"My Story"

Thriving with MS.
By Rora Melendy, dear friend of Girl with MS.
Multiple Sclerosis. “MS.” It’s one of those diseases that we don’t know much about but think we’ve heard about it through telethons or something (not quite, it’s MD – Muscular Dystrophy – that benefits from the annual celebrity Labor Day telethon). MS is one of those diseases that people don’t learn about until it touches them or a loved one and they are thrust into learning.

January 2001: Life for many people in the U.S. is good. The economy is still robust after nine years of economic expansion following the recession of 1990-1991. In Eugene, Oregon, Caroline Craven is enjoying life as a marketing executive, spending her free time working on a horse and cattle ranch and going on outdoor adventures up and down the western coastal states in the U.S. As she says, “Adventure was my game. I wasn’t an extremist, but I was known to play hard: whitewater kayaking, mountain biking, rock climbing, anything and everything in the snow. Name it; I tried it. My previous life was filled with river guiding and horse training.”

Then it all changed. “[Several] years ago I was diagnosed with MS, which affects the same part of your brain as alcohol, creating difficulties with such simple and necessary motor functions as walking, seeing clearly and using my hands without tremors (shaking). Symptoms for MS are similar in some people and different in others. Among the many annoyances in my personal battle with MS is that I became very heat sensitive — I have a broken radiator. Hot weather activities ended. Simply put, I would melt. Lay me down in a cold body of water."

