May, March: all months that start with "M" are for "MS Awareness"

Howdy,

As far as months of the year go, March is well noted for her temperament: "In like a lamb, out like a lion". "Beware the Ides of March", etc., and so it is fittingly known as MS Awareness month (ed. note - May is officially MS Awareness Month. Mom might be a little confused on this one). Multiple Sclerosis is a central nervous system disease that may enter the picture like a lamb, laying silent and dormant for years-even decades, but MS may very well exit like a lion after doing significant and permanent damage.

Think of MS as the electrical wiring running throughout one's home. It's what supplies power to everything in a home that requires power to operate properly. When all the circuitry is wired correctly and maintained in good working order, all the electric gizmos and gadgets work as they should.

In a person who develops MS, something goes haywire with the immune system and T helper cells, designed to clean the myelin sheath that protects the nerves, fall under attack from other T helper cells that have been taken over by some renegade strand of RNA and modified in such a way that they damage that which they would normally only maintain.

Damaged areas of the central nervous system begin to short circuit and over time the message delivery may cease entirely, hence rendering useless whichever part of a person's body those nerves control or maintain. Similarly, if you have a rat in your attic gnawing away at an electrical wire eventually the circuit is broken,  the rat probably gets fried, and the light will stop working.

The difference is that a rat in the attic may be identified and removed but not so the brain or spinal cord of a person with MS. The immune system does not differentiate the "good" cells from the "bad" ones, since the invasion occurs without incident that might alert the immune system to foreign invaders. When medical science can answer the why-how questions about that aspect of the disease there may result some way to help cells distinguish and isolate one cell from another; possibly a cure will be found.

In the meantime, pharmaceuticals designed to inhibit or obstruct the "bad" cells may be useful in influencing the rate and extent of damage done over the course of the disease. That, at least may be true for those whose MS falls into the more widespread Relapsing-Remitting category. Not many drugs thus far are known to effectively outwit the disease process in those whose MS is progressive. On the one hand Progressive MS may proceed at a slower pace than the RR form, but on the other hand there is no relief or recovery from the ongoing attack.

During the last few decades, Medical science has done amazing research into developing the drugs that help some victims fight the disease and there are drugs that help others cope with the myriad symptoms MS displays, but until the disease is nailed down and understood, there may be no cure.

Not to get all whiny baby, but please don't let the outward appearance of a friend who may have been newly diagnosed with MS fool you, it typically is a debilitating disease and the early symptoms usually are deceptively mild. It is one thing to be diagnosed with one of those diseases that strikes someone tragically but relatively quickly, it is quite another to weather a degenerative disease for many years, virtually a lifetime.

Please help spread the word throughout the month of March and if you have a chance to participate in an MS Walk or other fund or awareness raising event, please do so.

So long for now,

Barbara/Mom

New Research (and a Full House)

It's been a while since my last blog. Things have been hopping here at the old Hudson House and I mean hopping!  

We have a new house guest and are learning how to adjust to the 24/7 care needed for Sonny's dad, who has Alzheimer's Disease. It doesn't leave us much time for other things, but I wanted to report on new research into MS and put a link or two on here for people interested in reading about new developments.  

The following link addresses research into possible stem cell treatments for those afflicted with Secondary Progressive MS. This is an area that hasn't traditionally received as much attention, with the majority of MS cases falling into the Relapsing-Remitting category. It's nice to see that scientists are working toward helping find better treatments for those in the lesser known groups: http://www.medinewsdigest.com/?p=3861

On another front, the Myelin Repair Foundation just released a report that they've teamed up with ENDECE to take the next step in working toward clinical trial for myelin repair. Here is their link: http://www.myelinrepair.org/documents/2012-02-07-ENDECE_Neural_MRF.pdf

 

Either the stem cell replacement or the myelin repair seem to me to be a very logical route in new treatments for MSers. These two paths might actually counteract the disease process and may help neutralize its destructiveness.

The SOKO Kids and their friends have done a wonderful job of promoting awareness and raising funds for the KMSS over the course of their stay in Korea.  Shawn and Maury will be moving on back to the USA in late April where they and some hiker friends will be going on a PCT hike and kicking off yet another fundraiser to help raise money and awareness for MS right here at home--well not quite at home but clear over the other side of the North American continent!

 

Please stay tuned to Making Miles for updates about MS R&D and news, blogs, and photos about the forthcoming Pacific Crest Trail Adventure! It promises to be an actual and armchair experience to remember. The goal is to raise money for the Myelin Repair Foundation and bring greater awareness about Multiple Sclerosis.

