My stroke was an intracerebral hemorrhage. It happened during my wife's father's funeral. October 11, 2011 was a beautiful fall day. My wife's father had died two days earlier after a long and full life. He had been a teacher, principal, and coach, and had influenced a generation of young people in the region of Kentucky where my wife grew up, so there was a large crowd gathered to say goodbye to him. I felt fine that day, there was no hint of what was to come. My wife and our two teenage children got up early and I drove everyone to the funeral home. We spent most of the morning there greeting visitors, then drove in the funeral procession to the church for a final service. My mother-in-law joined us, and again, I drove. We were positioned in the procession right behind the hearse. I experienced no symptoms during the short drive to the church, but at some point during that time, the bleed began. The hearse stopped at the church and I stopped behind it. The funeral home staff came to the back of the hearse, got the casket out, and began to take it inside. My family got out of the car and waited for me to get out and join them. Except that when I opened the door and tried to stand up, I couldn't. My legs wouldn't work, and I would have fallen on my knees if I hadn't been able to support myself by leaning on the car.
I managed to make it to the rear of the vehicle, and by this time my family saw that something was wrong with me. I didn'know what was happening, but having a stroke didn't occur to me. It felt like my legs had fallen asleep, so I told the others to go on inside, and I managed to get the rear door open and sat down in the back seat. My wife came to check on me, but I told her my legs had fallen asleep and for her to go inside and I would join her in a few minutes. She was skeptical, but I insisted, so she finally complied, but asked her nephew to stay with me.
While I was sitting there, trying to figure out what the deal was, my sister-in-law, trying to be helpful, offered me an aspirin. I refused it without really knowing why. I sat there for a few more minutes, but my legs were showing no signs of being able to support me. So even though I still felt no other symptoms, I told my wife's nephew to go in the church and get her. She came out, looked at me, and said, "You're having a stroke, you need to get to othe emergency room now."
I told her I wasn't having a stroke, but that I would go to the hospital after the funeral and burial were over. But she wasn't having it, and insisted that she was going to call an ambulance. Seeing that she was adamant, I relented, requesting only that she ask that it turn off its siren and lights when it got close. She asked the policeman who was there to direct traffic to make the call, which he did.
So, as her father was being brought out from the church for the trip to the cemetery, an ambulance arrived to take her husband to the emergency room. My poor wife had a decision to make, and she went to the emergency room with me.
Luckily again, we were only a few miles from a town with a hospital that serves as a regional medical center for this part of the state, so they knew exactly what to do. They did a CT scan which showed I was having a hemorrhagic stroke which the doctor said was about the size of a cottonball, they stabilized my blood pressure which was through the roof, and sent me by helicopter to the university stroke center in Louisville.
As I've said before, I'm one of the luckiest stroke survivors around. At every turn I had friends, family, and medical personnel who did exactly the right thing (except for my sister-in law, who meant well, but the emergency room doctor said it was a darn good thing I refused that aspirin), especially my wife, who took control of me then, and for the next several weeks. I was lucky I didn't wreck the car and injure my family or anyone else, in fact I never really lost consciousness, and wasn't very worried about anything, although my wife sure was. It wasn't until much later that I learned that the kind of stroke I had has a mortality rate that approaches 30% and only 20% of survivors are able to achieve what's called functional independence. Luckily, I was one of the 20%, not the 30%. Lucky, lucky, lucky.
Tuesday, April 23, 2013
A Minor Scare at Work
I knew little about strokes and their effects until I had one. I suffered very little cognitive damage, but one of the things that I discovered during my research afterward was that having a stroke puts us at increased risk of dementia, and being that I'm 61 almost 62, that's something that worries me, and I find myself looking out for signs that it may be beginning. Which brings me to what happened today at work: nothing major, just a worrisome occurrence.
I am in the middle of coordinating the development of six new units of rental housing targeted at individuals with severe mental illness. We can't just select the region where the units will go, we have to issue a Request for Proposals and let agencies out in the state request that the units be built in their region. A very bright young woman at work is responsible for coordinating the preparation and publication of the RFP, and this morning she sent me a draft to review. Everything looked fine, except that the date at the top was May 26, 2013. I e-mailed back and asked what that date represented, and she responded that she thought we had agreed that the RFP would be published this Friday. I responded back to her and wrote, "Yes, April 26." She responded by asking if I wanted to change the date of publication of the RFP, and if so to let her know as soon as possible.
