tag:blogger.com,1999:blog-135512982024-03-07T09:58:15.289-06:00MSmssIt's life with a diagnosis which means certain undeniable things. At least Multiple Sclerosis is interestingly mysterious and neurological. Many symptoms resemble challenges most people deal with if they live into old age.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.comBlogger75125tag:blogger.com,1999:blog-13551298.post-13621489766316907342008-06-19T02:36:00.000-05:002008-06-19T02:37:31.947-05:00comment applicable to MS from the Dao Je JingWhat is most perfect seems to have something missing;<br />Yet its use is unimpaired.<br />What is most full seems empty;<br />Yet its use will never fail.<br />What is most straight seems crooked;<br />The greatest skill seems like clumsiness,<br />The greatest eloquence like stuttering.<br />Movement overcomes cold;<br />But staying still overcomes heat.<br />So he by his limpid calm<br />Puts right everything under heaven.<br /><br />Waley 45Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-59336178266225776792007-01-17T12:03:00.000-06:002007-01-17T12:07:15.527-06:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpKLCc7spG9O1KP006KzxX-mPUQs2Soc5wg1ymHqhtOcI1dwOrNcmPjlFGR0nc-ok1fpHNBwtdQGM15ItGx9B8laxtxW5sltwMczxg-ZgWOR59F-7a64VbmjU8096UC5s9jQHHGg/s1600-h/Cecilia+9-R1-009-3.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpKLCc7spG9O1KP006KzxX-mPUQs2Soc5wg1ymHqhtOcI1dwOrNcmPjlFGR0nc-ok1fpHNBwtdQGM15ItGx9B8laxtxW5sltwMczxg-ZgWOR59F-7a64VbmjU8096UC5s9jQHHGg/s200/Cecilia+9-R1-009-3.jpg" alt="" id="BLOGGER_PHOTO_ID_5021062359568851842" border="0" /></a>Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-46230284768293438642007-01-17T11:54:00.000-06:002007-01-30T07:07:34.921-06:00About Cognitive Changes in M.S.<p class="MsoNormal">A month ago my MS specialist and I were pleased that I’m doing well.<span style=""> </span>He personally appreciates my training and abilities in classical music.<span style=""> </span>He suggested that I try to do something with my music.<o:p></o:p></p><p class="MsoNormal"><o:p></o:p>For the last month I have been wondering why and how I came to terms with not doing much at all in music.<span style=""> </span>Some conversations with my aunt have given me some insight.<o:p></o:p></p> <p class="MsoNormal"><o:p></o:p>Aunt Roberta is 77.<span style=""> </span>I recently moved close to her.<span style=""> </span>We found that we could talk only to each other about certain cognitive changes.<span style=""> </span>Somehow, we were both no longer able to read books, no matter how much we loved them or wanted to read.<span style=""> </span>I guessed that brain atrophy, either from M.S. or from aging, was probably the culprit.<span style=""> </span>We commiserated about missing books.<o:p></o:p></p> <p class="MsoNormal"><o:p></o:p>Then Aunt Roberta discovered that she had a removable brain tumor—the size of a croquet ball, no less!<span style=""> </span>With some trepidation, the operation was accomplished nicely.<span style=""> </span>It has been a month now and Aunt Roberta <b style="">can read books again</b>.<span style=""> </span>I had not imagined that either one of us would ever be able to regain the ability to read.<span style=""> </span>I’m so thrilled for Aunt Roberta.<o:p></o:p></p> <p class="MsoNormal"><o:p></o:p>Anyway, as we talked yesterday I explained to Aunt Roberta that the same cognitive decline that we had with books has also affected my enjoyment of music.<span style=""> </span>Both books and performances have a substance that is much more dimensional than I am currently discerning.<span style=""> </span>I know this because it was formerly my privilege and pleasure to enjoy music and reading on a daily basis.<span style=""> </span>(I miss that old self but I do not <i style="">expect</i> such gifts.<span style=""> </span>They are blessings, not rights.)<o:p></o:p></p> <p class="MsoNormal"><o:p></o:p>In fact it was formerly my <i style="">job </i>to be fully immersed and productive in music because I am a well-trained classical musician.<span style=""> </span>But here is an example of what happened with me after I was diagnosed—but before I quit working as a musician:<o:p></o:p></p> <p class="MsoNormal"><o:p></o:p>A conductor of a university orchestra in <st1:place><st1:city>Washington</st1:city>, <st1:state>D.C.</st1:state></st1:place> asked me to join in for a couple of rehearsals and the concert.