Wednesday, June 13, 2012

My Heroes


I admin a private support group on Facebook for folks coping with multiple sclerosis (MS) and other chronic diseases. (Private means you can’t find it with a search engine, so everything we say stays in the group and not seen by the public. You can only join by invitation of a member.) There are over 400 of us now. Most have MS along with a myriad of other diagnoses such as fibromyalgia, osteoarthritis, lymphedema, depression, migraines, and more. We have members with Crohn’s, Ehlers-Danloss, and cardiac problems. Some folks are caretakers of others with these diseases.

Every day, it’s a challenge finding ideas that can ease each other’s pain or keep each other’s households afloat, but we do it anyway, and we keep at it. We are living for a cure for each and every one of these ailments, and we are going to try to carry each other along into the future until the cures come for us all.

You would be amazed at the strength of our folks. So many are in constant pain while they raise their kids, care for their parents, or just keep up with life. They are all heroes. No matter how low a body is, there is always someone who offers a reason to cheer up, and who encourage us to press on in the fight.

We have few rules in our group. There’s the sanctity of the group – nothing gets copied out to other sites. There’s also a sense of civility. We are not rude. We do not belittle each other or compete to see who hurts more or knows best. Incredible! I am constantly humbled, and forever grateful. 

Monday, June 11, 2012

Growing Myelin – N-Acetyl Glucosamine


There are supplements that help our bodies fight the damage from multiple sclerosis (MS). The one I’d like to talk about now is n-acetyl glucosamine (NAG). N-acetyl glucosamine (NAG) is an enzyme and one of the 8 essential sugars, a monosaccharide. (It is sometimes called NAG but more properly, it’s GalNAc.) Bodies use NAG for repairs including cartilage, and the muscosal lining of the digestive system. It aids in insulin production and in absorbing cholesterol. It can help suppress pain, tumor growth and viruses.

In one experiment, in rats, those which took NAG saw remyelination. In other words, they got myelin coming back to cover the nerves that were bare of it due to MS. Humans and rats have a lot in common, and scientists think that NAG will cause remyelination in humans. The dose that’s recommended is 3500-4000 mg a day of NAG. Because NAG effects the gut, it’s important to build up slowly and find the amount that you can handle. NAG comes in 500 or 750 mg pills.

Table 1. What N-Acetyl-Glucosamine Does in the Human Body.
Nerves
May cause remyelination.
Osteoarthritis
Cuts inflammation, decreases pain, increases mobility; reduces swelling and stiffness esp. in knee and hip
Cartilage
Repairs damage
GI Tract
Repairs the mucosal lining; may help resistance to Crohns, and other bowel disease such as ulcerative colitis
Multiple sclerosis
Suppress damage of the autoimmune response; reduce or eliminate symptoms
Type I diabetes
Suppress damage of the autoimmune response; reduce or eliminate symptoms
Immune system
Boosts disease and illness fighting ability; limit spread of viruses within the body
Brain
Aids in ability to learn
Insulin
Aids in secretion
Cholesterol
Aids in absorption
Temporomandibular joint arthritis
As effective as ibuprofen in reducing pain
Wounds
Aids in wound healing

Side effects you might experience include diarrhea, gas, heartburn, bloating and an upset stomach. Caution: if you are sensitive to shellfish or iodine, this supplement may bother you.

Note: I am not a doctor, just a researcher. What you read here is not meant to diagnose or treat any disease. It’s just my point of view on the information. 

Sunday, June 10, 2012

Vitamins and Supplements - Good Deals!


I take a lot of vitamins and supplements for several reasons. I am trying to work, and to counter the stupefying effect of meds like Baclofen. Nutrients give me the best chance of overcoming the drugs without adding negatives. I am trying to help my body remyelinate. That is, I am trying to counter the impact of multiple sclerosis (MS) on my nerves. It slows the rate at which my body builds new myelin to keep my nerves covered and useful. Taking things like N-acetyl glucosamine (NAG) provides a way for my body to speed back up the process. I am trying to fight the impact of MS overall, by taking D3, B12 and others, and I am trying to be stronger and healthier. The prices for these supplements are pretty steep. I get the best prices for almost all of them on Amazon. They are often 40% off list price. Once a year, I pay $75 to be a member of Amazon Prime, and the rest of the year, I pay nothing for two-day air shipping from Amazon. It saves me a lot of money. There’s a link for the NAG I get from Amazon on this page.

Some things I get elsewhere. My B12 shots cost only a dollar apiece when I get them through Trim Nutrition. I’ve been getting my injections from them since early 2011, and have had no problems at all. The link for Trim Nutrition is on this page, too. 

