comment applicable to MS from the Dao Je Jing

What is most perfect seems to have something missing;
Yet its use is unimpaired.
What is most full seems empty;
Yet its use will never fail.
What is most straight seems crooked;
The greatest skill seems like clumsiness,
The greatest eloquence like stuttering.
Movement overcomes cold;
But staying still overcomes heat.
So he by his limpid calm
Puts right everything under heaven.

Waley 45

About Cognitive Changes in M.S.

A month ago my MS specialist and I were pleased that I’m doing well. He personally appreciates my training and abilities in classical music. He suggested that I try to do something with my music.

For the last month I have been wondering why and how I came to terms with not doing much at all in music. Some conversations with my aunt have given me some insight.

Aunt Roberta is 77. I recently moved close to her. We found that we could talk only to each other about certain cognitive changes. Somehow, we were both no longer able to read books, no matter how much we loved them or wanted to read. I guessed that brain atrophy, either from M.S. or from aging, was probably the culprit. We commiserated about missing books.

Then Aunt Roberta discovered that she had a removable brain tumor—the size of a croquet ball, no less! With some trepidation, the operation was accomplished nicely. It has been a month now and Aunt Roberta can read books again. I had not imagined that either one of us would ever be able to regain the ability to read. I’m so thrilled for Aunt Roberta.

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. Both books and performances have a substance that is much more dimensional than I am currently discerning. I know this because it was formerly my privilege and pleasure to enjoy music and reading on a daily basis. (I miss that old self but I do not expect such gifts. They are blessings, not rights.)

In fact it was formerly my job to be fully immersed and productive in music because I am a well-trained classical musician. But here is an example of what happened with me after I was diagnosed—but before I quit working as a musician:

A conductor of a university orchestra in Washington, D.C. asked me to join in for a couple of rehearsals and the concert. Bringing in experienced players to bolster the back of sections is a technique that strengthens student performances. I was being paid. I was very comfortable being paid. 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. During the rehearsals the conductor sensed my positive contribution and asked me to support some solo passages too. The repertory was quite familiar to me.

As I was comfortably performing the concert, with some intentional leadership, I suddenly caught an odd look from the conductor. As I wondered about his thoughts, I realized that I was two measures off in comparison to the orchestra.

I cannot explain how impossible that would be. The absolute first lesson for any orchestral work is: listen to what is going on and do not play in the rests. I was deeply shocked. How would it be possible that I am hearing but not hearing? How would it be possible that I could not do the job that I had been so adept at for so many years? How had my getting lost happened? I was deeply, deeply embarrassed. My gaff was so unprofessional.

To know that the body and mind that you have relied upon is profoundly unreliable perturbs a person’s entire sense of existence. (M.S. is an existential problem in my experience.) 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.

There is a movie about the cellist Jacqueline Du Pre. She played wonderfully and fiendishly well, in the late 60’s and 70’s, as a soloist with many world class orchestras. Her M.S. hit her strongly. 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. She does not sense the moment that she should play. The conductor cues her a few times. Jackie is lost in the cognitive soup. That is how drastically we can change due to the cognitive effects of M.S.

How did I come to terms with not doing much in music? A daily confirmation that previously grasped dimensions no longer exist for me permeates my experiences. I remember with deep appreciation of natural gifts that were once mine. Things have very tangibly changed. I cannot pretend otherwise.

I will try to follow the doctor’s advice. Please tell the conductor to cue me largely.

Science by streaming video

These lectures often include discussion of current research and, by implication, indicate current scientific-culture trends.
http://www.videocast.nih.gov/

Vignette on who is a good doctor

When 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.

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.

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 Heidi Crayton in Washington, DC.

Neurological Overloads That Amaze

Performers 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.

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.

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!?

Looked upon: turned to stone. Inertia in early civilization.

Santayana 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.

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."

The Sense of Beauty: Being the Outlines of Aesthetic Theory by George Santayana, Charles Scribner's Sons, New York, 1936, p. 178

Inertia supports being located without of it all. (Where does inertia come from!? What does it ultimately mean for an organism/self?)

