The following is an accounting of my experiences and ongoing recovery from two strokes. At first I wrote this for myself, not wanting to forget how fortunate I am just to have the ability to do this. Then I decided to send it to friends, some of whom suggested that it could help someone with encouragement so I decided to post it on the Web.
Strokes are nasty, life-altering events at best. What a person does to be proactive with recovery during and after hospitalization depends partly on the severity of the stroke and the degree of functionality left from it. The rest is dependent on the individual, and their attitude and desire to recover. There are no guarantees of the amount of recovery possible. But to use that as an excuse not to try is to look for reasons to give up and take the "easy way". All that will accomplish is minimal recovery and a lot of difficulty every day.
My first stroke was on May 17, 2007. (before in 2007 - after in 2010) A blood clot in the right side of my brain was the culprit. When I got up that morning arthritis in my left knee was giving me some grief so I took a couple of aspirin to alleviate the pain (the doc told me that the aspirin probably saved me from the stroke's effects being much worse). As the day progressed I was feeling weaker all over, as if I was coming down with something.
That evening I was supposed to play a concert. I figured I could do it because I had played many times when I wasn't feeling good, with no problem. This time I was able to play the first half but I was too weak to walk back on stage for the second half. On the way home the stroke finally made itself known by manifesting itself in my left side. Fortunately I had carpooled with friends.
Until I had that stroke I had always thought that it was an event where you could pinpoint the exact time at which it occurred. This one took about 18 hours to make itself known. Since then I have come across quite a few other people whose strokes didn't manifest themselves for hours.
When I got home my sister took my blood pressure and it was 244/120-something. We discussed it briefly and decided to go to the hospital right away. I was so weak that it took three people to help me to the car but I was fully aware of the day's events and what was happening.
I was admitted to the hospital and it was determined that I am diabetic along with having hypertension. Some would classify me as a "borderline" or "pre-diabetic" but in my book there is no such thing. Either a person has diabetes or they don't and it doesn't magically go away. With diet and exercise individuals can control blood glucose to the point that insulin and/or other meds aren't needed, but the diabetes is still there. All that has to be done for proof is to not make the necessary lifestyle changes and watch the progression of diabetes. Right now I don't take diabetic meds because I made permanent changes to my lifestyle and it paid off. Someday I may have to take insulin or meds as diabetes progresses, but as long as I can prevent it through my lifestyle, I will.
Ultrasounds were performed on my heart and arteries to assess any blockage and it turned out that I have none which was a tremendous relief. They let me watch the screen and I must say it was quite an experience to actually watch my body working in real time. Cholesterol isn't a problem for me. It tests consistently between 100 and 150. I've always kept an eye on how much cholesterol I take in but I never knew my levels or to what degree blockage (if any) was happening.
About three weeks later I was discharged from Kootenai Medical Center's (KMC) rehab unit where I had extremely good care and lots of physical and occupational therapy. My blood pressure and glucose were well under control. I was doing pretty good, walking with a cane. I was able to function normally as I regained my strength and abilities. I went back to work after a few months and eventually I was walking without a cane. My left side was a bit weak and uncoordinated but with work and patience it was getting much better. It seemed that between meds, dietary changes and exercise I was well on the road to recovery.
I went through three months of outpatient therapy at the McGrane center after KMC discharged me. It was pretty intense and I learned a lot more about what and how to exercise for recovery. I left there with the tools and confidence that while I may not fully recover, I had a good chance of working my way to a decent level of functionality.
I had some issues with side effects from meds for awhile. After my discharge I started working with my new doc to lessen the side effects. Sometimes I felt like I was a walking side effect. Some meds I acclimated to quickly and others I didn't. I was on a very light dose of Metformin. I had bowel problems constantly and it never got any better. As it turned out, my sister and my mom both had the same problem with it. At the time there was what sounded like a promising new med called Januvia. The doc suggested that I could try it as a replacement for Metformin. I said I'm game, which was a mistake. I ended up sick and missing about 8 days of work a month for about 3 months. I was experiencing nausea on a scale I never imagined possible. I went along with it hoping I would acclimate to it but it never happened so he finally stopped it. I was losing weight and working out as much as possible. My glucose levels were decent so we didn't go back to diabetic meds which was great. My lifestyle changes were starting to prove their worth in spades.