How are you getting your vitamins and supplements?

Oils, Fats and Health

Fats consumed is important for anyone to manage, much less for folks with multiple sclerosis (MSers). A term you’ll see a lot is essential fatty acids (EFAs). Humans don’t make these, so they have to be consumed. The two EFAs that are important for human beings are alpha-linlenic acid, an omega-3 fatty acid, and linoleic acid, an omega-6 fatty acid. Some studies seem to show that MSers don’t absorb or transport essential fatty acids (EFAs) properly. Supplementing your diet with EFAs becomes critical.

Whether you have multiple sclerosis (MS) or not, balancing the omega fatty acids is important to promoting good health. Balance omega-3 and omega-6 fatty acids to promote health. The omega-6 to omega-3 ratio should be 2:1, 3:1, or 4:1. In other words, take 2 to 4 times omega-6 than omega-3.

There are three kinds of EFAs to be aware of: omega-3, omega-6, and omega-9. Omega-3 is alpha-linolenic acid (ALA), and is in fish oils, flaxseed, canola, soy, perilla seed, walnuts and walnut oil. High omega-3 suppresses inflammatory response. They help reduce heart disease, and lower LDL, the bad cholesterol. They reduce stroke; enhance blood vessel elasticity; and prevent build-up of harmful fat deposits in arteries. Omega-3 fatty acids contribute to brain and eye development, prevent cardiovascular disease, and help prevent Alzheimer’s. Fish oils include herring, mackerel, salmon, and sardines. But you can also get vegetarian DHA.

Omega-6 is linoleic acid (LA), which is in evening primrose oil (EPO), black currant oil, sunflower oil and seeds, safflower, peanut, cottonseed, rice bran, corn. and some vegetable oils. Too much omega-6 can be inflammatory and result in heart disease, cancer, asthma, arthritis and depression. Avoid cooking with them. Omega-6 oils work together with omega-3s, must be in balance (that ratio mentioned above).

Omega-9 is oleic acid - monounsaturated fat, and is , in sunflower, canola, olive, peanuts, pistachios, almonds and avocados. Canola and sunflower are very high in monounsaturated fats. They help reduce the risk of cardiovascular disease and stroke. Omega-9s are also produced by the body. They reduce key factors that contribute to heart disease and diabetes. They increase HDL (good) and decrease LDL (bad) cholesterol, and help eliminate plaque in arteries. The US FDA says 1 ½ tbsp per day canola oil can reduce heart disease.

The cell membrane is made up of fats and is constantly being remade. The gut and skin are quickly remade. Bones and cartilage are remade slowly.
Saturated fats make cells stick together. When cells stick together, you get clots, heart attacks, and strokes. Organs made of these cells become hard and inflexible, and result in atherosclerosis or hypertension. These cells are more prone to degeneration which may play a part in MS progression. Unsaturated fats are the building blocks of immune system chemicals, while monounsaturated fats are neutral for immune system.

It’s important to remember which foods and oils fit into which category of fat, so you can keep them in balance. Since fats interact with the immune system and with inflammation, it’s critical to MSers. That’s more than enough about fats for one day! Phew!!

Saturday, April 14, 2012

Miraculous Magnesium for Misbehaving Muscles


I'd like to pass on one of the things that has worked at reducing how difficult life with chronic disease can be. It is helpful for multiple sclerosis (MS) spasticity, fibromyalgia trigger points, sprains and strains, and probably your kids' growing pains!

The simplest thing we've found is magnesium. It's required by our bodies, and is usually taken in a ratio with calcium, cal 2:mag 1. But, we tend to eat a lot of milk products, and for this, we need extra magnesium. Plus, for some reason, our muscles tend to run shortages of it. This can lead to spasms, aches and pains.

Oral supplements are great and necessary. I take a Cal/Mag/D3/Zinc capsule with food and a fatty acid capsule so it absorbs better.  I have also just started a magnesium that is slow release, to avoid it causing the runs, in an attempt to better fuel my muscles.

The most miraculous magnesium we've found is not swallowed, but applied to the skin where ever one has a sore muscle. The magnesium moves transdermally, right into the place where you need it right now. Epsom salts are magnesium, so if you can still use a bathtub, take a bath - warm water and a cup of Epsom salts added. Soak and enjoy how good you feel. There's another way to get the magnesium absorbed. You can easily make a liquid called magnesium oil or lotion. It's expensive, but it's very cheap if you make your own. (There is no oil in it; magnesium is slippery when wet.)