After a few more back and forth e-mails of the same type, I was worried. There was something I wasn't getting here. I pulled up my Outlook calendar and looked at the date, and the months. Sure enough it was April now with May to follow. So what was going on? Was this it? Was this the first sign of the dementia that would soon render me incapable of functioning out in the world? Or maybe this was the first manifestation of damage from the stroke that hadn't been revealed before. Maybe it was an undiscovered dead area of my brain that dealt with dates of publication of RFPs. After all, all strokes are different, as I have read so many times. With these gloomy thoughts in mind, I called her, confessed my confusion, and requested clarification. "Oh, did I put May?" she said. "I'll change that now to April. Sorry."
So, evidently, I still know what month it is, and the dementia isn't here yet. I'll keep an eye out for it, though, and hope that the mental activity of working helps keep it at bay.
I am in the middle of coordinating the development of six new units of rental housing targeted at individuals with severe mental illness. We can't just select the region where the units will go, we have to issue a Request for Proposals and let agencies out in the state request that the units be built in their region. A very bright young woman at work is responsible for coordinating the preparation and publication of the RFP, and this morning she sent me a draft to review. Everything looked fine, except that the date at the top was May 26, 2013. I e-mailed back and asked what that date represented, and she responded that she thought we had agreed that the RFP would be published this Friday. I responded back to her and wrote, "Yes, April 26." She responded by asking if I wanted to change the date of publication of the RFP, and if so to let her know as soon as possible.
After a few more back and forth e-mails of the same type, I was worried. There was something I wasn't getting here. I pulled up my Outlook calendar and looked at the date, and the months. Sure enough it was April now with May to follow. So what was going on? Was this it? Was this the first sign of the dementia that would soon render me incapable of functioning out in the world? Or maybe this was the first manifestation of damage from the stroke that hadn't been revealed before. Maybe it was an undiscovered dead area of my brain that dealt with dates of publication of RFPs. After all, all strokes are different, as I have read so many times. With these gloomy thoughts in mind, I called her, confessed my confusion, and requested clarification. "Oh, did I put May?" she said. "I'll change that now to April. Sorry."
So, evidently, I still know what month it is, and the dementia isn't here yet. I'll keep an eye out for it, though, and hope that the mental activity of working helps keep it at bay.
Monday, April 22, 2013
Blog Title
My first thought was to call my blog Working After Stroke. But then I realized there is no "after" a stroke. Sure, there are phases: acute phase, subacute, chronic phase. I'm in that chronic phase now, and will be for as long as I live. And like any other chronic condition, it just goes on and on. So I feel as if I live my life "with" stroke, and work "with" stroke. Everything I do is"with" stroke.
Because I work full time, and have started my own company on the side, and because I am a husband and a father with a family that still depends on me, I won't have a recovery phase. I won't have years, or even months, of focusing full time on regaining what the stroke took away. After a week in stroke ICU, I had four weeks at an inpatient rehab facility, and three more weeks as an outpatient, and that's it. What I have is for the most part all that I'll ever have. The phase I've entered now is more of a compensation phase than a recovery phase - learning how to function in the world as best I can using whatever strategy I can come up with. Luckily, though, I was left with enough residual mental and physical ability that I think I'm going to be able to pull it off.
Seemingly like every other survivor, I got almost no information about my stroke, or about stroke in general, from any doctor of any type I came in contact with. I suppose they thought I wasn't capable of understanding, or retaining, anything of any complexity. During my stay in the hospital, and later in the rehab facility, I never doubted that I would walk again, regain use of my left arm and hand, drive again, and return to work. My wife, who was with me most of the time, didn't share my optimism, although she didn't let me know that. She thought I was determined to be positive in spite of the mental and physical deficits that were so obvious to her. What neither of us knew and no one told me, and what I only learned later after returning home and researching what had happened to me, was that a characteristic of the right-hemisphere stroke I had were feelings of unwarranted optimism and well-being. That exactly describes my feelings during the weeks after my stroke. I remember discussing with my wife my plans to return to work, and I remember being somewhat puzzled and disappointed in her lack of enthusiasm and what I considered lack of support.
I didn't begin to understand the reality of the situation until I asked my experienced physical therapist what was the typical time frame for one of her patients to return to work. She looked at me and said, "None of my patients has ever returned to work." That was a slap in the face that penetrated through my fog of optimism. It didn't discourage me to any great extent, though, because here I am and so far, so good.