How one drug is sizing up

Considering 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 Biogen // trying to stay profitable.

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.

Raising money for research and durable aids

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.

Have 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.

Freshly injured. Although the left looks worse, the right was actually more injured--as in re-injuries from my January fall.

Here is what happened for January and February

Sidewalks look like not too much of a problem . . . but watch out!!!

broken arm diagnosis

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.

Flipbook of the fall which jammed my elbow and shoulder up. 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.

ankle "cast"

Forgot that I forget

My 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).

Cats just sit there and look at disasters happening. You'd think one of them would come and get me.

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.

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.

This is fun--do one too!

My cellist flipbook

Maybe M.S. disturbs heat shock proteins and we should take aspirin

From "The Hot Brain" by Carl V. Gisolfi and Francisco Mora (MIT Press, 2000.)
"Heat Shock Proteins [HSP] as Cell Thermometers, Stabilizers and Chaperones" (p. 174)

"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. J. NIH Res. 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).
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)

Very interestingly, the writers say that heat stroke, which can cause neuronal damage or sometimes death, may generate from either the gut or 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.)

On not seeing and on courage

My left eye is pretty worthless and my right eye can go too. My eyeballs are in good shape. I have 20/20 vision! The reason I can't see is my brain can't see, especially through my left eye.

The thing is, it's not just vision-vision that's going. It's also cognitive "seeing" that is getting whited out and blurrily unidentifying what I look at. Perhaps it's a whole side of my brain that is more affected, eventually leading my whole brain into not-seeing.

I'm very scared and here is how I just noticed it:

I'm seeing a talk-therapist because I'm a solo person and sick and just have made a move to a new place. I'm going in case it helps. So she said: "Look how difficult it is for you to navigate the system [that is our current culture] and you are intelligent! Imagine how people with functional I.Q.'s of 75 getting by." I said, "It's not a kind culture at the moment."

Since she said that yesterday at 2 p.m., depression has dominated my psyche.

If I don't talk to anyone then I don't get so depressed. Now that I have to explain and explain, I don't know if I really want to live like this--dwelling in explanation of loss that no one would imagine if they didn't have to.

If I change the TV channel, I can't remember what I was watching. So I just flick back to see. Big deal, right?

But I present to others as 'intelligent' (due to my originally inherited abilities, and an understandable initial assessment, I understand). So, even as I was complaining to the proper authority about cognition problems, the authority instinctively couldn't imagine that the 'real cognitive' complaint applies to me.

Mind you . . . my real complaint is actually real fear of real disabilities. So here I am, 26 hours later, having slept heavily (depressedly) for most of those hours, feeling the fear brought on by talking, and seeing the courage that I will need.

The other part of the fear: lack of kindness between people that I know I don't want to see. We with M.S. need so much courage!

In fact, we might have to be leaders in hoping for and asking for kindness from people

. . . might this be the foundation for some very important contributions to the world from us? Perhaps living the need well is our important job for life's sake?

[I'm quite scared. I can especially tell when I feel so depressedly exhausted.]

My neighbor and myself on last visits to D.C. government offices.

I've moved to the Midwest

It's wonderfur-l to have two cats to focus on. We all got through many stresses. One of my cats has a cold now that we are cosy in unusually frigid weather. But we made the whole move FINE! (Minor symptom changes and the usual pains rather than getting whacked with something.)

So I stopped at the SSA office here to sign up for Medicare Part B because my ex-employer has instructed I must have it in conjunction with health insurance premiums that I pay. People in the farm country of the center of the U.S. are . . . hardy souls [should I say]? Politicians run ads over and over on how we all need to take responsibility for ourselves in order to continue to create the state that the politician was raised in as a child, [which is also a not-so-covert comment on changing demographics.]

Coming out of the SSA office I became determined to consciously hold my healthy-self-ground rather than slouch into playing some pathetic role trying to DEMONSTRATE that I deserve or visibly-earn support from the government or whomever.

