New/Old Blog

Here is the link to my new/old blog that I started in 2011 just in time to have a stroke.  Stop by and visit sometime. http://theliberalcapitalist.blogspot.com/

Final Thoughts

We have a really good family doctor.  He's smart and informed and not too condescending by doctor standards.  Because he has such a good reputation, he's popular, meaning he sees a lot of patients, but in rural areas, that's to be expected.  He knows a lot about stroke, but even as good as he is, he's clueless about spasticity. He refers to it as stiffness, as in, "How's that muscle stiffness on your left side? Getting any worse?"

Me: "It's not really muscle stiffness, it's spasticity."
Doctor, ignoring my clarification:  "Still exercising?"

Me:  "Yep, I swim every other day, and the days I don't, I stretch and work out with light weights."
Doctor:  "Good, good.  Does that help with the stiffness?"

Me: "Not really.  In fact, in the short term it makes it worse."
Doctor: "Hmmm.  That's...odd," forgetting that I've explained this phenomenon to him several times before.

Me: "Yes it is."
Doctor: "You saw Dr. ______, the neurologist I referred you to, didn't you?"

Me: "Yes, I did."
Doctor: "Did he have any suggestions to help with the stiffness?"

Me:  "Not really."
Doctor: "Well, that's unfortunate.  Well, if it gets too bad, let me know and I can prescribe a muscle relaxant that might help some," forgetting that we've talked about this before and I've told him I'm not interested in taking a muscle relaxant.

The neurologist he referred me to last year also seemed like a nice guy, but was just as clueless about spasticity.  To check my condition, he watched me walk around his office, then had me sit on the examination table while he tugged on my left arm and leg. Now I have spasticity all up and down my left side, but it's not uniform, and it hardly affects my bicep at all, so it doesn't cause my left arm to fold itself against my chest as with so many other survivors. In fact, what I experience is just the opposite. So when he grasped my left wrist and pulled it toward him, I had to pull back in order to keep from punching him in the solar plexus. "Yes, yes," he said, "I can feel it in your arm." Similarly with my leg, I had to try to keep it bent so that my foot didn't snap up and knock his teeth out. "Yes, you certainly have a lot of spasticity in your left arm and leg," was his conclusion.

I didn't explain to him that he hadn't actually felt my spasticity where it actually was and how it actually affected me, because, really, why bother.  There's no treatment for it, anyway.  He did offer to write me a prescription for Baclofen and another for pain medication, but not wanting to spend the rest of my days stoned, I declined.

Mainly based on Dean's blog, I'm aware that there is a substantial amount of stroke research going on.  But it seems so haphazard, so unfocused and directionless.  It seems much of it covers ground already covered, making no attempt to build on work already done.  There seems to be no plan, and no entity that is providing any overarching perspective so that a coherent  strategy can be developed to solve the myriad unknowns that stand in the way of stroke recovery.  Instead, we have isolated researchers engaging in disconnected research projects, while the stroke organizations take the easy way out and focus on prevention and treatment processes so they can claim nonexistent successes.  I'm sure this approach makes for more fun conventions than would reporting on progress toward solving the complex barriers to stroke recovery. 

I sincerely believe that a group of stroke survivors could provide doctors and researchers some of the basic information about stroke that could help inform their research efforts.  But this is never going to happen. Doctors and researchers actually listening to advice from people who have had strokes?  Why the thought of such a thing is inconceivable.  What might happen after that?  Medical professionals paid for results instead of as an entitlement for having a medical degree?  Chaos, I tell you, the upending of the natural order.

So the state of stroke recovery seems hopeless, with the only useful information being provided by Dr. Google and the many smart and informed stroke bloggers.  I admire you all, but my time as one of you has come to an end.  My blog was about someone who had a stroke who was working.  But at some point in the last four years I became someone who was working who had a stroke - a subtle but significant difference.  There are still contributions I want to make and goals I want to reach in the time I have left.  One of my goals is to get back to the blog I had started prior to my stroke.  It's called The Liberal Capitalist, so drop by there and say hello sometime.  Be well, do good work, etc., etc.

Fear of the Dark

I don't fear too many things, but I do have one big one that I suspect most stroke survivors share:  spending the last years of my life in a nursing home.  Members of the stroke tribe have had a taste of what that's like in ICU and inpatient rehab.  I have vivid, and very unpleasant, memories of wearing a diaper; of being told when to wake up, when to eat, and when to take therapy.  I remember the professionalism of most of the inpatient rehab day staff and the very nonprofessional attitude of some of the night shift workers. I remember once being parked in front of the television in the day room and forgotten until I became sick and had to ask a visitor to take me back to my room.  I remember calling for a night nurse to take me to the bathroom, then waiting so long that I wet myself before they came for me.