Next up was Catapres, which was a very nasty med for me. Every day I was useless for about 4 hours and several times a week I was nauseated. When I researched my meds I found out that Catapres is more of a drug to be used in the ER and for the short term, not long term. This was consistent in all of my research. At this point I had been on it for 6 months. When I talked to the doc he didn't seem to care about the side effects. Finally I became insistent that we try something else in its place and he gave me a schedule of decreased doses until it was safe to stop it entirely.
A day after my last dose of Catapres I became very ill. Chills, nausea, vomiting and headaches were hitting me hard. I figured I must have caught something, but then I researched it and found out that one of the problems that could be encountered when discontinuing it was withdrawal. I called the doc and asked if there was some reason he didn't warn me about the possibility of withdrawal and the answer was "it doesn't happen to everyone". I lost a lot of confidence in him for that lackadaisical response.
I gave him a written request 3 weeks before my last appointment for him to consider alternatives for the Catapres since that hadn't been done. My faith in him as my physician was starting to wane. He acted like it didn't matter how I felt or how much work I had to miss as long as I looked good on paper. When he walked in the exam room at my final appointment, he asked what the purpose of my visit was and I almost fell off my chair. It became blatantly obvious that this was not the physician for me so I never went back to him. Meanwhile I was feeling pretty good about my health since the weight loss was going well, my blood pressure and glucose levels were good. I had enough refills to last me several months while I looked for a new doc.
Fast forward to Sept 16, 2008. About 6 am, I had my second stroke. This one made itself known very quickly. I was in the bathroom at the time and I noticed I was drooling. I reached for a piece of tissue but I was unable to close my fingers to grab it. I knew right then that something was very wrong and that it was most likely a stroke. I called out for help and my sister called 911. The paramedics arrived in minutes but those were the longest minutes I had ever experienced. I believe I lost consciousness at least twice in the ambulance but I don't know for sure as my memory of the ambulance ride is very sketchy. I remember thinking, "So this is it".
The next thing I remember is being in the ER with my sister, then being wheeled somewhere (for a ct scan?), then I believe I slept until sometime the following day. Sometime during the next couple of days a speech therapist came by to assess my needs in that area. As it turned out, she had worked with me when I had my first stroke. She gave me a handwritten list of exercises to practice that day that I posted within reading distance on the wall of every room I resided in for the next 6 months. I still have that list and use it today.
The doc said this 2008 stroke was a hemorrhagic stroke, where a blood vessel in the left side of my brain started bleeding. This was due to labile hypertension, where the blood pressure can peak for no apparent reason at any time and it can be very difficult to diagnose since it doesn't necessarily peak often. This stroke affected my right side. Although the second stroke hit me much harder than the first one, I've gotten more function back than I did from the first stroke. I'm very fortunate because a lot of people don't survive this type of stroke. The doc explained that as the brain's swelling goes down and as the blood is reabsorbed into the body, functions can return. But there are no guarantees and it's a lot of hard work. Quite possibly the hardest, most focused work a person will do in their lifetime.
There were effects of this stroke that are taking some getting used to that I'm not sure will ever happen. For instance, there is tingling with some loss of feeling in parts of my left side that have been there since my first stroke that I got used to before my second stroke. Since my second stroke these are more pronounced. When I get sleepy or physically tired they become much more noticeable. Once I'm rested things are back to normal ("normal" being the way things are for me post-stroke, which isn't normal at all).
These days my glucose falls between 75 and 110 and my blood pressure reads anywhere between 96/64 and 117/78, with the lower readings being the most common. In May, 2007 I was a porker at 247 lbs at 5' 6" tall. July 25, 2009 - I'm on cloud nine, having reached my initial goal of 160 lbs! 87 lbs lost... it's a great day! I was 170 lbs in the center of the before/after pic linked at the beginning of this account of my stroke experiences. The far right pic I was 147 lbs - I had reached the century mark!According to the book my ideal weight is between 125 and 155. Maybe I'll get smaller than 160, maybe not, depending on how muscle weight I gain from working out. I'm trying to regain some of the bulk I've lost on my left side so we'll see. Either way I have made this good lifestyle change permanent.
