Happy Friday! Happy Spring! I hope the calendar means that warm weather and sunshine are on their way.
My most recent addition to Push to Walk’s Website – Family Corner section is on getting help from others after a loved one sustains a spinal cord injury. I know that I felt, as a Mom, that only I could do certain things for my child. And for a time, that was pretty true. Or at least I felt I was the only one who “could or should” do things; who else would do as good as job, etc. But as time passed, I knew accepting help from others would help all of us. Not only for the family relationships as mother/son, but for me and my husband as well, and also for Darren and his sister. Family dynamics (which I’ll discuss in an upcoming section) were greatly affected, and having others help with day to day tasks and/or specific jobs really became a lifesaver.
I found it really important for Darren to take charge of his own care, to articulate his needs and make sure things were done properly. Those lines get blurry when it’s a family relationship, then the relationship becomes strained and affects other feelings. While it is impossible to think everything will go smoothly when talking about daily care and family relationships, at least having a good framework to work within, or goals to reach definitely can help.
Please check out the Family Corner section of our website, and I hope my experience helps someone out there going through similar situations. If you have ways you did things that helped you and your family, please let me know!
Posted in Disabilities, Push to Walk, Spinal Cord Injuries | Tagged disabilities, family, family support, paralysis, PCA, personal care, personal care assistants, push to walk, spinal cord injuries | Leave a Comment »
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!
Posted in Multiple Sclerosis, Push to Walk | Tagged children, children's health, disabilities, MS, MS and Children, Multiple Sclerosis, Multiple Sclerosis and Children, neurology, paralysis, push to walk, WebMD | Leave a Comment »
My latest edition to the Family Corner section of Push to Walk’s website describes how I felt about establishing a schedule and routine for Darren, me and our family when we arrived home from Shepherd Center.
My intent was to establish a schedule of sorts as soon as possible, which was not necessarily a project that progressed evenly or predictably. Unplanned events happened, Darren would get sick, I don’t even remember all that was going on right when we got home. But I was pretty insistent on at least trying to maintain a regular routine, partly for my own sanity if nothing else.
I hope this information on our website helps some of you in similar situations, or helps reaffirm the fact you are not alone in going through this difficult transition. If there is anyone reading this blog post or website section, and you would like to discuss anything related to SCI, please feel free to comment here or get in touch with me. I am always available, and would be happy to help.
Posted in Push to Walk, Spinal Cord Injuries | Tagged disabilities, family support, push to walk, spinal cord injuries, www.pushtowalknj.org | Leave a Comment »
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!
Posted in Multiple Sclerosis, Push to Walk | Tagged Barnabas Health, Barnabas Health's Multiple Sclerosis Comprehensive Care Center, disabilities, MS, MS and Diet, MS and Nutrition, Multiple Sclerosis, paralysis, push to walk | Leave a Comment »
I’d like to give a shout-out to my friends at Pushing Boundaries in Redmond, WA. They are celebrating their ninth anniversary! I love their tagline: “Exercise, health and hope for people with paralysis.” It really sums up what they do, and they do it well!
Pushing Boundaries’ founders, Allan and Sharon Northrup, created a wonderful organization that has benefited so many people in the Northwest, and they continue to grow and expand. Their Executive Director, Tricia Lazzar, has been a tremendous help to me and to Push to Walk over the years, providing guidance and advice, and sharing information.
I know Pushing Boundaries is going to be a major sponsor at this year’s Working 2 Walk conference to be held October 17-18 in Seattle, and they are involved in the entire SCI and paralysis community for the good of so many.
Congratulations to Pushing Boundaries for doing what you do, and doing it well. We wish you many more years of success for you and your clients!
Posted in Disabilities, Push to Walk, Spinal Cord Injuries | Tagged Allan Northrup, disabilities, exercise, paralysis, push to walk, Pushing Boundaries, Sharon Northrup, spinal cord injuries, strength training, Tricia Lazzar, walking, workouts | Leave a Comment »