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?