<span style=""> </span>Bringing in experienced players to bolster the back of sections is a technique that strengthens student performances.<span style=""> </span>I was being paid.<span style=""> </span>I was very comfortable being paid.<span style=""> </span>I had spent many years as a principal cellist which meant it was natural for me to grasp the music and have a leadership role.<span style=""> </span>During the rehearsals the conductor sensed my positive contribution and asked me to support some solo passages too.<span style=""> </span>The repertory was quite familiar to me.<o:p></o:p></p><p class="MsoNormal"><o:p></o:p>As I was comfortably performing the concert, with some intentional leadership, I suddenly caught an odd look from the conductor.<span style=""> </span>As I wondered about his thoughts, I realized that I was two measures off in comparison to the orchestra.<o:p></o:p></p><p class="MsoNormal"><o:p></o:p>I cannot explain how impossible that would be.<span style=""> </span>The absolute first lesson for any orchestral work is:<span style=""> </span>listen to what is going on and <i style="">do not play in the rests</i>.<span style=""> </span>I was deeply shocked.<span style=""> </span>How would it be possible that I am hearing but not hearing?<span style=""> </span>How would it be possible that I could not do the job that I had been so adept at for so many years?<span style=""> </span>How had my getting lost happened?<span style=""> </span>I was deeply, deeply embarrassed.<span style=""> </span>My gaff was so unprofessional.<o:p></o:p></p><p class="MsoNormal"><o:p></o:p>To know that the body and mind that you have relied upon is <i style="">profoundly unreliable</i> perturbs a person’s entire sense of existence.<span style=""> </span>(M.S. is an existential problem in my experience.)<span style=""> </span>As I consider some of my cognitive changes, it makes sense that my abilities to teach and listen and create have been very significantly altered.<o:p></o:p></p><p class="MsoNormal"><o:p></o:p>There is a movie about the cellist Jacqueline Du Pre.<span style=""> </span>She played wonderfully and fiendishly well, in the late 60’s and 70’s, as a soloist with many world class orchestras.<span style=""> </span>Her M.S. hit her strongly.<span style=""> </span>Later in the movie there is a scene where she sits in with an amateur orchestra in order to cameo on the toy drums in a Haydn symphony.<span style=""> </span>She does not sense the moment that she should play.<span style=""> </span>The conductor cues her a few times.<span style=""> </span>Jackie is lost in the cognitive soup.<span style=""> </span>That is how drastically we can change due to the cognitive effects of M.S.<o:p></o:p></p><p class="MsoNormal"><o:p></o:p>How did I come to terms with not doing much in music?<span style=""> </span>A daily confirmation that previously grasped dimensions no longer exist for me permeates my experiences. <span style=""> </span>I remember with deep appreciation of natural gifts that were once mine.<span style=""> </span>Things have <i style="">very tangibly </i>changed.<span style=""> </span>I cannot pretend otherwise.<o:p> </o:p><br /></p><p class="MsoNormal">I will try to follow the doctor’s advice.<span style=""> </span>Please tell the conductor to cue me largely.</p>Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1146204599058101482006-04-28T01:04:00.000-05:002006-04-28T01:11:15.436-05:00Science by streaming videoThese lectures often include discussion of current research and, by implication, indicate current scientific-culture trends.<br /><a href="http://www.videocast.nih.gov/">http://www.videocast.nih.gov/</a>Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1144572953514629002006-04-09T03:55:00.000-05:002006-04-09T03:55:53.600-05:00<a href='http://photos1.blogger.com/hello/30/6300/1024/File0025.0.jpg'><img border='0' class='phostImg' src='http://photos1.blogger.com/hello/30/6300/320/File0025.jpg'></a><br /> Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1144568136495459532006-04-09T02:23:00.000-05:002006-04-09T02:35:36.543-05:00Vignette on who is a good doctorWhen I was diagnosed, it was two days until my last day at work. I was doing so much cello playing that I didn't have time to goof around at the Academy of Sciences, I thought. I'd given my notice 4 months earlier and they had asked me to stay several times, but I always said "no" because it was my plan to go back to entirely focusing on music. I was making plenty of money in music, but I would not have been able to buy any insurance, with known MS. I needed a job in order to have continuing insurance.