I'm extremely fortunate and lucky that I've come this far. I've had to learn to swallow, to talk, to write, to walk, shower, shave... even to dress myself and brush my teeth. When they accepted me at the KMC rehab center, an occupational therapist was assigned to my case to wake me and work with me to learn to get my clothes on and the other things a person does first thing in the morning. You can imagine my surprise and joy to see the same one who had worked with me in the same way during my rehab from the first stroke. At first my right side was effectively useless and while my left side was weak I could still use my left hand for eating. I'm right handed and I couldn't even hold a fork or spoon with that hand. When I was in rehab in 2007 my other occupational therapist insisted that I eat with my left hand to help build its coordination. That talent sure came in handy. People would try to converse with me the first week but my end was mostly incoherent babble, which I had no way of knowing at the time.
In my first few weeks at KMC (2008) I became severely malnourished because I was unable to eat anything but things with the consistency of pudding. Even the graininess of puree gave me difficulty in a big way. Anything else I tried to eat would choke me because my swallowing function was really messed up. I didn't even want to try to eat, it was so difficult.
My memory of those few weeks is fragmented, most of it being like looking at still pictures with not much in the way of being able to remember whole scenes or conversations. I remember that a lot of old and new friends called or stopped by but there are only vague memories as to who they were or what was said. I often wonder if the memories I have are actually my own or if not, how much are images of what those taking care of me, friends and relatives have told me. I know of several friends who said they couldn't understand my babble and they were amazed at how much my speech improved over time. It's not perfect even now, but as long as I take my time and prepare my sentences I can be easily understood. Apparently my voice sounds more normal to others than it does to me.
When I was transferred to KMC's rehab unit my condition kept getting worse. I was accomplishing almost nothing in therapy. I was given a modified barium swallow test and the result was not encouraging. Shortly after, my nurse told me about a "PEG" tube that they wanted to install to pump nourishment directly into my stomach. I told him yes, to do it. Then he asked if I would let them install a temporary tube through my nose so they could get the feeding started immediately and again I said yes. I remember coughing a lot when they put the tube up my nose and that they had to try again, that time successfully.
On October 1 the PEG tube was installed, just below my ribcage. Though it only fed me for a week or two, it had to stay in for 6 weeks before it could be removed (I'm now the proud owner of what appears to be a second navel, only higher). The tube had to be cleaned once every 8 hours even after I stopped using it. People said to expect something akin to a hard punch in the stomach when it was removed but I felt nothing more than a small pinch. I found the PEG tube to be quite annoying because it flopped around and would get in the way when showering, etc. But, if they hadn't installed the PEG tube I fear that this would have had a not-so-happy ending. I would remind myself of that so I would be more patient as I looked forward to its removal.
With the tube in I went to bed about 5 pm to start the overnight feeding process, continuing for about thirteen hours. During the day I would be fed twice and my meds were administered via the tube. The tube food caused me some bowel distress but that was taken care of quickly enough with meds. The tube food is fiber-intensive and is famous for causing bowel problems.
The first week of tube feeding found me attempting to do physical therapy without much success. The rehab doc expressed to me that there was a lot of concern over my lack of improvement. After that first week my nutrition was getting back on track. I was able to do the things the therapists wanted and my recovery took off like a rocket. The speech therapist worked me hard to master swallowing and speaking. Soon I was talking and eating solid food (drinking came a bit slower but I can drink ok now), dressing myself, brushing my teeth and even (to a lesser extent) learning to walk with a walker. Nine months later I'm still doing the speaking exercises along with all the physical and occupational therapy exercises I was given.
An interesting effect of being fed with the PEG tube was that eating (and tasting) food became unimportant to me. Eating was very important when I was able to eat normally but when eating food became a danger, eating food suddenly lost that importance. While I was being fed through the PEG tube, I was never hungry and I had no interest in eating. Even at mealtimes when I could see and smell the food there was no interest. For awhile I was prepared to accept the PEG tube as a new way of life if necessary. Fortunately for me, my speech therapist kept working hard to teach me how to swallow again, safely. Today it's not perfect but I'm not having aspiration problems so no complaints.
Apparently I was having trouble urinating right after I was admitted so a catheter was installed that remained for a few weeks. When it came out I was fine for a day. Then I felt something strange, looked in the commode and saw lumpy things I had never seen before. I didn't know what to do except grab the doctor and show him. He had almost no reaction and said they'd have it tested for a UTI. I didn't even know what a UTI was at that point and no one seemed too concerned so I asked about it. They said UTIs are pretty common after a catheter comes out so I calmed down. They gave me an antibiotic and the infection was gone in a day or two. I sure had a lot of learning experiences this time around.