Like most people, though, my stroke was not my first experience with a nursing facility. I had been in nursing homes several times to visit elderly relatives, and in every one of them, there were unfortunate individuals who spent their days in beds or wheelchairs, loudly calling out over and over and over.  Their messages varied to some degree, but they were always an appeal for help of one type or another.  In one place there was a man, who for some reason known only to himself, desperately needed one more plastic cup.  In another, a woman who needed help with the children that only she could see.  And several who just needed someone to get them out of the place where they were and back to their homes.  The staff of the nursing homes had heard the constant pleas from these individuals for so long that they had  become oblivious to them.  Some filtering mechanism had kicked in that enabled them to suppress the distractions and to calmly go on carrying out their duties. I thought of these individuals as people who, in a sense, had been buried alive. 

I pitied these poor souls whose needs seemed so desperate, but were destined to never be fulfilled.  Then, when I had a stroke, I became one of them.  My hemorrhagic stroke occurred in the afternoon, and that night I was in the stroke ICU of a university hospital.  At some point late that night I was awakened by a cacophony of noise: wheezing, squeaking, banging, clanging. All around me was dark, so that I couldn't see what was causing the noise, but it was overwhelming in its grating volume.  Even though I couldn't see anything, I knew that my wife, Polly, would be there with me. So I called out for her to stop the noise, and got angry when she didn't respond. I remember thinking how could anyone be so rude as to make all that racket when I was so tired and sleepy. I called out to Polly in the dark over and over asking that she stop the noise so I could sleep, but she never responded.  Later I learned that she actually had, but even her voice couldn't penetrate the darkness.

By the next day the darkness had lifted, and in the days that followed, I realized that the noise I had heard consisted of the sounds of the ICU as interpreted by my injured brain.  The muted sounds of carts and beds being pushed in the halls and the gentle whoosh of the pressure cuff wrapped around my feet became the hellish noise of a crazed lunatic band. I also realized that my room wasn't dark at night, only dimmed so the staff could go about their work.  I wondered if I had really called out to Polly, or if that, too, had taken place only in my fevered dreams.   I was surprised when Polly told me that she had heard me call out to her to stop the noise, but not being able to hear anything herself, and after my pleas to her turned into demands, she left the room and found a quiet place where she could cry in peace over the day's events.  The staff had ignored me.

It's this darkness that I'm afraid of.  Not the darkness of night, but the darkness of a mind that's shutting down and has trapped a still living person inside.  A person that can only call out for help in the darkness. My darkness lifted that time, but what about when the time comes when it doesn't.  What about when I'm the one buried alive and there is no one that can save me.  That's the darkness I fear, and because I've had a stroke, chances are that's the way I'll end up.  How can you live with that knowledge?  You just do.

Damn escalators

I hate those evil mechanisms. I didn't care for them much before my stroke; now I hate them with a passion previously reserved for such things as heavy metal music and Dennis Miller. 

It didn't take me long to get a client for my company Living At Home LLC.  My first client is a state agency.  Not the one I worked for, but another one that I worked with on a peripheral basis. Luckily, I've always been pretty good at networking, and that is a valuable skill when starting a business.  The agency that is now my client has operated a program for years that uses state funds to assist individuals with disabilities with making accessibility modifications to their homes.  Common projects are ramps, bathroom and kitchen renovations, and room additions.  Overall program oversight is provided by a council of advocates and professionals, and I served on that council for many years.  So, when I announced my retirement and asked agency staff if they would be interested in having me work with them on a contract basis, they were receptive. 

My contract started July 1 and I am providing design assistance, help with funding application review, and project monitoring.  The budget has been cut over the years, so I will be splitting my time between two separate programs.  They are both very worthwhile, serving households that really need the help.  I'm going to be busy, but I'm looking forward to it.

Which brings me to the escalator.  Tuesday I had a meeting in Frankfort with agency staff to discuss my activities for the coming fiscal year.  It was a very pleasant meeting, with everyone excited to have me on board to provide some of the technical assistance they have been lacking.  One of the staff members walked out with me, which entailed going from the third floor to the first.  He is a nice young man, healthy and able-bodied, so he led the way to the escalator. Now, it didn't take me long after my stroke to learn that escalators are problematic.  I go up them okay, but going down is a different matter.  My down technique is to balance on my good right leg and let my affected left foot hover over the steps as they come out at the top and make their descent.  I then summon my courage and drop my foot on a step and hope that it lands in the middle and not on a leading or trailing edge so I have a relatively stable foundation I can use to bring my other foot down. To compound the problem on this day, the escalators in the state government building where we met are narrow and steep. The building is going on 30 years old, and I don't think they would meet code today.