Is it good or bad that folks do not have enough imagination about other people's pains to at least give people room to be? It is good that perhaps they haven't suffered some things. But it's bad that people miss real connections that we offer each other by recognizing we are all oh-so-very-mortal.

So I also found a therapist today to address my defensive feelings, as well as everything about this new place (close to where I was born 42 years ago), not to mention to deal with the same old fallout of living ill for so long with a brain disease. Say it: "a brain disease" . . . this term may be more taboo than real sexual terms, discussing peace, or, generally, facing any lacks of absolutes.

We have to fear only fear itself. F.D.R. WWII

Why is it always surprising when pain comes back?

To think that I've been humming along for 2-3 weeks virtually without pain. What a dream. The eye-ache, arm ache, leg ache is back. Dummy is back.

To think that there were minutes that were not essentially annoying and trying to live.

Happiness is a lack of certain things.

But, now that pain rules again, a pile of my concerns don't bother me any more.
(For example: filling out the questions for a sleep study.
Someday there will be a 'study' establishing that
the reason MS symptoms are 'not very well known'
is: we are past explaining stuff to people with so little experience--
especially more than one time.)

When I was more well last week I actually had a dream one night. I miss being able to dream. I'm sure it's connected with waking up exhausted. What was my dream? I was just deeply, sadly crying. But it was the best connection with my subconscious in months if not years. I woke up that morning and felt as if I had actually slept (for a change).

In awake life I sometimes have tears and sadness well up in my body but then I step it into knowing and feeling the courage that is in the situation. Courage comes body-wise and feelingly from the same source as tears. It can feel the same as crying only better.

But in my dream I was just crying.

The best nugget from the M.S. doc

Doc says that many therapies are coming on. He says that in a couple of years we should have a huge difference in available treatments -- as much as when the interferons were a whole new day when they came on board.

M.S. Doctor Questions for today's appointment...shared with you

1) DO INSURANCE FORM, please
2) Liver-blood test, please. [Thyroid hyper/hypo test too?]
3) Any advice on my suspected left-eye/nose chronic infection? See my photo.
4) Are skin brown spots and crusty patches a side-effect of interferon? or #3? [I am 42 years old, true.] See my photos over time.
5a) Any advice on Tysabri?
5b) How about 6 months on, 6 months off?
6) Very tired of chronic fevers which do make me feel bad (definately cause bad eyesight) and lead to too much ibuprofin (due to at least M, W, F Rebif doses, plus more). (I think I'm wearing out my esophagus.) Time for Copaxone, don't you think? See bonus Lancet report on Copaxone.
7) Constant and frequently severe fatigue.
If I miss Provigil, I don't get out of my chair all day--it seems too difficult!
I suspect bad sleep as a major contributor.
a)I wake up exhausted, especially when I do not dream (which is my norm for two+ years)
b)I LOVE it if I dream! It means my mind will be working much better afterward.
c)Perhaps sleep apnea is contributing to my M.S. problems
1)I snore
2)My family snores; my diagnosed brother has a machine that has helped him a lot.
Any medical advice on sleep problems?
8) The only noticeable improvement of pain (which has been constant within my left leg, right arm, and back of my neck; frequent in my left eye/head and on my skin, especially my left face and left shoulder/arm, as well as behind my left knee on my calf; and constant on the bottoms of my feet when standing,) has occurred after I started turmeric ingestion. I started at the end of February and noticed improvements beginning at the end of April and after. The same with the only noticeable improvement I've ever experienced with memory function. I am constantly lost and have to work very hard to keep a line of thought. It will not happen naturally. This does get worse and better a little.
I'm suspecting that anti-inflammatories and anti-oxidants are much more effective than … Neurontin, for example. [I admit that Elavil was a necessary treatment for skin-on-fire for me. I took it for 8 months and have been hoping to stay off of it due to its contributing to cognitive problems.] Any advice on anti-inflammatories and antioxidants? (See Dutch study.)
9) The only other thing that has happened to me that made me feel better (including steroid drips which never made me feel better): Ketek!!! (a new replacement antibiotic that I had to take for 10 days for the infection in my nose)
Any possibilities along this line? Previously, I've never liked using antibiotics. They, in the past, made me feel hung-over.
10) Perhaps start Hormone Therapy? Can you prescribe? Lowest standard dose, please. (The concept makes sense to me.)