Because I work full time, and have started my own company on the side, and because I am a husband and a father with a family that still depends on me, I won't have a recovery phase. I won't have years, or even months, of focusing full time on regaining what the stroke took away. After a week in stroke ICU, I had four weeks at an inpatient rehab facility, and three more weeks as an outpatient, and that's it. What I have is for the most part all that I'll ever have. The phase I've entered now is more of a compensation phase than a recovery phase - learning how to function in the world as best I can using whatever strategy I can come up with. Luckily, though, I was left with enough residual mental and physical ability that I think I'm going to be able to pull it off.
Seemingly like every other survivor, I got almost no information about my stroke, or about stroke in general, from any doctor of any type I came in contact with. I suppose they thought I wasn't capable of understanding, or retaining, anything of any complexity. During my stay in the hospital, and later in the rehab facility, I never doubted that I would walk again, regain use of my left arm and hand, drive again, and return to work. My wife, who was with me most of the time, didn't share my optimism, although she didn't let me know that. She thought I was determined to be positive in spite of the mental and physical deficits that were so obvious to her. What neither of us knew and no one told me, and what I only learned later after returning home and researching what had happened to me, was that a characteristic of the right-hemisphere stroke I had were feelings of unwarranted optimism and well-being. That exactly describes my feelings during the weeks after my stroke. I remember discussing with my wife my plans to return to work, and I remember being somewhat puzzled and disappointed in her lack of enthusiasm and what I considered lack of support.
I didn't begin to understand the reality of the situation until I asked my experienced physical therapist what was the typical time frame for one of her patients to return to work. She looked at me and said, "None of my patients has ever returned to work." That was a slap in the face that penetrated through my fog of optimism. It didn't discourage me to any great extent, though, because here I am and so far, so good.
My Work
I work for Kentucky Housing Corporation, and have since 1999. I have a Bachelor of Architecture degree from the University of Kentucky, and my job is to assist developers, mostly nonprofits, with designing and securing funding for housing for people with disabilities, which we term permanent supportive housing, or PSH for short. Luckily, again, I have always been a telecommuter, with my work station in my home, 130 miles away from Frankfort, where Kentucky Housing Corporation is located. Most of my job I can do from home, since I'm connected to the KHC computer network, but from time to time, I have to travel around the state to meet with nonprofit agencies to discuss their housing initiatives, then assist them if what they want to do is compatible with the mission of KHC relating to PSH. And once a week I drive to KHC for meetings of various types, and let me tell you, KHC does love to have meetings. Often I'll have two days of meetings, so I'll stay overnight in Frankfort.
So, this has been my job for 14 years now, and I love it. As in everything else, I'm lucky to have a job that is fulfilling, and challenging, and requires creativity, and consists of working with like-minded individuals, a job which doesn't pay badly and has really good benefits, and good retirement which I may or may not get a chance to take advantage of some day, and most importantly, a job that is accommodating to someone who has had a stroke.
I work in a department of KHC called Specialized Housing Resources. I'm the only one who does the type of design and consulting work I do, but all the others, about 25 staff members, administer federal and state programs of various types which benefit people with disabiliies or other special needs like homelessness, drug and alcohol addiction, HIV/AIDS and victims of domestic violence. The programs have names like HOME, HOPWA, Continuum of Care, Emergency Shelter Grant, Money Follows the Person, Recovery Kentucky, and mine, the Olmstead Housing Initiative. We all work hard, and for the most part are a close-knit group. We support each other, and I relied on them to keep my program up and running in the months after my stroke when I was, literally, getting back on my feet.
SHR, as we call our department since we do love our acronyms, has a staff meeting once a month. My stroke occurred October, 2011, and the first staff meeting I attended after that was in February. I hadn't driven that far before, so my wife, who is a teacher, took off work and went with me. There was a potluck at the staff meeting to celebrate my return, with all the food laid out on tables placed against a wall of the board room. A crock pot full of little wieners in barbecue sauce was placed under the room's thermostat, and until someone realized what was going on, the heat kept making the air conditioning in the room come on. Now, pre-stroke, this wouldn't have bothered me a bit; in fact, I prefered a cold room, but post-stroke, my internal thermostat doesn't work so good, so in spite of having on a long-sleeved shirt and a sweater vest, I soon was chilled to the core. I had to leave the meeting about halfway through, so I missed my own potluck, but my wife and I went and had a nice lunch in Frankfort. Everyone understood why I left, and several told me they were tempted to do the same. I've attended all the subsequent staff meetings, except for those that conflicted with other meetings, and I've established a regular KHC attendance schedule again. I've discovered that when you work for a big bureaucratic agency, a stroke becomes a minor blip, and that's actually been a good thing for me, because it has helped me put what happened to me in perspective.
