How a caretaker learned to find purpose when her husband was diagnosed with ALS at the young age of 43.
One day, during the week of Thanksgiving,
I developed a stiff neck. At first it wasn’t terrible but quickly got that way. So, I decided it was the holiday season and I would “treat myself” to a massage. So on November 25th, I went to get a massage that focused on my neck and as I was leaving stopped next door to get a quick adjustment from a chiropractor. What a mistake!
The next day my neck pain had moved mostly to a splitting headache that was extremely bad. It made it difficult to focus on things but I managed. I generally have a high pain tolerance and ironically I tend to complain more about little pains than major ones. I just shut up and push through.
Finally, on November 26th I couldn’t take it anymore without a doctor. I called their office (it was a Saturday) and was told I could get an appointment for first thing Monday morning. So on November 28th, I went in, told the doctor the issue, and he said he thought it was likely just “the crook”, something you get from sleeping wrong. I said I knew what that was but this had been more than a week… he said sometimes that happens and wrote me two prescriptions.
Over the next few days nothing really got better. My head was hurting all of the time and I couldn’t take enough Tylenol. December 1st I called the doctor back and made yet another appointment. This time I was told we would do fasting labs so I shouldn’t eat after midnight. Later that night I went to a soccer game w/ Courtney. At one point my head started POUNDING… I felt very dizzy… but I didn’t say anything. Suddenly Courtney looked over at me in a panic, her exact words were “you look like you are dying — there is no blood in your face!”. I chalked it up to having not had much to ate much that day. On the way home I stopped and grabbed McDonalds and felt a little better.
The morning of December 2nd, I went in, and this time I was sure to mention getting dizzy. The doctor told me it could be those two medicines. He said he would change me to a different medicine and if I was still having problems the next week to call him and he would send me to a physical therapist.
The next few days the headaches seem to come with more fervor and intensity. For some reason they seemed to be worse just before bed. In my heart I felt like something was really wrong, more than just a pulled muscle, but the doctor twice had assured me I was fine.
Monday December 5th things got worse. I stayed at the office most of the day but my headache was so bad at times I laid my head down on the desk and my vision was a little blurred. I had a showing that evening in Cherrydale and decided to go from there to the new UrgentCare center. The doctor there did four x-rays and then told me he was sure it was Occipital Neuralgia. In other words, the nerve that runs from the base of my skull to behind my eye was inflamed. He gave me two shots and scheduled a follow up the next day for a nerve blocking shot. I was still super concerned and can still see him saying to me “I’m not, I have an MRI machine right here, if I thought it was needed I would use it.” I left UrgentCare with two prescriptions and went to RubyTuesdays to eat.
December 6th…. When I woke up I reached over for my phone. I knew it was not yet time for my alarm (I never wake up before my alarm) so I wanted to see what time it actually was. It was just a few minutes before 7am. I only know that because my alarm went off before the paramedics arrived. As I turned my body the entire world turned.. and didn’t stop… at all. I instantly felt like I, all at once, was the drunkest I have ever been and most hung over. I closed my eyes but everything was still spinning. I threw the cover off of me and broke out into the most intense sweat… I don’t sweat much anyway… so I would venture to say this was more than I had sweat during either of my two previous half marathons. That was what tipped me off that I had a bigger problem. For some reason, I’m not exactly sure why, I thought I needed to go grab my thermostat. As I went to put my feet on the floor my body sort of threw me forward towards the door. I more or less bounced down the hallway from wall to wall until I got to the bathroom. The strangest thing about that is I sort of “watched” myself from above me. I don’t know how to explain it except I felt like I was above my body watching what was happening. I now know that is stroke specific and there is some scientific reason I felt that way… at the time, it was scary. Once I made it into the bathroom I fumbled through the basket where the thermometer should be and started to realize I was fading… and fast. I ended up throwing things around the bathroom… Lee said when he came into the house the bathroom looked like an intruder had been in there, my drawers and closet stuff was everywhere.