I will try to post the doctor's responses too.

1982

Evokelution: The next philosophical/scientific "wave of understanding"

Evolution as a scientific idea showed up simultaneously in many places as it became a legitimized idea. Previous to the Enlightenment / world-expansion-of-trade, it wouldn't occur to people that things changed that much because things didn't change much--relative to a person's lifetime--until trade and philosophies picked up their tempi, and then we noticed evolution!

Today we watch international corporations create themselves and expand into creatures larger than countries. Relative to that, as people, we are little cells and our institutions are cell colonies within the huge organism.

So, just as some of the best social science research has established that people participating in communications within events generally cause more positive outcomes for all involved parties (whereas imposed actions upon people tend to create even more problems) [e.g. in risk assessment science], we will know that we will want to be heard from within the bodies of the huge creatures inhabiting this planet--the corporations. It's kind of like how we feel about our right to vote, plus.

So, suddenly biology is going to be about communications from cells, and maybe colonies of cells, toward the more largely-motivated, incorporated, self-organism. (Mostly cells "should just communicate". Ignoring cells' communications "causes" generally less desirable outcomes for the cells and the whole organism.)

Biology is going to be looked at as the whole organism attempting to honor cell "truths", just as we, as individuals, are going to be hoping that we are heard by obviously motivated corporations that resemble gigantic organisms.

Call the new science: the noise placed on top of other noise to distinguish beneficial pattern or order . . . Responder-lution . . . No . . .

Evokelution.

Actually, simply:
Resolution.

It caused this essay.

I'm moving

The costs of living in Washington D.C. are prohibitive, especially long term. Later I will post about the helpful situation that I've found. You have to be a genius to be sick. You also have to be very lucky.

Existential problems left and right: If I'm not my own character, then who am I? If I'm needy and not [as much] of a contributor, then what am I worth?

I'm sure these are only too familiar musings for all of us with M.S.

An online toy for music/math people

WolframTones -- An Experiment in A New Kind of Music

Do you ever wonder . . .

if it isn't all of the ibuprofin that we take that delays our M.S. onsets, and perhaps the Rebif or Avonex or beta interferons are not as important as purported?

(Don't mean to confuse the science, but it seems that everyone has always taken a lot of ibuprofin in order to control the temperature that the shot causes.)

Painkiller, a poem by J. Mayhall

Ardent work is a painkiller,
like just your handwriting on a page,
and doing mathematics--that connects with central
neurological tracks, vast circulatory blood-

lights, into aphrodisiacal
forgetfulness. And the more aching a line
of poem, the more it lulls.
Intense dancers on broken toes

insist they never noticed. Like Tchaikovsky
using his tears on laboring music scores, the
melody narcotic. Or running the good
race eludes the hurt.

Mind over matter? It's the brandy gift
of life. Or from a crack in Nothingness--
creation of the world. And must have
been some backbreaking,

godless job. Enormous, long time
over-hours. Working like a dog, that
sweet analgesic postponement
of the End.

by Jane Mayhall
Sleeping Late on Judgment Day, Alfred A. Knopf, 2004

My 24-hour-cycles last 25 1/2 hours

A couple of days ago I went to bed at 8 a.m., then 10 a.m. yesterday, and probably noon today. I wake up at dinner time. It's just like having jet lag.

Although I avidly try to avoid moving to a later and later bedtime, my body's clock is ultimately in charge. If I have pain that disallows sleep, I've immediately lost any hope of a bedtime that makes sense. With pain, my nurtured bedtime proves to be quite unsupported in comparison to what my body's clock has known as "days".

As with many symptoms, it has taken me a long time to realize my lengthening sleeping cycle (noticed for 15 years now) was largely due to brain/pituitary functions. It often seemed there were other reasons...

multiple sclerosis

In my hands . . . out of my hands / how it works

Every single person I've relied upon and my own body has abandoned me at one time or another when I've needed them. True--some people have done it much more lovingly than others.