<br /><br />Until the good doc told me what to do--get my job back--I didn't really suspect how serious the situation of having MS was. Since then I've come to terms with financial ruin that is the norm for those who have MS, and the loss of independence due to program after program that you have to toe the line for, including the medical establishment itself. Little do we realize in the beginning how many decisions that we will have continue to make to enjoy life (dammit) within the circumstances of being ill, uncomfortable, disturbed, disappointed, sad, confused, not to mention, angry.<br /><br />To be clear: I enjoy many things. This story is about, in retrospect, the fact that the doctor gave great advice, guiding my actions. She helped me very much to mitigate many long term problems. She was <a href="http://www.msactivesource.com/msavProject/msas.portal/_baseurl/threeColLayout/SCSRepository/en_US/msas/home/expert_q_and_a/index.xml">Heidi Crayton</a> in Washington, DC.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1144007067834450992006-04-02T14:42:00.000-05:002006-04-02T14:44:27.853-05:00Neurological Overloads That AmazePerformers often have the impetus to grab the instrument from someone they are listening to, saying, "No! Do it like this!" Of course, we don't usually do it, but we pretty much always think it. So, when I attended a piano trio concert last night in which the trio was playing repertory that I used to perform and know, I was experiencing physical memories as I watched and listened. To make it more intense, the cellist was not bowing well. He was forcing in order to try to get big sound. Big sound is drawn from the string by encouraging vibrations to become huge. Instead he was squashing the strings, especially in climaxes. (He broke many bow hairs--a sure sign of forceful pressure.) Thus, not only was I reliving passages that I once knew so well, but I was also involuntarily sending mental vibes to the man on how he should be bowing in comparison to how he was bowing.<br /><br />Today my right (bow) arm is downright limp. It hurts to use it and it won't lift very well--not because of muscular pain, but because nerve impulse conduction is somehow all screwed up. I guess my neural pathways became overloaded simply due to my imagination, which in this case is probably almost as solid and realistic as actually bowing, due to 30 years of practice.<br /><br />What a corner to be backed into: having a highly trained skill that overloads the neurology upon use. Can you believe that simply imagining is enough to overload my right arm!?Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com2tag:blogger.com,1999:blog-13551298.post-1141934410539291402006-03-09T15:00:00.000-06:002006-03-09T14:07:33.900-06:00<a href="http://photos1.blogger.com/hello/30/6300/1024/zpage175x.jpg"><img class="phostImg" src="http://photos1.blogger.com/hello/30/6300/320/zpage175x.jpg" border="0" /></a>Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1141934681815820122006-03-09T14:04:00.000-06:002006-03-09T14:08:17.463-06:00<a href="http://photos1.blogger.com/hello/30/6300/1024/zpage038.1.jpg"><img class="phostImg" src="http://photos1.blogger.com/hello/30/6300/400/zpage038.0.jpg" border="0" /></a><br />Looked upon: turned to stone. Inertia in early civilization.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1141933530780099852006-03-09T13:37:00.000-06:002006-03-09T14:18:11.593-06:00Santayana on the situation"While we think we can change the drama of history, and of our own lives, we are not awed by our destiny. But when the evil is irreparable, when our life is lived, a strong spirit has the sublime resource of standing at bay and of surverying almost from the other world the vicissitudes of this.<br /><br />The more intimate to himself the tragedy he is able to look back upon with calmness, the more sublime that calmness is, and the more divine the ecstasy in which he achieves it. For the more of the accidental vesture of life we are able to strip ourselves of, the more naked and simple is the surviving spirit; the more complete its superiority and unity, and, consequently, the more unqualified its joy." <span style="font-style: italic;"><br /><br /><span style="font-size:85%;">The Sense of Beauty: Being the Outlines of Aesthetic Theory</span></span><span style="font-size:85%;"> by George Santayana, Charles Scribner's Sons, New York, 1936, p. 178</span><br /><br />Inertia supports being located without of it all. (Where does inertia come from!? What does it ultimately mean for an organism/self?)Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1141671100172537712006-03-06T12:51:00.000-06:002006-03-06T12:51:40.180-06:00<a href='http://photos1.blogger.com/hello/30/6300/1024/panorama2.0.jpg'><img border='0' class='phostImg' src='http://photos1.blogger.com/hello/30/6300/320/panorama2.jpg'></a><br /> Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1141670724327094962006-03-06T12:43:00.000-06:002006-03-06T12:46:35.350-06:00How one drug is sizing upConsidering how many investment magazines and firms write Tysabri up as money-growing-on-the-tree drug (due to the fact there is not any very good existing/competing therapy), I'm very suspicious of the powerful wishful thinking out there. You see...it's not just people who have MS who are hopeful--it's a larger community of investors who watch drugs in order to make money // not to mention <span id="misp_0_2" class="hmd">Biogen</span> // trying to stay profitable.<br /><br />There is more information on side effects suddenly available too. I think the list of problems has to be carefully read by anyone considering Tysabri. Now I'm betting that we who live with all sorts of odds and ends of problems are not going to be interested in taking on extras in order to have one less exacerbation every 3 years. But we'll see.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1140808231489272632006-02-24T13:10:00.000-06:002006-02-24T13:18:00.066-06:00Raising money for research and durable aids<a href="http://photos1.blogger.com/hello/30/6300/1024/DSC01277.0.jpg"><img class="phostImg" src="http://photos1.blogger.com/hello/30/6300/320/DSC01277.0.jpg" border="0" /></a><br />This party that moves from town to town is planned for September 16, 2006. Bikers seem to have much social awareness as they also have fun. The pictured booth was at the Lincoln bike show last Sunday.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1140197012982891532006-02-17T11:31:00.000-06:002006-02-17T11:24:34.996-06:00Have you ever twisted BOTH ankles?Due to balance problems, but much more due to very slow reactions, I fall very poorly. Tripping over a seat cushion on Tuesday left me with both ankles twisted. There is a very strange feeling to limping on both. It should only be one at a time.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com2tag:blogger.com,1999:blog-13551298.post-1140196963739561752006-02-17T11:22:00.000-06:002006-02-17T11:22:43.910-06:00<a href='http://photos1.blogger.com/hello/30/6300/1024/DSC01240.jpg'><img border='0' class='phostImg' src='http://photos1.blogger.com/hello/30/6300/400/DSC01240.jpg'></a><br />Freshly injured. Although the left looks worse, the right was actually more injured--as in re-injuries from my January fall.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1139355501030429782006-02-07T17:40:00.000-06:002006-02-07T17:43:18.060-06:00Here is what happened for January and February<a href="http://photos1.blogger.com/hello/30/6300/1024/back%20entrance%20to%20my%20apartment.jpg"><img class="phostImg" src="http://photos1.blogger.com/hello/30/6300/320/back%20entrance%20to%20my%20apartment.jpg" border="0" /></a><br />Sidewalks look like not too much of a problem . . . but watch out!!!Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1139355564362573052006-02-07T17:39:00.000-06:002006-02-07T17:49:33.046-06:00<a href="http://photos1.blogger.com/hello/30/6300/1024/emergency%20room%201.jpg"><img class="phostImg" src="http://photos1.blogger.com/hello/30/6300/320/emergency%20room%201.jpg" border="0" /></a><br />broken arm diagnosis<br /><br />I was trying to nap at home for the first several hours after falling. I finally realized that this was more (and slightly different) pain than the usual and got myself to the emergency room.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1139355253154623292006-02-07T17:38:00.000-06:002006-02-07T17:50:41.903-06:00<a href="http://www.fabrica.it/flipbook/flipbook_player.php?id=1139354775-7213362209&r=index.php&amp;amp;keyword=&p=1&type=&PHPSESSID=de75915f27d590cbe79c1e6e1856f264">Flipbook of the fall which jammed my elbow and shoulder up.