I almost told the young man that I preferred to take the elevator, but he was talking enthusiastically about my activities in the coming year, so I let my vanity get the better of me and with my arms full of documents and a raincoat, I followed him down the escalator.  Because I was trying to carry on a conversation with him instead of focusing on what I was doing, I didn't follow my down procedure, and instead unthinkingly stepped on to the escalator with my right foot, which left my affected left foot still on the landing.  I couldn't lift it fast enough to catch up with the other one, so my legs kept spreading, my right foot going down, my left foot staying in place.  The only thing that saved me from toppling head first into my companion was that the narrowness of the escalator enabled me to place both hands on the moving rails on each side.  Even though my hands were full, I could still balance myself until I could drag my left foot off the landing and down the stairs until it reunited with my right one. When we got to the second floor, he said, "Maybe we should take the elevator to the first." I agreed.

So, disaster averted, and I'm looking forward to both being retired and seeing how large I can grow my business.   Just goes to show that you are never too old for a new chapter of life, and new, exciting possibilities can be discovered even after a stroke.





 

Retirement

I retired the first of April.  Up until then I had imagined I would keep working as long as I felt I was making a contribution.  I was never one to distinguish much between work and not-work.  Since I enjoyed my profession, thought of it as part of who I was, and it was something I viewed as making the world a slightly better place, why stop doing it?  Of course we all know what they say about our plans.

The agency I worked for had been changing steadily over the past few years, and not for the good.  It was not the same place as sixteen years ago when I started.  Over that period there was a steady storm of cuts at the Federal and state level to programs that funded what I did: assist developers with designing and developing housing for people with disabilities.  This was the most difficult to house population, and the most expensive.  So when state and Federal budgets were cut, programs that targeted this population suffered the most.

The budget cuts precipitated a phenomenon I think of as the agency death spiral, kind of like the neuronal cascade of death.  In response to cuts in program funding, management did not become creative in finding new products to serve new customers, but rather cut programs back to fit the new, reduced funding levels.  Once this started to happen, staff that didn't agree with this strategy started to leave and staff that only cared about a paycheck stayed, and the agency became even more risk averse and committed to serving safer, more affluent populations, prompting more good staff to leave, and on and on until my personal tipping point was reached and one day I realized there was no one left who remembered why I was hired, or cared enough about special needs populations to fight for them. So I announced my retirement.  They wanted to have a reception for me, but I declined.  I didn't trust myself to not make some comments to some people that I would regret later. 

This work is part of me, though, so I will continue to do it.  I have created a company, Living At Home LLC, to provide design and construction management services for residential accessibility, energy conservation, and hazard remediation.  Essential elements for allowing individuals as they age or experience illness or accidents, to continue living at home (get it?).  My website is at Sparks Architecture.  I have a particular interest in the design of accessibility solutions for older homes in urban settings, which means my clients, in contrast to my career up to this point, will be well-to-do.  I hope there will be funds available to make housing accessible, affordable, and safe, for low-income Americans, but the way things are going I'm not optimistic.

I would be remiss if I didn't go a bit further, knowing I'm going to offend some, but I've never approved of people who criticize government actions without differentiating one party from another.  The cuts in programs that fund housing for the poorest, most needy Americans that have occurred continuously over the past 15 years have been perpetrated by Republicans, and would have been worse if not for the objections and opposition by Democrats.  And what makes it even worse in a state like Kentucky is that a majority of poor and disabled adults vote for Republicans, and the more they vote for them, the more the programs they rely on are cut.  In my nightmare imaginings I see the last poor, disabled person left alive in the state, staggering out of the last homeless shelter, carried into an inaccessible voting location, and voting for a Republican who has promised to close that last shelter.  So, I have retired.  I admit defeat.  I no longer have the energy to rage against the dying of the light.