But we who are ill know that you can only try to learn how best to take care of yourself and your body and then go with the flow of whatever your body allows in order to live as much as possible.

In the same way that we deal with our bodies, we reach out to those who have abandoned us. It works best to fully accept bodies and people that fail--as long as we intend to go onward.

My body and my people have their reasons they abandon me. I will never know all of their reasons.

I do lose body functioning and I do lose people and I do miss them intensely.

(Postscript: the intention to go onward may pass beyond the limits of the mind [read Jean Amery].)

Wake-up by choking

I wonder if I've choked often during the night?

I've already had pnemonia that lasted at least 10 months because I was choking so much. (When food or spit stuff gets in your lungs it easily infects your lungs.)

Keep in mind

that I can't keep things in mind.

Poor granny, wandering room to room, wondering why she's there. It's a symptom connected with reduced brain mass caused in my case by M.S.; caused in granny's case by aging. In medical research at this time, that's as much as we know about the cause of that symptom.

Pshaww on research. You will have a hard enough task trying to keep in mind that we can't keep things in mind--if you care about me or granny.

An Essay

Why Time Flies as You Age
And Other Insights from a Person with Multiple Sclerosis

I have some “brain damage” from multiple sclerosis. It resembles the same brain damage that occurs naturally in aging, but accelerated.

One gage that I use to measure the level of damage that is bothering me is how long it takes me to read a traditional clock that has hands. Only last week it was taking me about 10 seconds, which is a very long time if you think about it. In fact it was taking so long that if I was with other people I would just ask somebody to read it for me.

Two days ago I looked up at the clock and read it immediately—just like I used to be able to! In fact, I had also realized that day that I was feeling like my old self a lot. It surprised and intrigued me (and made me hope that it’s connected to some anti-oxidant supplements that I’m taking so that there is hope.)

It is typical in the progression of multiple sclerosis that a person suffers some special damage such as loss of eyesight in one or both eyes and then one day recovers it. Evidently, the brain either fixes the damage or learns how to work around it. The popular name for the process is “plasticity of the brain”.

Plasticity must work for everyone generally, but in overall aging and in multiple sclerosis, as measurable by brain atrophy, we tend to get to the point where some of disturbed processes are past repair or un-reroute-able.

For more than three years I have been having a feeling that I’m not sure if I’m remembering everything that I should remember. It’s some sort of impaired memory. Often I will walk into a room and wonder why I’m there. I have a chart on the refrigerator to mark that I’ve taken medicine since, sometimes, searching my memory brings up no information (which is scary).

Why do I suddenly feel like I know what I’m doing? Why is it so easy to read the clock? Why does it feel that there is so much more time available to me?

I realize that I have been very nervous in an unrelenting way for more than a couple of years. When you are always wondering what you are forgetting you feel constantly stressed in a certain way. One of the results of (necessary) wondering: time flies away from you. It may only be a perception without respite—that there is not enough time to know what it is to be known—but it makes every glance at the clock accompanied with something like the following thought, “Oh my! x hours have passed and in the bit I have left I don’t know if I’ll be able to reach an understanding/accomplishment of what I need to understand/accomplish. I better hurry it up.” Every anniversary and every cyclical event is greeted with, “Wait! But it was just yesterday last time—I don’t know if I’m prepared for this again.” There is a constant stress to it. I know because mine just disappeared! I guarantee, there is marvelous comfort and strength in feeling confident about what you think you know.

The stress hasn’t been enough to kill me with a heart attack although I imagine it could be very bad under certain circumstances. Notice: the more heartfelt responsibility one has, the more likely it is that (even expected) brain failure will lead to heartbreak. People with memory problems need to have much courage. It helps to be smart and lucky too.

Luckily, it is my privilege, with this intriguing reprieve of my cognitive problems, to gain insight on some natural effects of some rather typical memory loss—the type we all hope to live long enough to experience and the type that people with multiple sclerosis routinely need to deal with.

