accept what had happened and that the world was not going to change for me. I was going to have to learn to accept my new life, not to focus on myself. I am doing things I never thought possible. I have lost 140 lbs. I am about to be 79 years old; I walk eighteen miles a week and workout at the VA Hospital Exercise Therapy Facility three days a week. I have been married to my beautiful wife/caretaker for 53 and a half years. I am no longer afraid to be in society. I have twice given speeches under the Arch to Bristol Meyer Employees Biking Across America for the VA and other organizations encouraging survivors that they can make it. Yes, I still have to suppress demons. Yes, I still have speech issues. And after I stopped thinking about myself and paid attention, I realized everyone was helping me all along.
Now, I am on this crusade. Now I want to help others. I want to change things for the better. I want other medical facilities to adopt the type of wrap-around services the VA offers. Part of that is presenting to current and future doctors. They have the power to change the direction of neuro support by starting something new, something different and being a leader in the world. Get up each day to make a difference. Don’t tell anyone you can’t do it. Everyone finds a way not to do it. Find a way to change it.
WashU Chancellor Andrew Martin said it best: Don’t just talk the game, don’t just give a speech to a newspaper, an audience or wherever. Do something! It isn’t all that hard and expensive to take the first step!
To quote Mahatma Gandhi,
“Whatever you do may be insignificant, but it is very important that you do it.”
Thank you to all those who got me through this:
Linda Krygiel – my wife\caregiver
Amy Will – my VA exercise therapist
Christina Karageorgiou, PhD – my VA psychologist
Carla M. Adderley, MS, CCC-SLP – my VA speech pathologist
Julie Kapp, PhD in Public Health – our daughter