The next chapter in the book I will probably never write would have to be one discussing the various and sundry things we have tried to help us along our way. Of course we made ourselves available to everything offered under insurance, the inpatient rehab, the outpatient rehab, etc. But being those weird alternative health people, we didn’t want to take the western medical approach as the only way to go. As I have said, I have come to believe that the best experts of any approach are just making educated guesses, and each person must make the decision as to what they are willing to live with and what they are not willing to live with. Here, in no particular order, are things we considered and tried.
1. On the issue of depression: Almost from the beginning people kept telling us that Strokeman was depressed and probably needed an antidepressant. They also said that he needed to meet with the neuropsychiatrist. He was totally unwilling to do either. There are a lot of reasons for that, which I will not go into. However, I have to say I questioned the prudence of giving a man who was already trying to recover from a brain injury something that messes with the brain. I also have friends who have had a terrible time getting off of antidepressants, and was wary of starting down that road. We did counsel with our pastors on more than one occasion, but not in any regular, purposeful way. What we have found to work for us is a combination of things. First, we found an herbal combination that is called, “Happy Camper.” I can’t say for sure if this is really helping or if Strokeman just imagines it is. Either way, it has made him feel better. Secondly, I have begun reading to him from Jerry Bridges’ book, Trusting God Even When Life Hurts. I think the subject has been helpful to us both, but doing something “normal” together has also been helpful. Related to that, I have begun to make an effort to maintain our friendship. It is something I was advised to do by an acquaintance who has been caring for her husband for 17 years since his aneurism. It is hard not to reduce life to taking care of needs and then retreating. In the beginning, that is all that I was capable of, and then habits formed. More about that later.
2. On continued exercise at home: I came home with a whole list of exercises from each rehab discipline. Honestly, keeping up with it was exhausting. I tried to solicit help, and for a while that went pretty well. However, Strokeman hated those exercises, and I got tired of beating my head against the wall. The one thing he would do was go to the pool. There is something about floating in the water that is very relaxing to him. He will walk farther, stretch more, do squats, leg lifts, arm exercises, whatever I can think of – as long as we are in the water. So I have for the most part given up trying to do all the things he hates and opted for the thing he will do. Does this mean that our progress is slower? Probably. But I am pretty sure that without the pool we would have given up. So my advice to you is to find what works for your survivor, and for you. I found that in order to maintain the friendship, I had to be willing to give up some of my rehab expectations. It may be that you won’t have to. It may be that the rehab is more important than the friendship for you. Make the decision you can live with, and then live with it.
I used to get frustrated because we would do all this work in the pool and then Strokeman would come home and lay in the bed. There was no noticeable change in the daily life from the efforts. Well, the longterm perspective has shown me that there have been gains, however small. Besides, it is something that makes him happy. There is precious little he looks forward to in his life now. But the pool he loves. It is enough reason to do something.
3.SCENAR: At one point I began having severe pain in one of my teeth that culminated in my visiting with an endodontist. This kind, naive man asked me if I might be under some stress, because my pain was caused by gnashing my teeth (yes, he used the word gnashing). Of course, I cried. As I told my story between sobs and sniffs, he said to me, “Don’t give up. There are new things being tried every day.” He went on to tell me about a procedure called SCENAR that was developed to treat astronauts on the space station. The station’s waste water recycling system was such that if one astronaut was treated with a pharmaceutical, they all ended up getting some of the medication eventually (think about it, but not too hard – it’s gross). SCENAR is a device that sends electrical pulses into the body that causes nerves to produce peptides and… well, google it. This endodontist guy suggested I google SCENAR and stroke, and what I found was stories in which patients had used this technique to wake up the nerves in effected limbs with varying success. As with any kind of treatment, it is most effective if administered in the first six months. The practitioner who treated him was an acupuncturist who only used SCENAR as an alternative to acupuncture on people with needle phobias. Had I known that going in, I would have kept looking for someone who really believed in the process. Having said that, I could tell that this little electrical wonder was waking up some nerves. Once when the practitioner was working on his left arm, he initially could not feel the electrical pulses. By the end of the session, he could feel them. Each time we left the office, I could tell a marked difference in his gait. It didn’t last, but I could see that given enough time and frequency this might have made a difference. Unfortunately, the lady wanted to do all manner of other things as well, leaving less time for the SCENAR, and aggravating the patient. When she started talking about dealing with his anger and depression using a technique that required exploring his past, he was done, and wasn’t interested in trying to find someone else to pick up where she had left off. I mention it, though, because I think it has merit as a tool for stroke survivors. It is not painful. It does not interfere with medications.