When I was first admitted to KMC my right side had almost no feeling at all. One day after therapy I laid down to rest and I realized that I could feel things in my right leg, foot, arm and hand. The nurse got the doc to check me over. He poked around my right side with a needle and he tested with just pressure. I got quite a bit of the feeling back that day and some more has come back since then. I don't know if the rest will ever come back but I'm grateful to have any.
The next day more feeling returned that included pain in my right ankle. I had been in the midst of an attack of gout when I had the stroke but I had forgotten about it until then. I couldn't put any weight on it so the doc prescribed some hefty anti-gout meds and the next day it was responding nicely until the gout was gone.
The day before I was discharged from the KMC's rehab group, it was confided to me that when the therapists first tried to stand me up in the parallel bars, they were convinced that I would never walk again. Fortunately they didn't give up on me and neither did I. By the time I was discharged from KMC I was able to transfer from my bed to a wheelchair and from the wheelchair to a regular chair or toilet unassisted. These days I use a cane for the most part but I still use my walker for when I need to go to the bathroom in the middle of the night when I'm groggy. I also use the walker when I feel it's needed for long jaunts to the store and such.
Emotional Lability (not to be confused with liability) is a condition that is an effect from my stroke, where I can laugh or cry at any point in time, for no apparent reason. It increases the intensity of emotions and reactions as well. Effects were sometimes lasting as long as an hour or more when my KMC doctors discussed it. They put me on a med that allows me to regain control in as little a few seconds. I wasn't used to not being able to control myself, which only made it worse. As with regaining motor functions, this condition may correct itself over time. Already the doc has decreased my dosage 33% but again, as with everything stroke-related, there are no guarantees.
I had been in KMC for 5 weeks when my discharge came on October 20, 2008. At that point I was able to talk, swallow and drink somewhat normally thanks to the persistence of an amazing speech therapist at KMC's rehab center. She has a special talent for working a patient hard and intensely without the patient realizing just how hard they're working. The hospital arranged for me to go to LaCrosse Health and Rehab center for more therapy. KMC wasn't confident that I was strong or stable enough to use my walker so I was admitted to Lacrosse in a wheelchair. At that time I had no idea how long my stay would last or what to expect for therapy.
When I got my first look at Lacrosse I thought I was being dumped into in a convalescent home. The halls were lined with what appeared to be very ill people all in wheelchairs. I saw no one who looked anywhere near my age (56). That first week was a very trying time for me for obvious reasons. As I watched the nursing staff and therapists, I realized that this really was a rehab center but to succeed I'd have to focus 100% and depend on myself entirely to get better. I was determined not to let myself become accustomed to using a wheelchair because I prefer walking even if it's not as fast or as comfortable. Someday I could be confined to a wheelchair but for now I'm not and I'll do anything and everything to continue to stay on my feet. I had a tremendous amount of support from everyone I came to know at Lacrosse when they saw how hard I was working. I was (and still am) willing to do whatever was necessary to aid in my recovery.
I had problems with vomiting nearly every night at first. I was told that it was a "bug" and that it would go away. The strange part is that it was dry heaves and that was really unpleasant. Since I've been on my own I found out that vomiting is an effect of stroke that usually stops as the patient improves. This lasted consistently until after Thanksgiving and gradually decreased until it stopped around early January.
Unfortunately during most of my stay at Lacrosse I was effectively isolated from my friends because I didn't have a laptop and my computer setup was too big for my room. There was also a policy of only one telephone line per room and no Internet access as a result. My roommate had been a resident at Lacrosse for some time. With that in mind, it would have been grossly unfair to ask him to be my personal answering service. I had no access to email for almost 6 months but thanks to my sister and her email, a lot my friends knew what happened to me. My last month or so I was able to obtain Internet access for short periods but I found that a cell phone was a better solution for me.
During my stay there were quite a few times when I found myself wondering if I'd ever be discharged. When those thoughts would pop up I put them out of my mind quickly. Two things I refused to do were to start feeling sorry for myself and to let thoughts pervade my mind that would hinder my recovery in any way.
