<p>Sounds like you are doing great! </p>
<p>If I can ask a personal question, is “stroke camp” something that was easy to get your insurance company to pay for, or are they not, or did you have to fight for it?</p>
<p>Also, remembering Patricia Neal, who may be one of the most famous stroke survivors.</p>
<p>What a wonderful and encouraging thread to read! I used to work as a speech/language pathologist in a major rehab center. The program you describe is a fantastic idea…one i had not been familiar with (i have been out of that profession for a long time…).</p>
<p>All the best to you in your continued endeavors!!</p>
<p>Your description of therapy with forced used of the affected side rather than compensation with the less affected side kind of highlights some of what rehab professionals are up against. Generally the focus of therapy it to resume basic functonal activities so the individual can function out of the hospital as quickly as possible. Early discharge means lower cost. Learning compensatory techniques happens more quickly than recovery of function in the most severely affected limbs. We therefore rarely see a facility that can afford implement the kind of treatment Sherpa is getting. On the flip side it does take a special person to put up with this type of therapy! Congratulations Sherpa!</p>
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I have a family history of atrial fibrillation (A-fib), an abnormal heart rhythm, and had my first episode in Sept., 2008. I was cardioverted (where they shock your heart to get it back in rhythm) a couple times, but kept going back into A-fib. One of the risks of A-fib is that clots can form in the poorly contracting atria and when the patient comes out of A-fib the clot is pumped out and ends up in the brain. They scope the heart to check for clots before they do a cardioversion and it seems that they missed one before my last cardioversion. As I recall I was taking Warfarin (Coumadin) but was probably sub-therapuetic. I had been out of A-fib for a day and a half when I had my stroke. I had been sleeping in bed and woke up having rolled out of bed wedged between the bed and a nightstand, unable to move except for my right arm. I was able to call to my wife, who was in the kitchen. She told me she thought I had had a stroke or a seizure (I didn’t and still don’t know the difference) and immediately called 911. Her quick action probably saved my life or at least minimized the damage. I was taken to the U of Utah stroke unit, which is considered a very good stroke facility, and they did their thing. They performed a mechanical thrombolechtomy (sp.?), which is where they thread a device up your femoral artery, through your heart and to your brain. At the end of the device is what has been described to me as a corkscrew, which they screw into the clot and pull it out. This was 10/30/08, and I spent the next several daysi n the Neuro ICU watching election coverage. The week before the election was all about “Joe the Plumber” and I remember making a series of jokes about “Joe the Sommelier” who had saved my life.</p>
<p>The jokes never stopped, and I think keeping an active sense of humor has a big part of my recovery. In the ICU a series of nurses and techs would come in to take blood every few hours for a couple of days, and invariably they would say some version of “you’re going to feel a little prick”, to which I would always respond “that’s what he said.” I am a non-Mormon living in Utah, but I look like a typical Mormon, white skin, trim build, short hair, etc., so my brand of humor can be a little disarming.</p>
<p>My favorite reaction to a joke was from my cardiologist when he was consulting me about having an ablation, which is a surgical procedure to prevent the electrical impulses in the heart that send the heart into A-fib, which I have now had and seems to be working. While explaining to me what to expect during the procedure and during recovery I asked when I’d be able to exercise, and he cautioned me that I shouldn’t lift anything over 20 pounds for about two weeks after surgery. Totally deadpan, I asked “what do I do when I have to pee?” He looked bewildered until my wife gave me a playfull punch to the shoulder and then, understanding the joke, he first turned beet red and then started laughing an embarassed Mormon-middle-school-boy laugh.</p>
<p>As long as I mentioned the election, and since this a college admissions forum, I’d like to mention my thoughts as I realized I was in A-fib in late September and into October. My heart was racing uncontrollably and I was seriously afraid I was going to die. My father had died in surgery to correct his A-fib, so my fears were very real. My short term goals were very simple: I wanted to live long enough to see my son’s Princeton likely letter, and I wanted to see Obama elected President. The likely letter came a few before the stroke and I watched the election returns from my hospital bed.</p>
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I happily paid the fee for this “camp”, just as I pay for my physical therapy and personal training sessions.</p>