I see why time speeds up as you age and, why despite so much hurrying, impaired memory, of course, contributes to accomplishing less than when I didn’t hurry. I see that sense of time is somewhat perceptual. A general perception of being lost, without enough time to become un-lost, is reinforced by the fact that effectiveness, on the whole, is negatively impacted by funky memory abilities. I see that learning to live with nervousness can be necessary and is probably a human development which is common. I see we will have to wonder what we are forgetting and know that it causes stress. If there are tools available, such as, a chart on the refrigerator, we had better use them to mitigate stress. However, tools apply for only a few of the problems. You cannot have a chart for every hour and every weekday and every task. (Anyway, if you do, you won’t remember which the right chart is—or where you put it. But try not to worry too much.)

multiple sclerosis

I don't like to wash my dishes because I break so many of them.

This does not mean that I need to be counseled to take low dose antidepressants in order to boost the seratonin in my brain in order to engender a more restful sleep at night in order to improve my coordination and concentration abilities and thus be able to not break so many dishes.



It means I wash my dishes less often.

[I would rather have medical people work on expanding knowledge than waste time sending out ultimately ridiculous advice.]

Trained as a cellist.

Try this lotion !

I have tried at least a couple of dozen lotions in the last 5 years, but this is the only one that has a consistent (for 4+ years) and immediate and relieving effect on itchy-numbness, tingly skin, uncomfortable skin and/or ACHING, buzzing feet:

{Nature's Gate} Herbal Skin Therapy Hemp Lotion

Only certain Whole Foods Stores here, in D.C., stock it. It runs $10 for a rather large, 18 OZ, pump bottle of lotion. I always have at least 3 because I don't want to run out.

Nothing else in my experience feels good in the way this lotion does. Several people with M.S. that I've tested it on also feel it immediately. Try it yourself! There is something really cool about whatever ingredients give relief in this lotion.

Much going well (which counter-intuitively makes me cry)

Feeling better, remembering more, means glimpses of old, youthful and honorable intentions that I had about "life" and "love". I miss those goals.

Plus, (it's probably the same for any aging,) I'm disappointed at what I achieved.

It wasn't unreasonable for me to expect to still be able to work at this time--age 42. This not-being-able to work is a huge curve-ball.

Meanwhile, I feel very lucky to have figured out that Qigong is a very good exercise. It took me 4 years to "find" without the help of any of my dozens of medical or psychological experts. Maybe there's been passing mention in MS publications or on listings of alternative therapies but nothing discernable in important ways to me. The advertising from {Sounds True} gave me the hint. Their Qigong training is a new DVD/CD/book offering. The ad was my clue. After 10 days, I'm still highly recommending Qigong if you have MS -- for pain relief and general well-being. Try it! (Even 10 days of nicer feelings is enough to make it worthwhile.)

Not quite the correct center of gravity--according to Qigong it's at the belly button.

Qigong

The bottoms of my feet ache so much. It's as if I haven't been allowed to sit for 48 hours straight (all of the time).

So I asked the good doctor about a power chair, for all practical purposes. (Power due to large fatigue generally.) But I can walk so I won't "qualify medically".

I'm trying to think how to manage the chair purchase that would be such a helpful tool (especially on the days when my eyesight is so poor that I cannot drive which can be often now).

GUESS WHAT HELPS MY FEET?! The standing meditation of Qigong which I've learned about through a {Sounds True} DVD/CD/book by Ken Cohen.

This seems the opposite of what I need, doesn't it? I have been getting OFF of my feet at every opportunity. I have been tenderly, half-heartedly using my feet.

I have not been standing with any "grounded-ness". You might even say I lost connection with the ground. This is the opposite of what is taught in Qigong. Evidently it's necessary for good health that is connected to good energy flow that a person have a rootedness that allows "toxins" to move down and out as well as allows good "chi" energy to flow up and through.

I know that as I tried to have my weight evenly distributed throughout my feet, I realized I hadn't done this for ages--meaning I hadn't stood solidly. I realized that my foot pain was being relieved immediately. The standing meditation continues until anyone's feet would probably get tired. Then the master instructs to massage your feet by rolling your own weight across and around the feet--as you continued to stand. It was the best foot massage!!!

