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Archive for the ‘Multiple Sclerosis’ Category

Hello everyone,

Having more clients at Push to Walk with MS recently has led me to have conversations with a variety of people about this disease and condition. One of my friends is a nurse in a pediatrician’s office and she is seeing MS diagnosed more frequently in children now more than ever before. Is this because MS has become a catch-all diagnosis of sorts when no other explanation can be found? Is research showing groups of children exhibiting various symptoms that are similar to adult diagnoses of MS? Are there new causes of MS in children? I decided to search a little on the internet, and found some very interesting information.

According to WebMD, I found that while “multiple sclerosis (MS) occurs most commonly in adults, it is increasingly being diagnosed in children and teenagers. Of the 400,000 diagnosed cases of MS in the U.S., 8,000 to 10,000 are in children up to 18 years old. Neurologists think there are probably many more children with MS that have not been diagnosed.” I found this intriguing and wanted to know more. The article continued on to say “multiple sclerosis may manifest itself differently in children and adults. In children, it may begin after a period of neurological symptoms called acute disseminated encephalomyelitis (ADEM). For most children, the symptoms of ADEM — including headache, delirium, lethargy, coma, seizures, stiff neck and fever — are temporary. But other children continue to have symptoms or experience additional symptoms that meet the criteria of MS. MS is thought to progress more slowly in children than in adults; however, significant disability can occur at an earlier age in people whose MS begins in childhood or adolescence. The cognitive and psychological consequences of MS are likely greater in children and adolescents and may affect academic performance, self-image, and relationships with peers.”

I will continue to do more research in this area, and see if our program at Push to Walk would be helpful to children diagnosed with MS. If you have experience or knowledge of this topic to share with me and my readers, I’ll hope you’ll share it with us!

Cynthia

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I’ve been thinking about a friend of mine who has MS and follows a very strict diet that has improved how she feels on a daily basis. It’s primarily a gluten free diet, but I’m not sure what else she might do, like taking vitamins, supplements, etc. Maybe she’ll respond to this post and provide more information!

So thinking about the whole connection between MS and nutrition, I did a little research and came across this site: http://www.nhfw.info/multiple-sclerosis.html. The author writes below:

“I have a disorder called Ehlers-Danlos syndrome, which is supposedly an incurable hereditary connective tissue disorder (HCTD). Yet, in doing research on EDS, I found lots of diet and supplement tips that helped my condition by collecting nutrition books and reviewing studies in Medline, the medical research database at the National Institute of Health’s website.  An acquaintance of mine has multiple sclerosis, and in comparing symptoms there seemed to be some overlap between MS and EDS.  In order to help my friend, I did the same research for MS that I did for myself and EDS. Her MS symptoms improved through changing her nutritional habits, which is why I decided to put up this web site.”

A few of the nutrients she writes about are Magnesium, Gluten, Uric Acid, Estrogen, Vitamin D and Vitamin B12. It seems to me that there are not a lot of studies providing concrete evidence of how to manage one’s diet after being diagnosed with MS, but by talking with your Doctor and perhaps consulting a nutritionist, diet changes could make a positive impact on your day to day quality of life. In northern New Jersey, one of the most respected medical centers, Barnabas Health, provides a comprehensive MS program that includes a wellness and exercise program as well as general info on MS.

I hope this information and links provide useful information. If you’ve found something that works for you, please post and share it with us. Thanks for reading!

Cynthia

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As Push to Walk’s clients now include a growing number of people with Multiple Sclerosis (MS), I wanted to do my part to spread awareness and information about this often misunderstood and misdiagnosed autoimmune disease. With permission from my friend, Cathy Chester, I am re-posting her recent blog entry about living with Multiple Sclerosis (MS).

Cathy’s Blog:

I was thrilled to see that my post, “5 Things I Want You To Know About Multiple Sclerosis And Me” reached 1K “likes” on The Huffington Post. I hope it will help to spread awareness about MS and make our world a better one until they find a cure.#ms #multiplesclerosis #disabilityadvocate

5 Things I Want You to Know About Multiple Sclerosis And Me

The month of March is Multiple Sclerosis Awareness Month, an effort to help expand knowledge, support and understanding about the disease. I wrote this short piece to educate others about what it feels like to live with MS and a disability. It is my hope that you’ll join me in spreading awareness about MS by helping to educate others.

Don’t feel sorry for me, but do me a favor by learning more about MS. Then the next time I tell you I’m tired or I seem to often cancel plans, you’ll have a better understanding why.

I don’t look like there’s anything wrong with me, but my immune system tells a different story. So the next time I feel the need to occupy a handicapped parking spot, first ask whether my placard is registered before you begin shouting obscenities at me. I appreciate your concern, but I think you should treat a disabled person with the respect they deserve.

Practice compassion and tolerance whenever you see someone with a disability. Their road is a daily battle of maneuvering the challenges of life. The things able-bodied people take for granted, such as walking, talking, dressing, exercising, seeing, peeing, pooping and intimacy is considerably more difficult for people with disabilities.

Help us keep our self-esteem intact. Imagine falling down in front of a crowd and people begin to whisper that you look drunk. Or you find yourself attending an event with some friends and are unable to keep up with their fast pace. We don’t enjoy burdening others with our issues. Yet, in our silence, we’d be comforted in knowing that not only do you understand why our bodies are disobeying us, but that you’ll also be willing to slow your pace down to help us feel better about ourselves.

Be patient. We are fearful of the next exacerbation (flare-up) that may wreak havoc on our bodies. So if you’re trying to make plans with us, and we seem to ask a lot of questions (how long will the event be, where is the nearest parking lot, is the venue accessible) please be mindful there’s a reason why we’re asking so many questions. It’s not that we don’t want to see you; it’s simply that we need to take care of our MS.

For more information about Multiple Sclerosis, please visit The National Multiple Sclerosis Society website.

Follow Cathy Chester on Twitter: www.twitter.com/@CathyChes

Look for new blog posts from me each Wednesday related to various MS topics. If you have any suggestions for information and resources, or would like to write a “guest” blog post for me related to MS, please let me know. Thanks for reading, Cynthia

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