<p>I didn’t even try to get insurance to pay. Insurance coverage for rehab is a joke. I only get enough benefits to cover maybe 6 PT sessions per year, so I burned though this year’s coverage in February or so. The philosophy seems roughly, “millions for treatment, but not a penny for prevention.” I see rehab therapy as prevention for my next disaster, whether it’s a broken hip, a car crash, or who knows what?</p>
<p>My other insurance gripe: They balked at paying for the mechanical thrombolechtomy, because they called it “experimental”. I guess the doctors were supposed to leave the clot in, and I was supposed to die.</p>
<p>Sorry to sound so bitter. It’s been a lot to deal with.</p>
<p>Just found your thread, sherpa! Glad to hear your are soldiering through. You are a true model for stroke survivers and rehab!</p>
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<p>Doesn’t sound like you are a bitter person in the least - just justifiably angry at insurance companies, which is quite rational. </p>
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<p>And the insurance company would have been finished paying, so…there’s just such an innate conflict of interest in insurance coverage.</p>
<p>Anyway, I asked because I’m trying to figure out insurance coverage for an entirely different type of therapy but it appears that it will be out of pocket. I hear so many people talking about so many types of therapy, I wondered if I was missing some key to insurance coverage. Sounds like not.</p>
<p>Wow! Super inspirational story! I think humor and a positive outlook are very important in order to be healthy and it is free and you do not have to get pre certified by your insurance to have it! Laughter and Love are the best medicine!</p>
<p>Thank you for sharing your story and keep on persevering!</p>
<p>Thank you so much for including us in your recovery, Sherpa.</p>
<p>I think this thread comes at a very timely time. Patricia Neal just died on Sunday, and I remember when they said she’d never walk or talk again, and certainly not act, and she did!!!</p>
<p>She also had to endure being cast aside by her husband, but she lived to see her granddaughter become a supermodel. And the baby she was carrying when she had the stroke was born completely healthy.</p>
<p>What an inspiration along with you, Sherpa.</p>
<p>Thank you, Sherpa, for sharing your story.</p>
<p>I have a friend who is a Speech Therapist and she often gets calls from people whose loved one has had a stroke. We all know these services are out there but too often we have no idea what to expect when someone we love or we need them ourselves. I think it really helps to hear of others experiences. It helps normalize what are really very common experiences and removes the fear of the unknown.</p>
<p>I wish you the very best of luck although it doesn’t sound like you need luck at this point!</p>
<p>I’d like to hear your “recuperative power of music” story that you mentioned, too. :)</p>
<p>I’m rooting for you, Sherpa! It sounds like you’re doing great.</p>
<p>Sherpa, thank you for sharing your story. DH’s father and grandfather both had strokes so it is something we think about. You approach is admirable and your sense of humor great. Keep pushing.</p>
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Thanks for reminding me.</p>
<p>I hadnt thought about this story in years, until last week when my therapist asked me to play a few piano scales for hand therapy. Ive never played piano, but playing the scales was very therapeutic for me. It also reminded me of something I hadnt thought about in years, the first time I remember coming in contact with a stroke patient. It was so long ago that many of the details of the story escape me, but the details dont matter; the story was intensely powerful to me then, and remembering it now it is equally powerful. </p>
<p>About ten years ago our family took an Alaskan cruise on the SS Universe Explorer, a small (less than 800 passengers) ship that specialized in educational cruises. It had an extensive library but no casino, and had four naturalists on board for daily presentations and to join on shore excursions. The passengers were more like the CC parent crowd than the Disney/Carnival/Celebrity cruise crowd. Im sure that some CC folks have cruised on the Universe Explorer. It was intimate enough that people were able to get to know each other a bit and within a few days everyone seemed to recognize one another, both on the ship and on shore.</p>
<p>Like most cruises, this one had a passenger talent show, but it was unlike any amateur talent show Ive ever seen. There was a series of impressive acts, such as the distinguished older gentleman impeccably reciting poetry (Robert Frost, if I remember correctly) from memory. Impressive stuff. This wasnt your baton-twirling and tap-dancing set, to be sure.</p>