Good Pain Bad Pain

This morning when I got out of bed and walked to the bathroom, I experienced a feeling that most stroke survivors don't get the chance to feel: sore muscles.  I'm not talking about painful muscles - I'm talking about the good kind of soreness that comes from overworking your muscles doing an activity you enjoy. Yesterday was my every-other-day trip to the Y for swimming.  I go after work, so got there around 6:30 and after a short warm-up, I decided to exert myself a bit more than normal.  I'm not actually able to swim laps, that is up and down and up and down without stopping.  Instead, I start in the shallow end and swim to the wall at the deep end and back to the wall at the shallow end, rest for a few seconds, then swim up and back again.  I do this ten times.  Not much of a workout by swimmer standards, but it tires me out.  Yesterday I felt strong, so decided to stroke faster and rest for a shorter period.  I followed through on that plan, and woke up this morning with sore muscles in my shoulders, back, and hips.  It was a great feeling.

There were regular Y swimmers in the lanes on both sides of me.  On one side there was a hefty guy who beats through the water with a measured polar bear chug, and on the other side a woman with a long, graceful stroke that indicates she may have swum competitively at one time.  My stroke, on the other hand, is strictly homemade. I do okay with my right arm and leg, but to stroke with my left, affected side, I roll over on my right and sort of throw my left arm forward.  As I've come to believe is normal with stroke survivors, no type of coordinated movement can be made unconsciously as we did in the past, so I have to remember to occasionally kick with my left leg.  Otherwise it trails along behind me.  With a lot of practice, though, I manage to go forward, albeit slowly. I've thought about asking Polly to video me swimming, and posting it here, but I really don't want to see how I look.

I'll be eternally grateful that my stroke left me with the ability to do so much - swimming in particular. Because of the spasticity on my left side, I can't run, or even walk very far or very fast, and while I do have a stationary bike, it only works out my legs. Only swimming lets me feel like I felt before my stroke: sore and tired in a good way.

Stroke Support Group

A year after my stroke I decided to start a stroke support group in our town.  Being an introverted person with a demanding job, I really didn't want to do it, but as a stroke survivor who had escaped more or less physically and mentally intact and had learned a great deal about stroke after the fact, I felt an obligation to help in any way I could those who were trying to navigate the great dark unknown of stroke recovery. 

Our town has a hospital that serves as a regional medical center for surrounding counties, but I had participated in a stroke support group in the inpatient facility where I had rehabbed, and had found it boring and uninformative, so I decided to form one that was independent of any institution.  Fortunately, the leaders of our church were enthusiastic about the idea and offered the use of a community meeting room with tables, chairs, and a kitchenette.  They even made sure the group's location and meeting time were publicized in the community news sections of the local newspaper and radio stations.

So at six p.m. on a Tuesday, Polly and I opened up the meeting room, set out brownies, made coffee, and waited.  One person showed up.  Her sister had recently survived a stroke, but had suffered significant physical and cognitive impairment that included aggressive, combative behavior.  Her husband had put her in a local nursing home, but her disruptive behavior had led to her being kicked out, and now she was in a smaller nursing home in another county that offered no therapy programs. 

Polly and I listened to her and sympathized, but neither of us had any useful advice to give, so after an hour she left with the leftover brownies.  We kept the support group going for another six months, but no one else came.  I was disappointed, since dozens of people in our town had strokes during that period, including several in our congregation, and I believed that Polly and I had useful information to offer survivors and caregivers. 

Later on, though, I thought more about it and decided that it was for the best that the support group hadn't succeeded.  The reason I had started it was to offer advice about stroke recovery beyond the platitudes and clichés offered by stroke professionals.  But could I have been so honest?  Could I have punctured the optimism of recent stroke survivors and their loved ones by telling the truth as I've come to know it? 

Could I have told a woman whose sister was in the same situation as the woman who came to the support group that her sister's situation was bad and would only get worse?  Could I have told her that unless someone in the family was wealthy enough to pay for her sister's care that the only option for her was a facility that accepted Medicaid and would accept anyone, no matter their condition, and in such a facility she had no chance of ever improving and the best they could hope for was that she wasn't abused before she died a quick and peaceful death.  No, I couldn't have said that, but it was what I believed. 

Could I have told survivors that if they couldn't use their arm, they almost surely never would; that if they couldn't walk, with a lot of work and the use of AFOs, canes and walkers they might sort of be able to, but not the way they envisioned walking.  Could I have told them that they likely would never work again, or probably never drive again. 

Could I have told caregivers that if their loved ones had significant cognitive impairment, it would probably always be that way.  If they couldn't eat a regular diet, they probably never would be able to, that if they were impatient and abusive, they probably always would be.

Could I have said all that?  No.  Maybe if I ever try a support group again, I'll name it a Stroke Reality Group and issue a disclaimer saying that attending could lead to disappointment and depression and hope that I get lucky again and no one comes.