Magnesium Oil
1/2 c boiling water
1/2 c Epsom salts (magnesium crystals)
Mix thoroughly until the Mg seems dissolved well.
Allow to cool to room temp.
Apply to muscles.

Some people like to add a teaspoon or two of oil to this to make it less flaky when it dries. It also feels very nice that way. Olive or coconut oil have both been considered. You can also mix it with some lotion in the palm of your hand and then apply it. You don't need much magnesium oil - approximately six drops does an entire leg.

It takes about 20 minutes for the magnesium to make its way through your skin, but after that, you can wash off any residue. I haven't found anything indicating any toxicity level for using it externally, and so believe you can apply it as needed. I use it 4 to 6 times a day for spasms. I use it on my fibromyalgia trigger points. I also use it on my tight neck muscles, and it calms them right down.

Try it and let me know how it works for you!

Translated into Portuguese for our Brasilian friends ~ (not sure if the translation is great but hope it helps.)

Viver para uma Cura
Magnésio Milagroso

Eu gostaria de passar uma das coisas que tem trabalhado para reduzir o quão difícil a vida com doença crônica pode ser. É útil para esclerose múltipla espasticidade, pontos de gatilho fibromialgia, entorses e distensões, e provavelmente seus filhos dores de crescimento!

A coisa mais simples que descobrimos é magnésio. É exigido por nossos corpos, e é geralmente tomada em uma relação com o cálcio, cal 2: mag 1. Mas, nós tendemos a comer um monte de produtos lácteos, e para isso, precisamos de magnésio extra. Além disso, por alguma razão, os nossos músculos tendem a correr a escassez do mesmo. Isso pode levar a espasmos, dores e dores.

Suplementos orais são grandes e necessárias. Eu tomo uma cápsula Cal/Mag/D3/Zinc com alimentos e uma cápsula de ácidos graxos por isso absorve melhor. Eu também só começou de magnésio que é de liberação lenta, para evitá-lo fazendo com que as corridas, em uma tentativa de melhor abastecer os meus músculos.

O magnésio mais milagroso que nós encontramos não é ingerido, mas aplicado à pele, onde sempre tem um músculo dolorido. O magnésio move transdérmica, bem no lugar onde você precisar dele agora. Os sais de Epsom são de magnésio, por isso, se você ainda pode usar uma banheira, tomar um banho - água morna e uma xícara de sais de Epsom acrescentou. Mergulhe e aprecie como se sente bem. Não há outra maneira de obter o magnésio absorvido. Você pode facilmente fazer um óleo de magnésio líquido chamado ou loção. É caro, mas é muito barato se você fizer o seu próprio. (Não há óleo nele, o magnésio é escorregadio quando molhado.)

Óleo de Magnésio
1/2 de água a ferver c
1/2 sais de Epsom c (cristais de magnésio)
Misture bem até que o Mg parece bem dissolvido.
Deixar arrefecer até à temperatura ambiente.
Aplique para os músculos.

Algumas pessoas gostam de adicionar uma colher de chá de óleo ou dois a esta para torná-lo menos esquisito quando seca. Ele também se sente muito agradável assim. Azeite ou óleo de coco, foram ambas consideradas. Você também pode misturá-lo com um pouco de loção na palma da sua mão e depois aplicá-lo. Você não precisa de óleo de magnésio muito - cerca de seis gotas faz uma perna inteira.

Demora cerca de 20 minutos para o magnésio para fazer o seu caminho através de sua pele, mas depois disso, você pode lavar qualquer resíduo. Eu não encontrei nada que indique qualquer nível de toxicidade para usá-lo externamente, e assim acredito que você pode aplicá-lo conforme necessário. I utilizá-lo de 4 a 6 vezes ao dia durante espasmos. Eu usá-lo em meus pontos de gatilho fibromialgia. Eu também usá-lo em meus músculos do pescoço apertado, e acalma-los bem para baixo.

Experimente e deixe-me saber como ele funciona para você!


Thursday, April 12, 2012

Who Will You Be?

MS, lymphedema, and other diseases tie a lot of us down. For me, travel has become something I long to do, but can't. What if you could enter a trance and put your spirit in the body of a plant or animal? What would you choose to be? What freedoms would you claim?

Eyes of the Raptor

In my mind’s eye, I see the tall monolith across the summer meadow.
I run towards it, drawn like iron to a magnet, the dark, red rock.
My feet skim over the meadowland, barely touching;
Wildflowers blur under foot until only their impression remains.

The deep, ember-red rock rushes close to my widening eyes.
Leaping towards the escarpment, I scramble for a handhold, grasping only air.
Exploding through the thinning air, I am atop the towering precipice.