4. One thing we noticed fairly early on is that Strokeman becomes very fatigued if he does not stay hydrated. We learned this during his inpatient stay, and have continued to find drinking plenty of water to be very important. Unfortunately, this isn’t something Strokeman likes to do, because he thinks it makes him have to pee more often. While there is a correlation between input and output, your bladder will adjust to increased water intake, and you will eventually end up being able to hold more pee. This is something he tends to forget. I have to remind him. He doesn’t drink as much water as I would like, but he drinks enough to keep himself from suffering dehydration symptoms. We have begun to drink distilled water, because, much like the space station, public water purifying systems have been found to allow alarming amounts of pharmaceuticals and other undesirables to pass through. There are other things that make that our choice, but any water is better than no water at all. It’s a seemingly small thing, but it can make a big difference.
5. Pharmaceuticals: When we first came home from the hospital Strokeman had a lot of difficulty with asthma. We went to the doctor who prescribed not one, but three medications to resolve this problem. When I asked how long he should be on these, the answer was for the rest of his life. When I questioned whether this might be overkill, the doctor told me if I didn’t like him we could go somewhere else, and that he was trying to help this poor man who was having a really hard time. I cried. So we started out on the three prescriptions, and over about a year we discontinued them, one by one. That has been a year ago now, and Strokeman has not had one case of asthma since then. My non-medical assessment? Strokeman was still having trouble with swallowing and was aspirating when he drank water or other thin liquids. He began to be more careful to take smaller drinks and think about swallowing properly. One of the medications the doctor prescribed had a “rare” side effect of drowsiness during the day and poor sleep at night. When we discontinued this medication, many of Strokeman’s sleep problems were resolved. This medication, after insurance, was costing us $60 a month. I mention this because doctors will sometimes prescribe medications without fully comprehending the problem, the side effects, interaction with other medications, or the cost. It is up to you to determine whether it is really the right thing to do.
6. Non-pharmaceutical supplements: Initially I was quite reluctant to add much to Strokeman’s medication regiment, because I didn’t know how supplements and the pharmaceuticals would interact. I have learned how to do the research on this, looking both at what the pharmacists say, and the herbalists. In addition to the Happy Camper Pills, we have added a good multivitamin, CoQ10, fish oil, probiotics, magnesium, and L-glutimine. Most of these are for overall health and stamina. The L-glutamine has helped with bowel regularity and stress reduction. We tried a round of Beta Prostate in hopes of reducing night time peeing episodes, but have found it to be useless.
7. Orthotics: When we were in out patient rehab the physical therapist had Strokeman fitted for a knee brace that would keep his knee from hyper-extending, and an ankle brace that would keep his toes slightly elevated when he was walking. These were both very helpful in the beginning when he was learning to walk. However, in my research I found that while the braces are helpful, they can also hinder the muscles from strengthening to the point of being useful. In other words, it is easy to become dependent on the orthotic devices. We began to consciously work at exercising the muscles being aided, in hopes of ridding ourselves of the need. We no longer use the ankle brace for keeping the toes elevated, as Strokeman has developed enough strength in his ankle to lift his own toes. His knee is still prone to hyper-extension, so when we are going to walk any distance, especially away from home where smoothness of path is not guaranteed, we still use the good brace. It not only preserves the integrity of the knee, it also provides stimulation to the nerves, helping his brian “locate” that left leg. We have a cheaper, less effective brace we use in the pool to help support the knee. When walking up the slope to get out of the pool, I walk on Strokeman’s left side and use my right leg as a “brace” behind his knee.
8. Support Groups: Since inpatient rehab, I have tried to become involved in some sort of a support group on several occasions. Strangely enough, this has never quite panned out the way I expected it to. The one we were first exposed to at the rehab center met at a time and place that were not practical to us in the beginning. There was a support group for caregivers advertised in the out patient center, but when I attended it, I was the only person there beside the neuropsychologist who lead the group. While we had a nice chat, it was not what I was hoping for. Once we got home, I began looking for a group closer to us. I found one sponsored by a nearby hospital, but the one notice of a meeting I received was at a time and place not convenient to us. I then looked for a support group online, and was initially very encouraged by the information I found there. However, I soon became weary of articles with titles like, “My [disabled] husband said I could have a boyfriend” or “Why I left my dying spouse.” So. While I am very much in favor of the ‘idea’ of support groups, I have not providentially been able to find an one that meets my particular needs. I have formed a support system for myself of loving, godly women who don’t know much about being married to a stroke survivor, but know tons about how to be a friend, to pray for me, and to encourage me. I think that making the effort to attend church and sit under consistent biblical preaching has also gone a long ways towards keeping me from going completely mad. Finally, as you know, I have found great encouragement in books written by people who know tons more than I do about how to navigate through this life of difficult providences. So for now I will continue to get by with the help from my friends. At this point I have been very blessed by this approach.
I am sure there are other things we have tried that haven’t come to me in the midst of writing this particular entry. I will say that for now Strokeman isn’t very open to trying any new doctors, treatments or exercises. I save my begging and cajoling for things that look very hopeful and really matter. Lately there haven’t been any of those. We are in a mode of just learning to be content with where we are right now. The peace and quiet has been kind of nice.