So long for now,

Barbara/Mom

Updates from the Western Front

A huge thank you to Shawn and Maury with Making Miles, to Joe Riley (aka 4IN4 Superman) and the Daejeon Diablos running club, to everyone who participated in and sponsored last year’s activities and to those who shared Movember with MS and grew some hilarious 'staches. Your efforts help to raise awareness and funds for KMSS so that they can provide services and information to people who suffer daily with this disease. 

MS remains, for now, a mysterious and largely invisible disease. Many of its victims look normal on the surface and may remain so for indefinite periods of time. If the disease progresses, as it usually does, the damage (either from the disease itself or from years of taking this drug and that to try to address symptoms) becomes more apparent as the disease becomes more difficult to combat effectively.

While many new treatments and drugs have been developed and deemed safe for trials and subsequent usage, those drugs carry exorbitant price tags because of the high cost of research and development. Due to the crazy nature of MS not everything works well for everybody, so finding a silver bullet is most likely not going to happen. 

Below are some links to research and development of drug treatments that are used to combat MS. The drugs are not cures and they can pose serious side effects to patients.  The drugs work in various ways to slow the progression of the disease by reducing inflammation and/or inhibiting cells that launch attacks on the central nervous system. 

• http://www.mayoclinic.com/health/multiple-sclerosis/DS00188/DSECTION=treatments-and-drugs
• http://www.mult-sclerosis.org/mstreatments.html
• http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
• http://online.wsj.com/article/SB10001424052748704363504575003442473185972.html
• http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/fingolimod/index.aspx
• http://www.drugs.com/news/new-oral-hailed-treating-multiple-sclerosis-29229.html
• http://www.drugs.com/ampyra.html
• http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/natalizumab/index.aspx
• http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2479

Aside from research with rodents, there have been no drug trials directed at repairing myelin.  There has been a limited human stem cell trial (Northwestern University). More research needs to be done with stem cells, for they may provide an avenue toward a cure or better management of the disease.

Efforts continue with mapping genes and while there has been some progress in finding links to MS among the genes, the process is a lengthy one. Because MS attacks its victims at different rates and in many different ways, gene mapping is like searching for needles in haystacks. Eventually it should provide valuable clues to unraveling the mystery of this disease.

I recently took part in a drug trial to compare the effectiveness of Gilenya with the CRAB injection therapies. Unfortunately, I had to drop from the trial, after taking the drug a little over three weeks, when my vision began to deteriorate. I then resumed using Avonex--weekly dose of interferon-beta 1a-- and took a month's course of Prednisone (corticosteroids) to reduce the inflammation of the optic nerve and hopefully reverse the damage. While symptoms such as the tingly-numbness, that covers much of my body, appeared to respond well as a result of taking Gilenya, I had more difficulty walking and standing. The two areas that I hoped might improve as a result of Gilenya worsened and I'm not sure if that had to do with the medicine or if I coincidentally suffered another relapse. 

I and 2.5 million other people hope for a cure. Thanks again for supporting this cause.

The Dog Days of Summer

Hi there,

It's been a while since my last blog, but I haven't been sitting around twiddling thumbs. I've been relatively active in more ways than one. This summer brought with it a new relapse (exacerbation, flare-up, attack--all names for the periods of active demyleination during relapsing-remitting MS attacks).

Although I did not have another MRI done to identify active lesions, I could tell that this new relapse was pretty much in the same part of my brain as last summer's big one. Fortunately, this new relapse was not further complicated by a chronic bladder infection as was last year's attack. [Researchers learned in recent history that MS may attack the gray matter and may result in cognitive deficits. Former medical opinion limited attacks to white matter. Those of us who suffer from black holes in our brains could have confirmed that long ago.]

My dear nurse friend, Candy, finally convinced me that I needed to tell the urologist that it was time to pull out the big guns (Bactrim) and set them onto whichever bacteria was causing the latest bladder infection. For most of my adult life, I was under the impression that I was allergic to sulfa drugs and therefore could not take Bactrim. 

After trying this antibiotic and that one, for months, and learning that I now had "bumps" in my bladder--making it difficult to fight infection, I finally let Dr. Kidd know that I thought it would be worth the risk to at least try Bactrim, for my staunch ally in the war against MS suggested that "just because you may have had a topical reaction to a salve (in the sulfa family) does not mean that you would have a systemic reaction to an antibiotic containing sulfa."

Wallah, that stuff worked miracles and I still take half a pill now and then when I get warning signs that some new critter wants to take up residence in my sinking ship bladder. Bactrim contains two classes of antibiotics and works on both gram negative and gram positive bacteria.