Around this time I started having this back and forth in my head. One minute I knew I needed to get to a hospital… the next second I thought I was fine… just over reacting. Again, apparently there is a scientific neurological reason for that. In my clearer thoughts I did realize I needed to get help… and fast. I made it back down the hallway and onto the bed. As long as I laid flat I didn’t feel quite as bad, so I tried to lay on the bed, still. I called Courtney a few times, one of my officer friends, and then called Lee. When Lee answered all I said was “I’m calling 911. Come to my house.” and hung up.
As I talked on the phone to 911 I told them I thought maybe I was having a heart attack. This thought only came to me after I had a pain so strong that my entire body wretched. It felt like my entire body was trying to fit into this square on my chest. My knees, legs, feet, head and arms. Thankfully I had 911 on speaker laying beside of me. I told her I couldn’t talk or breath and she said just stay with her. I soon heard sirens.
When they first got to the house they couldn’t get into the door. I swear it sounded like they were about to tear it down. I had told them to come to the back door but that message wasn’t communicated. Lee said 2 ambulances, 1 fire truck, and 2 cops were here when he pulled up. He said my living room and dining room were filled with people. I only saw two. I kept my eyes shut most of the time because the pain was so bad. I laid back in the chair while they did an EKG and started an IV. The the head EMT helped me lean forward so he could listen to my breathing. I started throwing up and instantly I could sense their concern. They eventually got me to an ice cold and wet stretcher that was at my side door and loaded me into the EMS. They did ask where I wanted to go and I said St. Francis. They asked if I meant Eastside and I gave a thumbs up. On the way to St. Francis I threw up several more times and they started giving me meds to stop that.
Once at St. Francis the doctor on duty came in instantly and started working on me. They did several test but couldn’t figure out exactly what it was. He then came in and told us he felt like he needed to be an MRI but radiology may not think it was necessary for me. He said I may be having a-typical stroke symptoms but wasn’t too concerned. Radiology did do the MRI, thankfully, and a few hours later he walked back into the room and without an prep just said “You’ve had two cerebellar strokes today and clusters of strokes previously. We need to move you to Downtown because all of our rooms here w/ the equipment we want you on are in ICU and are full.” I immediately broke down but even then none of us in that room realize the gravity of the situation(s) that were about to happen. My heart rate spiked and the doctor had to give me something to calm me down. They got me calm, packaged up and sent me to Downtown.
At Downtown I had a great nurse but couldn’t sleep. I was scared to fall asleep. They gave me some meds to knock me out and I woke up on December 7th at St. Francis Downtown. First thing in the morning they started doing more test. All we knew then was I was having strokes but no one knew why. Not too late in the morning the doctor came in and said one of the test showed a vertebral artery dissection, a tear, in the artery that feeds the back of my brain. She said it was her opinion that GHS needed to be called in on the picture and asked me to sign something saying she could loop them in. Not too long after that the neurological surgeon at GHS ordered more test. Late in the night on Wednesday I was told that those test revealed I had a blood clot at the base of my brain. They GHS doctor had essentially taken and at the moment, I would only be moved to GHS if surgery was warranted.
I woke up on December 8th at St. Francis Downtown but it wasn’t long until the doctor told me I needed to be moved. I had no clue what this meant… would I be having brain surgery? She didn’t either but felt like it was just so the GHS team could see me. What no one prepared me for was where I was being moved. During the ambulance ride I was told there are 4 (or 5) levels of care an ambulance has. I was put at the highest level which required a specific person ride in the ambulance with me. Once at GHS they took me to the Neurological Trauma ICU. I went from a private room at St. Francis to a room in GHS that was HUGE and set up in a way that surgery could take place. The room sealed. Anyone coming to see me had to go through a series of cleaning procedures and they gave me a sponge bath as soon as I arrived. Honestly, that was terrifying. I was assigned two nurses and met the neurologist and his NP that would take care of me. I’m not kidding, I had two nurses that were station at the door of my room. Nobody warned me about that level of car I would be getting and it terrified me.