In my first week at LaCrosse I told my physical therapist about my goal. Upon my discharge, I wanted to walk out unassisted, or at the very least, walk out using my walker. I'm very, very happy to say that I walked out of Lacrosse unassisted on March 31, 2009, after 5 months, 11 days and after many, many hours of hard, draining workouts and therapy. Did I mention how happy I was when I left?
These days I walk unassisted as much as possible at home. My gait isn't fast or pretty, but it works. I use my walker for long walks and my cane for shorter distances, but I can hold my own fairly well walking without either as long as I'm careful (again, at home). I'm not fully recovered by any means - recovery is my lifelong project - but I'm good enough to get along by myself in my own place. There are no words to describe how I feel except to say I'm one of the most fortunate people on the planet for having been able to come this far and for having hooked up with some of the best, most encouraging and helpful therapists, aides, nurses (both at KMC and Lacrosse), relatives and friends. I'm even more fortunate for having survived this with my mental capabilities intact.
As I write this I am sitting in my apartment that I've been living in since 4/1/09. I have a new doc that listens to patients and cares about them a lot. He has a knack for explaining how things work for a stroke patient. He doesn't mind questions a bit and never seems like he watches the clock when he's with a patient. I'm acclimating to my new environment quite satisfactorily.
This apartment seems made to order for someone disabled. I used to complain quite a bit about having had to stay at Lacrosse for so long. The fact is that without all that time for therapy, working out, and the care and encouragement of the nurses and other staff, I wouldn't be nearly as strong or capable as I am now. To put that in perspective, I do well in my home environment but when I go to the store or when I walk outside I still find myself getting very tired. I'm sure part of that tiredness is due to having to watch out for those people who don't pay attention to their surroundings. I've had many close calls where people look at me and rush to get around or ahead of me without thinking that such carelessness could cause a person to fall.
In early July, 2009 I managed to fall down for the first time since my second stroke. I always refuse help from people in the interest of my recovery. I stepped off the curb leading with my right foot instead of my left, making me slightly unbalanced. I fell backward onto the curb and rolled to the left. I was lucky and only had two injuries; a small bruise just below my left elbow and my ego. It's a good thing I paid plenty of attention to my therapists, otherwise this could have been a disastrous fall. I thought it was funny that this occurred when I was on my way home from a therapy appointment. My driver was really distraught about it and I felt bad because it was my own fault, so I apologized to her profusely and told her that I wouldn't be quite so doggedly independent in the future. That's what I get for being so headstrong. Now I actually allow myself to be helped once in awhile even though I still prefer doing things for myself.
So far living on my own is a breeze. Ok, not a breeze but it sure is nice to have some peace and quiet. And I haven't heard Mary Had a Little Lamb once! (At Lacrosse it played frequently as an alarm if someone got out of bed that was being monitored). This apartment house is for 55+ aged tenants. It's a security building and quite comfy. It's a 1 bedroom, about 500 sq ft. The kitchen is very small, making it hard to fall down. I'm on the end of the building so it's a corner apartment with two large windows in the living room for lots of sunshine. Outside one window the view is of a small forest. I have only one wall that is common to a neighbor and my apartment is within 10 feet of the building entry. This apartment suits me perfectly.
My first few weeks on the outside were fun-filled days of putting things away. My couch arrived and that was the last piece of furniture I needed. My friends have been most accommodating and supportive. I never expected to be showered with help like this. They have given me a dresser, a bed, couch, rocker, table with two chairs, an entertainment center... plus the staff at Lacrosse gave me going away presents in the form of much needed household items. I surely did not expect anyone to jump in and help me like that with such selflessness. Speaking of which, my sister and brother-in-law went to see me almost every day that I was in the hospital and LaCrosse, they did my laundry when necessary (usually twice a week), and they saw to it that I had new personal items when needed.
As a disabled person (I prefer to think of myself as retired, the hard way), I qualified for certain short-term benefits in the form of home visits for physical and occupational therapy, both of which helped me to adjust to my new environment and to work out solutions to living with my new weak and strong points. I've also been able to get some outpatient physical therapy which is great, along with more occupational therapy to work on fine motor skills and such.