So, this has been my job for 14 years now, and I love it. As in everything else, I'm lucky to have a job that is fulfilling, and challenging, and requires creativity, and consists of working with like-minded individuals, a job which doesn't pay badly and has really good benefits, and good retirement which I may or may not get a chance to take advantage of some day, and most importantly, a job that is accommodating to someone who has had a stroke.
I work in a department of KHC called Specialized Housing Resources. I'm the only one who does the type of design and consulting work I do, but all the others, about 25 staff members, administer federal and state programs of various types which benefit people with disabiliies or other special needs like homelessness, drug and alcohol addiction, HIV/AIDS and victims of domestic violence. The programs have names like HOME, HOPWA, Continuum of Care, Emergency Shelter Grant, Money Follows the Person, Recovery Kentucky, and mine, the Olmstead Housing Initiative. We all work hard, and for the most part are a close-knit group. We support each other, and I relied on them to keep my program up and running in the months after my stroke when I was, literally, getting back on my feet.
SHR, as we call our department since we do love our acronyms, has a staff meeting once a month. My stroke occurred October, 2011, and the first staff meeting I attended after that was in February. I hadn't driven that far before, so my wife, who is a teacher, took off work and went with me. There was a potluck at the staff meeting to celebrate my return, with all the food laid out on tables placed against a wall of the board room. A crock pot full of little wieners in barbecue sauce was placed under the room's thermostat, and until someone realized what was going on, the heat kept making the air conditioning in the room come on. Now, pre-stroke, this wouldn't have bothered me a bit; in fact, I prefered a cold room, but post-stroke, my internal thermostat doesn't work so good, so in spite of having on a long-sleeved shirt and a sweater vest, I soon was chilled to the core. I had to leave the meeting about halfway through, so I missed my own potluck, but my wife and I went and had a nice lunch in Frankfort. Everyone understood why I left, and several told me they were tempted to do the same. I've attended all the subsequent staff meetings, except for those that conflicted with other meetings, and I've established a regular KHC attendance schedule again. I've discovered that when you work for a big bureaucratic agency, a stroke becomes a minor blip, and that's actually been a good thing for me, because it has helped me put what happened to me in perspective.
Saturday, April 20, 2013
About me
Yep, it's another blog by a stroke survivor. I'm 61 now, had my stroke in October 2011. It was an intracerebral hemorrhage, a deadly kind of stroke I found out later. Of course I didn't know that at the time. If I had known, I would have been more worried about what was happening to me. The hemorrhage occurred on the right side of my brain at about the boundary of the parietal and frontal lobes. That's only my estimation, because all the neurologist told me about the stroke's location was to touch my head at a point about halfway between my right ear and the top of my head. He wasn't very communicative. A common complaint about neurologists I've come to find out.
I got lucky in the size (the size of a cottonball the emergency room doctor told my wife) and location of the hemorrhage. I say that because I experienced very little resultant cognitive or physical impairment compared to most other stroke survivors. It hasn't been a total bed of roses since that day, but I recovered enough that I was able to go back to work part-time after three months and full time after six months. Again, I was lucky in that I worked for a state agency that was very accommodating to my needs. I'm lucky, too, that I have a wife who is loving and compassionate and children who take after her. I reckon I'm one of the luckiest stroke survivors around. And I try not to take that for granted.
So, that's the reason for the name of the blog. I will write about working after having a stroke. I will write about not being able to devote full time to recovery, but rather fitting recovery in when I can find the time and energy after being an employee, being a husband, and being a father. It's a busy and stressful life I lead, but also full and rewarding. I hope others will find my experiences worthy of reading.
I got lucky in the size (the size of a cottonball the emergency room doctor told my wife) and location of the hemorrhage. I say that because I experienced very little resultant cognitive or physical impairment compared to most other stroke survivors. It hasn't been a total bed of roses since that day, but I recovered enough that I was able to go back to work part-time after three months and full time after six months. Again, I was lucky in that I worked for a state agency that was very accommodating to my needs. I'm lucky, too, that I have a wife who is loving and compassionate and children who take after her. I reckon I'm one of the luckiest stroke survivors around. And I try not to take that for granted.
So, that's the reason for the name of the blog. I will write about working after having a stroke. I will write about not being able to devote full time to recovery, but rather fitting recovery in when I can find the time and energy after being an employee, being a husband, and being a father. It's a busy and stressful life I lead, but also full and rewarding. I hope others will find my experiences worthy of reading.
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