MS is an unpredictable disease within the central nervous system (CNS). The nerves that run throughout the body are insulated by a sheath of myelin, similar to the insulation that surrounds the wires in a cell phone charger. In the case of the charger overuse, getting caught in doors, under chair wheels, or bent/wrapped too tightly can result in the sheath breaking down and exposing the copper wires inside, which makes using it unsafe and causes it to work unpredictably or not at all. Similarly, in MS the myelin sheath is damaged or destroyed, which disrupts the communication between the brain and rest of the body. Anything associated with a nerve can be affected by MS - vision, pain, urinary tract, numbness, tingling, and so on. Scientists believe it is an immune system disorder, but research so far is not definitive.
Many celebrities have spoken publicly about their diagnosis and the challenges they face. Jack Osborne, son of famous rocker Ozzy, was diagnosed in 2012. Reality TV star Michaele Salahi allegedly gate crashed a White House party a couple years ago despite being diagnosed in the 1990s. Ann Romney, mother of five and wife of a presidential candidate, received her diagnosis in 1998 and still raised her boys. Daytime talk show host Montel Williams is outspoken about his symptoms and works to raise awareness and research funds through his Montel Williams MS Foundation. Others afflicted with MS include comedian Richard Pryor and actress Teri Garr. Former Mousketeer Annette Funicello recently passed away after suffering for more than 20 years. According to the Huffington Post, she spent her final few years in an MS coma, unable to walk or talk. Richard Cohen, an Emmy-winning TV producer and journalist, who currently has trouble standing, kept his diagnosis a secret despite his symptoms’ sudden onset so the MS wouldn’t define him until he realized the symptoms made it appear he was under the influence of drugs or alcohol, according to USA Today. Richard Cohen, an Emmy-winning TV producer and journalist, who currently has trouble standing, kept his diagnosis a secret so it wouldn’t define him until he realized the symptoms made it appear he was under the influence of drugs or alcohol, according to USA Today.
Caroline can relate. She is not defined by MS and is doing more than just surviving with it. She’s thriving. So much so that it is the title for her online blog: GirlwithMS.com: Thriving with Multiple Sclerosis. Her initial symptoms also struck suddenly with full force during a trip across Guatemala with friends. Caroline lost her vision and balance. “It was as though I was living life with three martinis for breakfast, lunch, and dinner.” Listening to her tell it, it’s amazing she got home to the states. “I flew back to California alone, stumbling through airports along the walls with broken Spanglish. I had no idea what was going on, or what lay ahead of me.” It has been a process, but the adjustments that was ahead of her in 2001 is now part of her life.
Everything that was true and reliable before 2001 changed. The ground shifted. Now, the new normal for the economy has nearly everyone being more thoughtful about using credit, making discretionary purchases, and leaving one job without having the next one set. The things that used to be automatic and taken for granted now require careful consideration in the wider culture and in Caroline’s day-to-day life. Transitioning from a six-figure income to a four-figure one, being unable to enjoy outdoors or time with friends in weather above 80°, thinking carefully whether each food item consumed will be beneficial or detrimental to thriving. Those considerations are all the new normal for Caroline.
MS is truly a non-discriminatory disease, affecting people of various races and ages, although it is slightly more prevalent in women. According to the National Institutes for Health, most people first experience symptoms of MS between the ages of 20 and 40 and they’re frequently vision related. Often individuals with MS experience muscle weakness in their arms and legs and difficulty with coordination and balance. These symptoms may be severe enough to impair walking or even standing. In the worst cases, MS can produce partial or complete paralysis. Most people with MS also exhibit paresthesias: transient sensations such as numbness, prickling, or "pins and needles" feelings nearly anywhere in their body. Some may also experience pain, speech impediments, tremors, and dizziness, all of which are frequent complaints. Occasionally, people with MS have hearing loss; many struggle with depression as well, and approximately half of all people with MS experience cognitive impairments such as difficulties with concentration, attention, memory, and poor judgment, but these symptoms are usually mild and are frequently not connected to the MS, though recent evidenced-based studies are showing a strong connection.
Most of MS’s symptoms benefit from horse-based therapies similar to other disorders and diseases such as cerebral palsy, traumatic brain injury, and autism spectrum disorders. Equine therapy, or more properly hippotherapy from the Greek word “hippos” meaning horse, uses the multidimensional movement of a horse, which is variable, rhythmic, and repetitive, in a variety of ways beneficial to people with MS. According to the American Hippotherapy Association, horses “provide a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and motor planning” all of which are challenged by the CNS damage inflicted by MS.
For Caroline, horseback riding is second nature. She began riding at the local stables as a young girl, continuing to compete and provide horse training into her twenties. In her thirties she devoted a large part of her free time to ranch work on horseback, “There’s nothing like the rush and challenge of rounding up 400 head of cattle’”. For a while after her diagnosis however, this renaissance alpha-executive was unable to drive, walk, or see. Now that she is able to ride again, she finds that being on horseback is very healing for her body and her psyche. While circumstances don’t allow her to maintain her own horses, she has plenty of friends with horses that she can ride when she is able. Living in an area with many large native oak trees, valleys and ridges allows her to ride in the middle of the day when the weather is mild and in the mornings and evenings when it’s warmer. There are also several pieces of adaptive clothing and gear that assist her in maintaining a proper core temperature.
Currently, there is no cure for MS. Symptoms can vary widely from person to person and day to day as some people will have difficulty talking or walking from the time of their diagnosis while others will suffer times of intense flare-ups mixed with periods of nearly imperceptible symptoms. In May of 2012, Caroline was very symptomatic and bedridden with a flare-up attributed to a relapse from overdoing things and not listening to her body. Now her routine relies on healthy living choices including yoga, moderation in nearly everything, and green nutrition, which includes juicing and focusing on healing as well as cooling foods. Just a few days ago, she rode a friend’s horse for three hours in the hills and “felt awesome afterwards”, sounding energized at the end of the day instead of completely wiped out. Caroline thrives on her path towards the best health possible by continually choosing "life style changes”. “My mantra includes ‘reduce stress, watch diet, learn to chill out and smell the roses,’” she says with an audible smile.
This year she is planning to embark on a yearlong road trip to promote MS awareness with her friend Kathy and two horses. (Trip delayed and being redesigned) They will be touring the country, trying to visit all forty-eight contiguous states during the most MS friendly temperatures for each region. This past year taught her about focusing on weather issues, clothing, gear, and other MS essentials to minimize the drain heat can put on her body. She knows she needs to plan carefully for rides and outings with cooling foods, cooling vests to keep her core cool, plenty of water. She also knows to pay attention to when she should let the horses relax in the shade of their trailer or in a corral while she goes fly casting in a nearby stream or does some of her amazing wildlife photography. Caroline is helping folks learn how to say "TakeThatMS" (her Twitter hashtag). She’s looking forward to hearing people say, "I was diagnosed with MS but I know I will be OK because of all the great resources out there and the examples of other people thriving with MS!" To follow Caroline’s cross-country adventure, and the adventure of getting prepared, look up her blog: MSonTheRoad.com or follow her on Twitter @TheGirlWithMS or search her hashtag #TakeThatMS.


Carole Mayne said...

Hi Caroline,
Thank you for sharing your journey. My daughter 35, just was diagnosed with RRMS. She will start an infusion of Tysabri next week. We are pretty much health nuts, and are studying everything possible.. do you or did you ever take any medications? Thanks,

Caroline Craven said...

I use cannabis, diet, nutrition and lifestyle to manage and treat my MS. Was on DMT and many other "medicines" prescribed by the doctor. None really worked for me. But everyone is different. The trick is to learn how to manage your whole health: body, mind and soul. We call this "Self-Care". There's a growing movement toward self-care, called the #selfcareMVMT.

Anyway, my apologies for my late response but am sending prayers and hope all is well! Please feel free to reach out to me when and if you want to chat.


Unknown said...

I would love to talk with you about alternatives. I am 2 weeks into weaning Myself off of opiods for pain from My MS.

Unknown said...

Hello Caroline, I have a lot of MS pain and spasiciti, I'm in a state that recognizes medicinal marijuana what precisely is your particular receipe/dosage you have found to work for you?