I can't say enough about the importance of therapy and the guidance of therapists. A good attitude and cooperation are foremost in having successful therapy sessions. I have had the good fortune of working with a lot of therapists and there's not one from which I haven't learned important techniques and exercises. I've heard about people being afraid of the pain from therapy but I have yet to come across a therapist who enjoys seeing their patients in pain. Sometimes it hurts to stretch a tight muscle or to straighten a tight joint, but it's necessary to get that part working again or to assess the patient's need. There are certainly no guarantees when recovering from a stroke, but to not even try because of pain is to sentence one's self to not using that skill effectively or at all.
I'm pretty strong now so even when I'm tired there's not much danger of falling down. At Lacrosse I was independent, which gave me a lot of access to the gym to work out on my own. When I was first admitted there, I couldn't do a single rep with 30 lbs on the rickshaw. I can now easily do 200 reps with 30 lbs in two sets of 100, with power to spare. For endurance and lung capacity I can do over 200 steps per minute on a recumbent cross training machine, and I can sustain that for 10 minutes or more as long as my left side cooperates (my left side is doing ok, but it still has issues with control over coordination). It's a bit like running and jogging, neither of which I can do. Maybe I will eventually. I can also perform on the machine's highest resistance setting quite well for strength, especially the knees. I figure that yes, I'm disabled, but there's no reason I can't be strong and healthy.
I've obtained two extremely important items for my home exercise program (again thanks to my friends). One is an 8 foot long handrail that's like having half of a set of parallel bars. This allows me to do a lot of balancing, walking and strength exercises that I wasn't able to do when I first moved in here. The other item is similar to a recumbent cross training machine so I'm able to simulate running and jogging as well as range of motion on my limbs.
Too bad my idiot self didn't consider the future a few decades ago. Chances are that these strokes wouldn't have happened. Oh well, c'est la vie, etc. Life is life and we deal with circumstances and events as necessary.
One day while I was still at Lacrosse I calculated how far I walked one Sunday and it was over a mile! Keep in mind though, that Lacrosse is a controlled, protected environment with tiled floors, and that mileage was cumulative over the course of my day which was 6 am to 10 pm. Now I believe I'm strong enough to do a mile all at once with only a few rest stops. It might take me quite awhile since I'm slow but at least it's a possibility.
On a side note, I had hernia surgery while I was at Lacrosse. I was in the shower by myself, with an occupational therapist nearby. This was the first time I had actually stood all the way up in the shower (up to this point I was always seated) to where I could see my groin. I had no idea what a hernia looked like, so when I saw a big bulge I semi-panicked. The therapist looked at it and said it looked like a hernia. I showed my nurse and she agreed so she got hold my doc. My doc agreed and set me up with a surgeon. At the consultation the surgeon was poking around and found a second hernia! So he made plans to fix them both at the same time. Surgery and recovery went well. I only had to take 4 doses of a pain med after the surgery. I was able to find positions in bed that didn't hurt much so I was able to sleep without pain meds. I was also able to start building up my workouts again on the third day.
Recently I went to visit the KMC's rehab unit. The staff was surprised to see me and gave me a hearty welcome. It felt good to show them that I'm still on the road that they put me on and how far I've come. It felt great to tell them I'm no longer on diabetic meds and that I have it under control.
As to my trombone playing, the jury's still out. There are new challenges that I'll need to overcome in order to play, even a little. My jaw structure is different (my incisors don't meet the way they did before) and the musculature around my mouth is different (I have a tingly feeling in some of the muscles and there is weakness accompanying that). I may need to change my mouthpiece and/or its position on my mouth, or I may need to change my embouchure entirely to compensate for these problems. So for the time being I'm playing long tones to get my face used to making sounds through the horn. Once I'm comfortable with that I'll proceed. It will probably take a few years at least, considering the painfully slow progress I'm making with it. It's as if I had never played a brass instrument although my slide technique is there. We'll just have to see what happens. I've already prepared myself for the worst so if I'm no longer able to play... I'm alive and healthy now, and just listening to music is fulfilling in itself. I also have decades of great memories of my musical friends and associates, and of playing music.
There are those who say that you won't regain any functions after the first 4 months or a year after suffering a stroke. Recovery may come slowly as different parts of the brain take over functions that were lost but it can still come after that year. Since my first stroke I've been able to see small but constant improvements. For example, after my second stroke I was on a recumbent machine one day in KMC's rehab and a muscle in my left knee suddenly started quivering and I could feel it. It started working after a year and a half. Another example happened at Lacrosse. I was working on the parallel bars and I realized that my heel-toe movement on my left side was working again. My left foot drop has become significantly better with heel-toe movement working. Now I can use my toes to push off to get my thigh high enough to keep my foot from dragging on carpets or rough cement. The far left side of my foot still drops but I'm always working on that because there's a chance that those muscles in my lower leg will one day start working again.