<p>The final performance featured a pair of women we had seen throughout the cruise but had never gotten to know. They had always been together both on the ship and on the shore excursions, the younger (maybe 60 y.o.) woman pushing the older woman in a wheelchair, both experiencing the full experience of the cruise but never appearing happy. As I was sure it was for most of the other passengers, our first glimpse into their stories was the night of the talent show.</p>
<p>The younger woman wheeled the older woman on to the stage and gave us a brief introduction. The woman in the wheelchair was her mother, who had somewhat recently had a stroke. They were both musicians; the mother was a pianist and the daughter was an opera singer. She talked about how her mother had been ravaged by the stroke but had returned to the piano for comfort and familiarity, much like one might turn to an old friend for support, and how through her reconnection to her music her mother had been able to reconnect to life. Though many of the details are hazy for me, I clearly remember her calling this the recuperative power of music. It was an amazing story told in an intimate setting; most of the audience was in tears. I remember that I was.</p>
<p>Then the daughter helped her mother onto the piano bench and the mother started to play. I had no idea what to expect and I was blown away. I dont know anything at all about classical music so I cant even guess what it was, but it was delivered with such power and precision that one could hardly believe that it was coming from this frail old woman. Then the daughter started singing. I think it was in Italian, but I dont remember and it doesnt matter; all that matters was that her voice was incredibly beautiful and went perfectly with her mothers equally beautiful performance. My impression of these two women instantly changed; no longer were they quiet sad women living in their own reclusive world; they were strong, beautiful, and inspiring.</p>
<p>When the performance ended the older woman struggled to her feet to take a bow as her daughter steadied her. Seemingly for the first time on the cruise, she was smiling. She was smiling radiantly, with tears streaming down her face. As the crowd rose for a thunderous ovation she seemed to gain strength from them; she stood taller, prouder, and happier as the applause continued as if reliving, in that moment, all her past musical accomplishments and accolades.</p>
<p>Things were different between them and the rest of the passengers after that night. There had been a wall between them and the other passengers, but the wall was broken down that night. Everyone seemed to want to get to know them and they seemed to enjoy the attention. At the time I thought that it was us, the other passengers, who had been affected by the experience and had changed that night; now I realize that there had been a transformation in them that night, too. For the mother, especially, being able to perform that night was probably a life-changing event.</p>
<p>Thats how I would have told this story a week ago. Now, after having been in my stroke camp for a week and a half, I realize that there is no magical recuperative power of music. There was for that particular lady, but there wont be for me or many other stroke patients. I suppose each of us must find our own particular recuperative power of fill in the blank. It isnt about music; its about finding ones own pathway to reconnect a deeply ingrained brain function to an equally deeply ingrained muscular function. For me it might be swimming; both my brain and my muscles know how to do it correctly, but they need to get talking to each other again. For someone else it might be dance, or speed skating, or rolling a joint.</p>
<p>Thanks, everyone, for keeping this thread going. I’m really enjoying all the responses, and posting here is helping me in a lot of ways.</p>
<p>It is so wonderful to share in your recovery journey, sherpa. I want to hear about your fencing tournament travels to Atlanta!</p>
<p>Oh my God, such a powerful story, sherpa! I don’t think I would ever forget that wonderful pianist and her daughter, and how their music transformed everyone on that trip, both performers and audience.</p>
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<p>Ha! Priceless! My H wanted to know what was so funny when I guffawed with laughter.:)</p>
<p>poetsheart, you just made my day. I’m glad you liked that.</p>
<p>jym, it was a nice trip; I’ll pull up the ATL thread later and update there.</p>
<p>The music story brought tears to my eyes. Thank you, Sherpa. It was a beautiful story and so beautifully written. </p>
<p>Where is the fencing thread you mentioned? My son has fenced, and fencing tournament stories tend to be good stories!</p>
<p>Just found the thread. Great work sherpa, both in the story telling and the camp progress. Our family too has had our “bacon saved” multiple times by the U of U Hospital and I totally relate to the delicate balance of humor that is required in Utah!</p>
<p>Keep up the messages and the good work.</p>
<p>What Atl thread, sherpa??? I wanted to take you guys for good sushi!</p>