That night I couldn’t sleep… they also couldn’t really give me anything to go to sleep. They started a stroke protocol that required them to wake me every hour and ask me my name, my date of birth, who was President, level or pain, and to hold my hands up, then my feet… etc. My head was still killing me but never made it above a 7 while in the hospital. December 9th, I was in Neuro Trauma ICU, though, I didn’t really “wake up” there.
On December 10th, in the evening the doctors said they would do another MRI to see where things were. I was told this test at 5pm would be a defining moment in the stay…. were the meds working or not? Around 6:45 the doctor called my nurse’s cell phone and asked to speak to me directly. He then informed me that I had two vertebral artery dissections and that one had been hidden by the blood clot. The clot was now gone, thanks to the meds, and they were going to switch me from one IV drip to a new medicine. Let me just say–this doctor is amazing. Both him and the NP spent hours with me over the several days I was in ICU, letting me ask as many questions as I could. At some point, once I had finished all of my questions, he sprung it on me that I have a hole in my heart, but said I was born with it so it’s no concern. At 9pm Saturday night they started the new med and at 11pm they turned off the other IV. I know these times because they were very specific with them. They even had an alarm set for 11pm to turn it off.
December 11th. Aside from being in of the most critical care units in the Upstate, things were a little better. I didn’t feel quite as bad, and they helped me out of bed and into a chair. They did blood work around 4am and the doctor said he felt good that the meds were doing their job. He let me be moved out of ICU late that night into the Stroke Center and honestly I thought I would sleep well… I didn’t. It was a very long night.
December 12th. The morning started early. The NP, then the neurologist, the Stroke Center Director, the Head Nurse, and several others were in and out of my room. Everyone seemed sort of curious about my situation. A 35 year old guy who based on all outwardly appearances is healthy…. who runs… rides his bike 40 miles at the time… what was all of this about? Eventually they let me come on on the 12th with a few guidelines as to what I can and cannot do.
Each day has been better than the one before, which is amazing to me. I’m finally to the point where I can go to sleep without being sure I’m going to have another and not wake up. I can honestly say this has been the most terrifying thing in my life. I already look at things in a totally different way than I did before.
What caused the strokes? We know for sure that the strokes were caused by the two tears in my arteries. My body was trying to heal those tears by clotting like a scab and throwing off blood clots into my brain, which were causing the strokes. How many I had they didn’t know for sure, other than a lot, why the two Tuesday were bigger they also weren’t exactly sure. What they were sure of is that some trauma has happened to my neck. They all, every single person in the ICU, said they feel reasonably certain it was caused by the adjustment I had the day after Thanksgiving and that the very least it was made substantially worse. He told me I could never do anything that put that sort of pressure on my neck again, such as skydiving (thankfully it’s off my bucket list already) and roller coasters. He also told me to be very careful with my neck, especially in the near term while I am on all of these meds, and to never, ever, ever get a neck adjustment again. Ever.
How am I? They told me I would have to get used to a new normal, which I’m doing. My neck, my throat, my head, my arm (left) and my leg (left), all hurt at different points. Sometimes worse than others. I get dizzy and that headache feels like someone is stabbing me…. but… I’m getting used to it so it’s not overwhelming. I’m able to walk around more and I’m fairly stable (mentally and physically). They said most of the pains and dizziness should go away in the next several weeks or months. I trust they are right. Even if they aren’t though, I’m alive. That’s something they all drove home to me several times, that I very easily could have been a vegetable or dead. The NP said almost daily “I hope you know how close you came to being a vegetable and how lucky you are.”
Every day is a little better…every week is a little better…each month is a little better. As of this update I am almost six months past my strokes and I still have extremely painful headaches and neck pains. I have a good day or two normally followed by a bad day. I tend to answer, “How are you?” with “okay” or “getting better”. The truth is I am getting better, but it’s rare that I am okay. Mornings are my best time… lunch things tend to start to take a downward turn and by the evening I sometimes feel horrible, often going to sleep unsure if I will wake up the next day or not.