</a> I had a bruise on my shoulder from an inside impact of my own bone. Since it was a chip on the head of my lower arm bone, there was no cast. Interestingly, the bone doc gave me a corset-type-cast for my ankle which must be out of it enough that I didn't feel much pain there.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1139355408099740452006-02-07T17:36:00.000-06:002006-02-07T17:36:48.126-06:00<a href='http://photos1.blogger.com/hello/30/6300/1024/ankle%20cast.jpg'><img border='0' class='phostImg' src='http://photos1.blogger.com/hello/30/6300/320/ankle%20cast.jpg'></a><br />ankle "cast"Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com1tag:blogger.com,1999:blog-13551298.post-1139356601015247932006-02-07T17:25:00.000-06:002006-02-07T17:55:14.940-06:00<a href="http://photos1.blogger.com/hello/30/6300/1024/flourish.0.jpg"><img class="phostImg" src="http://photos1.blogger.com/hello/30/6300/400/flourish.jpg" border="0" /></a>Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1139093447844157092006-02-04T16:49:00.000-06:002006-02-04T16:50:47.866-06:00Forgot that I forgetMy bedroom and bathroom floors are all freshly mopped and all of my towels and some of my blankets will soon be freshly laundered because I turned the bathtub on and went to write an email (and entirely forgot about the bath, thereafter).<br /><br />Cats just sit there and look at disasters happening. You'd think one of them would come and get me.<br /><br />It's funny how easy it is to revert back to thinking that you can count on your memory. I guess I forget that I can't count on it.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com5tag:blogger.com,1999:blog-13551298.post-1138769007837249792006-01-31T22:43:00.000-06:002006-01-31T22:46:28.216-06:00<a href="http://photos1.blogger.com/hello/30/6300/1024/DSC01195.jpg"><img class="phostImg" src="http://photos1.blogger.com/hello/30/6300/320/DSC01195.jpg" border="0" /></a><br />Information and visual aids for college students on the insulation that myelin is for nerves. Lincoln, Nebraska has a vibrant M.S. community, already apparent during my first month here. This is public speaker and Nebraska M.S. Society board member, Leatha Johnson.Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1135592707644222512005-12-26T04:23:00.000-06:002005-12-26T04:25:07.656-06:00This is fun--do one too!<a href="http://www.fabrica.it/flipbook/flipbook_player.php?id=1135592316-6531224226&r=index.php&keyword=&p=1&type=">My cellist flipbook</a>Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1135583083791094252005-12-26T01:32:00.000-06:002005-12-26T02:14:15.190-06:00Maybe M.S. disturbs heat shock proteins and we should take aspirinFrom "The Hot Brain" by Carl V. Gisolfi and Francisco Mora (MIT Press, 2000.)<br />"Heat Shock Proteins [HSP] as Cell Thermometers, Stabilizers and Chaperones" (p. 174)<br /><br />"In addition to the survival benefit associated with HSP accumulation through training and heat acclimatizations, numerous therapeutic benefits of HSPs are emerging, (Ezzell 1995) [Ezzell, C. Hot stuff: Medical applications of the heat-shock response. <span style="font-style: italic;">J. NIH Res.</span> 7:42-45]. For example, hearts from mice genetically engineered to contain human HSP70 genes recovered twice the contractile force observed in control hearts following ischemia and reperfusion. Scientists are now searching for compounds that promote HSP production. One such compound is aspirin, which acts to induce heat shock factor (HSF).<br /> HSF is the transcription factor that regulates HSP70 gene expession as a result of binding to the regulatory elements of the HSP70 gene. The heat shock response also improves the success of organ and tissue transplantaion." (pp. 178-179)<br /><br />Very interestingly, the writers say that heat stroke, which can cause neuronal damage or sometimes death, may generate from either the gut <span style="font-style: italic;">or </span>else the central nervous system because a hot temperature is responsible for cascading events in both and it's unclear which of the two suspects leads the damage. (Charted on p. 168.)Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0tag:blogger.com,1999:blog-13551298.post-1134951425124009362005-12-18T18:17:00.000-06:002005-12-18T18:17:05.136-06:00<a href='http://photos1.blogger.com/hello/30/6300/640/5a.jpg'><img border='0' class='phostImg' src='http://photos1.blogger.com/hello/30/6300/320/5a.jpg'></a><br /> Cecilia / punionhttp://www.blogger.com/profile/07988709485430298725noreply@blogger.com0