Since the strokes I have no "perfect" days. Some days are good and productive with exercise and therapy. Some days are better with some exciting thing happening like the realization that there's been a small but noticeable improvement. I think that sometimes an "off" day occurs just to remind me of the realities of life after strokes. It can be hard to accomplish things on one of those "off" days. Therapy can be just plain difficult because my body is tired or I didn't sleep well. No matter, I don't cancel appointments just because I'm not operating at 100%. Today was one of those off days. I had to slow down a bit, but for me, tired doesn't mean quit. It just means I have to take more time and work harder.
Off days might be attributable to my rather small but effective regimen of meds giving me side effects or it could be effects from the strokes. I'm not inclined to start experimenting with my meds just yet. If their side effects affect me maybe I'll find out in the future. At this time my blood pressure is in good shape and is very consistent so adjustments or changes to my meds will have to wait until the doc and I are ready.
There is an effect from strokes called Post-Stroke Fatigue (PSF) that comes on about once a month or so, and isn't the same as an off day. It has lasted from 2 to 6 days for me. I still have all of my strength when it hits me but there's no stamina to back it up. It makes my body feel very heavy and makes me not want to move, but I do anyway. Some activity is better than none at all. I can't and won't let myself succumb to that because I would feel like I let it get the best of me. Some research has debunked the theory that PSF is caused by depression. I agree with the research because depression is one ailment I am fortunate to be without. There needs to be more research to find a treatment for PSF.
I am living proof that diet and exercise are key elements in the control of diabetes and blood pressure. Insulin and other meds help with diabetes, but people shouldn't rely solely on them to control glucose levels if at all possible. To think that insulin and/or meds are all that's needed to control diabetes is a mistake. A change of lifestyle is mandatory if a person really wants to be (and stay) in control of it. If they aren't willing to make permanent changes... well, diabetes is a very sneaky, ugly disease. Ignoring it will only let it get worse and denial won't change the truth.
Update, early Feb, 2010, almost 11 months after my discharge.
The Goodstuff: Weight - 147 lbs(!) Yes!! I made it to the century mark almost a month ago. Blood glucose and blood pressure are consistent, no change there. A1C is 5.3. Last cholesterol check: 127. BMI: 23.7!
The Bad stuff: There's been little, if any, change to the labile emotions at this point. I still suffer with PSF. Still working to improve my control and coordination on my left side. I still have issues with my voice getting very soft and high-pitched as I get tired. I still have problems concentrating for long periods.
More Goodstuff: Thanks to the generosity of my friends, I have around 6 months of gym appointments booked at the Exercise Institute and it's making a huge difference in strength. My body is getting stronger and I'm starting to see a small gain in muscle on my left shoulder and arm. My walker is almost retired now. I only use it when I get up in the middle of the night to go to the bathroom. Around home I generally walk without my cane unless I'm tired. When I go out it's always with my cane.
Improvement on the trombone is painfully slow but there has been some. I can do flexibilities slowly and tone has improved slightly. Any progress is good progress and I'm thankful for that!
My overall health is good. No, it's amazing considering where it was in Sept, 2008! Yes, I still have problems but I'm still here and still trying to improve on everything. I may or may not lose more weight. I'd like to see a little better BMI, even though 23.7 is within acceptable limits.
My determination and positive outlook are just as strong as ever. If I never see another personal improvement I will keep on as I have been just to encourage others with health issues to be strong and to strive for improvement and good/better health.
I had my quarterly check up on March 17th and it was the best yet. My labs .. A1C was 5.1... it's been under 6 for over a year now. I'm still diabetic but it's nicely under control. Blood pressure reading was 100/65, pulse 62. I weighed in at 143 lbs!!! That's 104 lbs lost in 2 yrs 10 months. He checked my lower body out - no varicose veins, etc and no danger of losing limbs or digits from diabetes as long as I take care of myself. Liver and other organs are fine. I want him to keep an eye on my liver because of our family history... mom had liver problems and so is my sis.