There is much else in these repected Chinese exercises that directly enhances health that is affected by multiple sclerosis. I can't recommend it enough at the moment. I imagine this will only become more true as I practice. We'll see.

This was me just a few years ago in Trio Vivo.

Let's eat!

I think something here has helped: Supplements

{Solgar} Turmeric root extract 1800-2700 mg [4-6] per day
{Health from the Sun} Total EFA (flax, fish and borage oils) 2400 mg [2] per day
{NewChapter} Zyflamend (inflammation "response") ca. 1600 mg [2] per day
{Solgar} MaxEPA (fish oil concentrate) 2000 mg [2] per day
{Nature's Way} Ginger root 1650 or more mg [3-6] per day
{Nature's Way} Schizandra fruit 1160 mg [2] per day
{Solgar} Vitamin D (cholecalciferol) 400 IU [1] per day
{365} Alpha Lipoic Acid (antioxident) 500-600 mg [5-6] per day
Aspirin 365 mg [1] per day
{NewChapter} Neurozyme ("supercritical" mental clarity) ca. 1200 mg [2] per day
{Solgar} Eleuthero root extract 450 mg [1] per day (Discontinued 6/2005 to try control costs)
{Trader Darwin's} High Potency Vitamin B "50" ca. 900 mg [1] per day
{Dr. Weil's} Evening Primrose Oil 1000 mg [1] per day (Discontinued use 6/2005)
{NewChapter} Probiotic CoQ10+ (enhances cellular energy) 22 mg [1] per day (only 1 due to cost) (Discontinued 9/2005 to try control costs)
{Trader Darwin's} (odorless) Garlic 400 mg [1] per day
{Nature's Way} Black Cohosh root 540 mg [1] per day
{Nature's Way} Reishi (standardized; tonic for vitality) 376 mg [1] per day (replaced with MycoMedicinals 6/2005)
Brewer's yeast (Discontinued use 6/2005--taste is no fun)
Added 6/2005:
{New Chapter} MycoMedicinals Mental Clarity: Lion's Mane Complex to Stimulate the Growth of New Nerve and Brain Cells 1020 mg [1] per day (only 1 due to cost)
{New Chapter} Supercritical Antioxidants: 190 mg turmeric, 150 mg green tea, 7.5 mg clove bud, 7.5 mg ginger, 7.5 mg parsley, 7.5 mg peppermint, 7.5 mg rosemary [1] per day (only 1 due to cost) begun in June 2005
{Trader Darwin's} Ginkgo Biloba tablets 120 mg [2] per day begun in July 2005

I hardly worry about eating becasue these are so many pills per day. I know it's ridiculous. But I think it really helps to feel better. Here's why:

Last February I was having requisite appointments and blood tests and new MRIs for new doctors (trying to get set up for Tysabri). I came out of one doctor's office and felt so sick and tired of feeling so sick and tired.

I decided to stop by the health food store and "get myself some treatment" if only as a gesture, in hommage to having once felt better. I picked up anything that I remembered Dr. Weil advising which was the alpha omega -3, -6 and -9s in the Total EFA formula and turmeric. (I had a basic vitamin supplement at home.)

When I had my first few days a bit free of pain at the end of April, I crossed my fingers that it was connected to turmeric and what I was trying and then went out and got everything recommended by Dr. Weil. (See drweil.com) Furthermore, the research highlights at nationalmssociety.org only supported his ideas and my experiment.

Nothing the doctors have given me have made me feel better (not including the Elavil that toned down some nasty skin-on-fire neuropathy that I used for 8 months). Rebif (and Avonex) are prophelactics: perhaps slowing down progession. (Who knows if it's helping? Who will ever know for sure at an individual level?) It's true I wouldn't be sitting up if I didn't have the lovely Provigil. (Or maybe I'd be stoking with caffeine and thus simultaneously stripping my body of nutrients just to write an email or stand up a bit.)