Across the iron plateau, on the verge of nothing, a golden eagle awaits.
Hurled forward in the blink of an eye, I slam into his tufted plumage.
Breathless, I am within.

Launching, we leave the monolithic mesa, shoulders lifting as our wings spread out.
We push against the atmosphere, as solid now as the icy water in the glacial lake below.
Vigilant, we oversee our domain with a sharp bird’s-eye view.

We catch an updraft and spread our iron-sinewed wings;
Hollow bones lifting us, soaring through the heated summer sky.
The sun glints off the deep, blue-black waves below;
A spark that becomes a twinkle in our eyes, a hint of eaglets to come.

Movement at the edge of the dark green forest catches our keen eagle eye.
Focused, we pull our mighty wings tight against our torso.
We dive, silently stalking the marmot in the bear grass below.
Plunging swiftly, we slice through the gusting wind.
Our talons grab the fear-frozen prey. 
Momentum accelerates; our powerful wings driving hard against the whirlwind.

We are the eye of the storm; cyclonic winds whirling off our wingtips.
As we carry the dead weight of the marmot’s limp body,
We scream victorious, the long piercing cry of the sovereign raptor,
Conscious of our dominion over the wild Northern realm.

My mind’s eye closes, and I am lying in the summer meadow.
Wildflowers dance in the hot breeze, casting small shadows on my face.
My heart pounds, I exhale held breath, my lungs expand gulping air.
I open my copper-flecked eyes and wonder –
“Where are my wings?”

© Kit Minden

Sunday, April 8, 2012

Flotsam and Jetsam

It's Easter, and it seems to be a day for posting poems. How is this related to chronic illness? Perhaps in three ways: first, I can no longer imagine going to the beach and waking along the strand - my activities are so truncated by MS that I feel claustrophobic from it; second, we still care about the world even though we are limited in various ways in our interaction; and third, we feel like so much flotsam and jetsam sometimes, the detritus left behind while others zoom ahead, pursuing life at its fullest. Hence, this poem:


I inherited a piece of jetsam from my grandfather Harold C. Palmer, who found it on Cape Cod, near Provincetown, Massachusetts.

Jetsam

He walked along seaweed strewn sand,
   reshaped by winter’s waves and the spume of the cold, salted tide.
Horseshoe crab shells danced abandoned;
   the water rocked a mottled brown carapace, inhabiting it like a ghost.
Among the black mollusks and white clam shells,
   he saw bits of beach glass - green, brown or rare and cherished blue,
   sanded smooth by endless tumbling in the abrasive Atlantic.
He bent to pick up a piece or two, a habit formed in childhood. 
Today, he did not pocket the speckled and muted
   evidence of man’s existence, but cast them back upon the beach.

On this grey and spattered day, he sought other treasure -
   the flotsam and jetsam of a shipwreck.
The S. S. Portland had gone down with all hands;
   distant cousins out of Maine lost to him forever.
There would be no unpacking the last suitcase,
   no delving through wallets for well-creased and folded letters from loved ones,
   no reverent opening of dark red leather-encased photos to view
      hazy images of those who were held dearest by the ones who died.
All that they carried with them in grey pin-striped vest pockets
   or shiny, black, glass-beaded bags
      was captured by the deep,
   locked with their corpses behind a reef so dangerous
      the wreck was never to be dived upon during his lifetime.

The wind whipped through his navy woolen pea coat,
   the spray drenched him, leaving him chilled and sticky with salt.
He turned to make his way back to the lighthouse, leaning into the wind,
   lifting his hand to his brow and looking down, away from the wet gusts;
As often seemed to happen when he had given up hope,
   his eyes lit upon a dark brown corner protruding
      from a mound of pebbles and weeds.
Picking it up, peeling off the slimy tangled kelp,
   he wiped clean the cast iron face of a eight-inch wide plate.
On the curved face of it, in raised letters, was the simple word “AXE.”
It had once been mounted on the wall, perhaps near the engine room,
   and held a sharpened fire axe ready for the possibility of a blaze.

The crew need never fear the boiler again;
   need never worry over the chance they might have to chop away
      burning beams, dumping them overboard,
   while loading panicked passengers into lifeboats,
      just in case the ship was going down.
No flame would ever again burn in the engine room
   or the water-logged timbers of the S.S. Portland. 
He took the axe holder home and, with a shaking hand,
   wrote “S.S. Portland” on a manila tag.
Then, tying it carefully with pale cotton string
   to the mounting hole in the upper right corner,
      he laid the ship to rest.

© Kit Minden