My cholesterol was 140. That was a few points higher but my hdl/ldl ratio is better balanced since I started taking a salmon oil supplement. My doc was impressed with my continued physical progress and he'll check me in 4 months istead of 3 next time. If that's not motivation to stay on track I don't know what is! By the way, my 1st anniversary of my discharge from LaCrosse rehab is coming up on March 31. Every day I think about how fortunate and thankful I am to have come so far.
My recent difficulty with concentration/focus is probably due to me wanting and trying to do mentally-taxing things like I did pre-2nd stroke. I used to be able to keep my focus at a peak for a hours upon hours, but not so now. I have to find my new "mental pace" and make sure my sleep is always adequate. Emphasis on the adequate sleeping part. The post-stroke brain sure is weird to deal with.
Strength training is really paying off. My trainer increased my arm weight to 116 lbs and I was pleasantly surprised that I got through it! My left bicep is showing itself a little more now too. It's experienced the most loss of muscle mass. Legs are up to 170 lbs.. not super strong yet but getting there. As my legs get stronger I'm becoming more stable as I walk. This kind of strength training is only a 15-30 minute session but when its done, muscles are are worn down nicely and when they rejuvenate, they get stronger quickly. Funny how I scoffed at the idea of such a short workout years ago. I sure am a believer now!
Usually the day after strength training is a rest day, but Friday I was able to do some errand running with no problem. That shows a nice improvement in endurance/rejuvenation.
I'm still working on my playing. Progress is very slow, but evident. I'm able to muddle through some flexibilities slowly, although range hasn't improved much. At least the ol' 2B doesn't feel neglected. I took my bass bone out recently but I don't have enough control in my left arm to hold it steady yet. I figure when I get to the point that I can hold it steady it'll help my support and air capacity.
Update: July 21, 2010:
Today is an off-day for me, but it's a great day otherwise. I had my doc appointment today and I'm thrilled to announce that he took me off Cardura - I'm down to 3 blood pressure meds! My lifestyle changes are really making a difference. Labs were once again wonderful - A1C is 5.3, cholesterol 120-something. I got so excited that I forgot the actual numbers of cholesterol, but it was great!
I've been scoffed at over my almost-vegan food intake but the simple fact is that what I'm doing and eating works. So what if meats, sugared items, beer, sodas, fast food, etc, "taste good". Natural tastes as least as good as that stuff. Our society has made the huge mistake of wanting nutrition to be a pleasure thing instead of paying attention to how the things we eat affect our health. It's a shame that people try to rationalize eating fast food and other restaurant food by touting the lower caloric values of certain things when a look at the ingredients, sodium content, etc, tells the real story.
Other news: I've beaten reflux! By eating smaller meals more frequently and cutting down on spices I haven't had reflux in 3 months, and that's without any reflux meds for that time. Though my equilibrium is still an issue I completely retired my walker. I still use my cane. Last week I carried my laundry and soap to the laundry without the use of a cart or my walker for the first time. Strength training is still going well - 200 lbs with my legs, 145 lbs arms (overhead), 105 lbs back, 126 lbs arms (forward & back). The extra strength in my knees makes a huge difference when I need to stabilize myself while walking.
Trombone has improved slightly, but what a tough project! I'm still practicing though because it could make a real comeback, just like everything else that's been affected by the strokes.
No change in my retention difficulty or my voice, but I'm very thankful of the fact that I can still compose the written word. While my historical memory is good, I'm finding gaps here and there as time goes on.
I've developed a problem with crowds. People are generally not real observant in stores and such and the result of that is the danger of falling or otherwise getting hurt. I was all set to begin a Tai Chi class but it's held at the Kroc center which is nothing short of a zoo. I went to the center on different days but found it to be the same all the time so I bowed out for now. I still would like to learn Tai Chi but I'll need a calmer, less crowded venue to do so.
As time goes on I realize more things that have been affected by my strokes. I talk about them but I steadfastly refuse to complain about them. It's all part of my post-strokes life and to complain only wastes time and energy, and it reeks of self-pity. I'm very thankful of the life I have. From time to time I hear how I've helped someone by posting this and that in itself makes it all worthwhile.
The Exercise Institute I do strength training here. There are bigger outfits but there are none better. They're in the Spokane/Coeur d'Alene area with several locations and some of the best/coolest trainers out there. I foresee a wonderful future for them!