The eye-aches from optic neuritis (a type of head-ache), the spinal aching, the aching left leg and right arm, the ability to remember and concentrate and smell and hear, my strength and my utter happiness to not be consumed with pain have significantly improved since the end of April. It's far from perfect. Many things still don't work. I have real problems with clumsiness and balance and sleeping and still have aches and almost slip into bad eye-aches and don't see well and lose it in the heat and don't like the sunlight. But I'm so HAPPY to feel pretty good overall.

I hope I feel a better because of great spices! I'm putting some money into it for at least a while.

multiple sclerosis

published in 1918, colored in 2005

summer flowers on the front porch 

In the old days . . . 

One of my last students

It's hard to imagine that I'm simply dragging this body about, even as it looks (half-way) quite normal. I'm just returned from prodding and insisting that my good young student actually play in tune. She can do it. She has taken many steps to aquire some skills. I begged her to go to another teacher last summer but she and her mother insisted on continuing lessons. I just feel so guilty because, no matter how instructive my advice might be, the substance of private classical music instruction is one-on-one demonstration. I demonstrate clumsiness and inertia and making do techniques. It's a being that is not for imitation (unless necessary due to circumstances).

Inertiatics need representation too. This way of being is not by choice. I used to teach 35-45 students as I held 4 other major jobs (prinicipal cellist of a regular orchestra, cellist of a trio, working with a violin maker, going to grad school, free-lancing including touring . . .) At least two, full-time jobs is more my style. (Not any more.)

Taking it easy 

Hi there 

My right arm aches constantly, is that because I am (was) a cellist?

By this first post I have lived through more than a couple of years of chronic pain. Most of the time it's not been terrible, just annoying. But I'm balancing on the edge of falling into these eye-aches that are nasty. There is where eternity exists: when it hurts blindingly and there is no sense of it ending because all of time is in that pain moment.

But why go there? All I have is a bit of headache, dizzyness and right arm ache. It's time to party. Happy days are here.

Now-a-days, to me, this kind of looks like a world that is a party to join, even including Don Quixote-ism (a special kind of party), as long as you are not prohibitively suffering.

Am I a bad citizen when I'm so busy suffering? Maybe this is yet another basis of arguments for more medical research on pain relief. There are whole categories of pain that opiods, epileptic, and anti-depressant drugs, not to mention aspirin and NSAIDs, don't touch. I don't know if my aching arm isn't more like phantom limb pain than it is "spasticity" which I guess is a muscle pulling against itself and known as a "typical" symptom of M.S.

It intrigues me that pharmacology is held in such high esteem. One of the best drugs around (aspirin) developed from "folk usage" of willow bark. When I worked at the Institute of Medicine it was always held up for example that aspirin would never be approved by the FDA according to present rules. Why do we so much trust that the drugs that get approved are any good?

Have you noticed how many commercials currently solicit users of various drugs for "substantial cash awards" if you have had certain negative developments in your health? Don't we all know that there are real risks in any drug treatments? What is this particular economy of litigation? (Or are we truly observing a major correction in the incompetence of the FDA?)

Musings will diverge, depending on personal experience of pain, regarding yesterday's negative Supreme Court opinion on marijiana. Somebody must have put a voodoo curse on the weed to make it give certain people heebie jeebies whenever it's even mentioned. I love the write up in the book "Botany of Desire: A Plant's-Eye View of the World". Michael Pollan has the idea that the plant latched on to humans creating a certain evolutionary success. In my mind the thousands-of-years relationship between people and weed puts its neuroprotective properties into the category of much-better-tested-than-the-FDA-could-ever-test. Did you know that there is an entire system of cannabinoid receptors in the brain along with dopamine and seratonin and all of the other chemical signals between nerves? Cannabinoid receptors probably are a neuroprotective system. It's under-studied (imagine that).

Too bad we are so busy being spooked by our fears on this topic. Once we start suffering from pain a lot, it's usually too late to go out there and do the research. It's like having a leaky roof that doesn't need to be fixed if it's not raining and that you can't fix if it is raining. Brilliant, huh?