Bless you, Candy, you may have saved my life. And bless all my MSer friends, for they offer invaluable advice and comfort during rough times.  Life is not all gray, however, as this year I took a plane ride to Houston, Texas to see my elder brother married to a very nice woman, who happened to be a teacher and capable of editing Harley's latest literary achievement.

Within months I was packing for another very auspicious occassion, also known as a "hiker-trash" wedding in the gorgeous Appalachian Mountains. My one and only bambino found the love of his life while hiking the Appalachian Trail in 2008, and they just tied their knot in a somewhat unorthodox manner - barefoot, sporting the latest in backpacks, staking their territory with classy hiking poles, and grinning from ear to ear with glee on August 27, 2011.  Finally, I have a daughter-in-law and she is a treasure. Thank you, Shawn and Maury.

I also spent much of the year, that wasn't used for travel plans and trips (my first trip out of Tangipahoa Parish since 1999), painting and crafting. I haven't sold anything on Etsy yet, but I like looking at all the great things all sorts of people make and sell there.

MS doesn't rule my life, although it can definitely make things difficult and trying at times. As I've noted previously, I believe I first saw a sign in my early twenties and by my late thirties, there was no question something major was amiss. I have always been determined to fight life the devil and outlast this little devil. 

Managing symptoms has become easier through the use of steroids as needed, and disease modifying drugs--all of which have side effects, but many people believe it is worth a certain amount of sacrifice to improve quality of life. The alternative is not an option for me and I refuse to give in to utter isolation and despair. 

I'm attaching some websites along with excerpts from Wikipedia and Medical sites - interesting and useful information from earlier times to present day trials.

• The Historical Beginnings of What We Now Know as "MS"
• The Discovery of MS
• Diagnosis
• Potential Future Treatments

Ciao and ... Go for it, Joe Riley! 

I Get By With a Little Help From My Friends ...

Not long ago, I finished a little painting for a friend I met on the National Multiple Sclerosis Society's web page. The painting is symbolic of the battle and the bond we share. The orange pot and the ribbon signify a color and symbol associated with MS and commitment to persevere. The purple calla lilies are symbolic too, I think, but I suspect that is personal.

Last Winter, around the time all the hoopla with my MonSter flared up again, this young woman was the first person to welcome me to the site. I went in search of answers, clues if you will, that would help me fight what was going on inside my brain. Instead, each and every morning for many months we got together with others for a cuppa' joe and a little gossip.

Or sometimes, we'd meet up at an after-hours Tequila party with Mr. Scotty and the donkey on Claudia's farm. On one occasion some friends and I had an uproariously good time frolicking down I-55 (one of many sleepless nights) while riding aboard a hospital bed, complete with IVs and catheter lines, wearing red sequined apparel and throwing kisses to passersby. If that wasn't a sight for sore eyes. It was jolly good fun and as good of medicine as any produced by a drug manufacturer, at least that I've encountered.

On a more serious note, at the national website, we, and others with our disease, spoke often regarding the plights of people, online friends who share the common bond of multiple sclerosis. We encouraged and consoled, we laughed together and, at difficult times, we cried together.  We compared and exchanged notes and research links and we always expressed the hope for a brighter tomorrow, for clues to this mysterious disease, for a key to unlock a door that will hold a cure.

As my little family of online friends grows, I am getting to know many of them fairly well. I know that many are taking similar drug therapies to the one I have been fortunate enough to receive. At a cost of over $3200.00 a month, Avonex is well beyond my teacher's pension, so I am very lucky to have had health insurance.

While many have found help through the manufacturers of the major MS drugs (C.R.A.B. aka Copaxone, Rebif, Avonex and Betaseron) others are not as fortunate and are still trying desperately to find assistance in affording medicine they so desperately need to treat symptoms or to slow its progression. 

Among my online MS friends is a biomedical researcher, who also happens to have this disease. He has been working on myelin repair and is getting ready to commence a trial, I believe. This research should result in a way to repair places along the nerves where the myelin has been eaten away by the renegade T-helper cells that disguise themselves as legitimate helper cells.

We are encouraged about this line of research because it makes sense to replace, so to speak, what those oligodendryte (sp) cells remove each time they launch an attack. This could prevent the formation of plaques and prevent sustained damage over the longer term.

There are so many theories about MS, whether all the forms are even one disease or many related diseases. I'll try to present those next blog. 

Lastly, I just want to say "thank you" to all the EPIK, University and hagwon (private school) teachers in South Korea, their sponsors and friends for supporting the KMSS as the fight to find a cure continues until the goal is reached.