Multiple Sclerosis and Me

Name:
Location: Zanesville, Ohio, United States

Wednesday, September 19, 2007

MS Bike Ride

The National Multiple Sclerosis Society would like to thank the entire Kansas City community for your support of the 24th annual MS Bike Ride on Sept. 8 and 9. This year, we raised more than ever before, and we’re well on our way to our $1.2 million goal.

The challenging route took cycling enthusiasts and MS activists 150 miles through western Missouri — and we couldn’t have done it without your help. The money raised will help thousands of local people with multiple sclerosis through programs and events as well as supporting research for a cure.

Multiple sclerosis interrupts the flow of information from the brain to the body and stops people from moving. If you or someone you know would like more information, please contact us at info@nmsskc.org, call 1-800-344-4867 or go online to www.msmidamerica.org.

Nicole Long
National Multiple Sclerosis Society
Mid-America Chapter
Mission

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Does the RT3 accelerometer spell the end of pen-and-paper questionnaires?

Does the RT3 accelerometer spell the end of pen-and-paper questionnaires?

Newswise — Here is a great thought…the arduous task of filling out boring questionnaires may soon be obsolete! Well, at least for people with multiple sclerosis (MS) whose activity levels must be monitored by doctors. Thanks to the RT3 accelerometer, MS patients can discreetly monitor their activity without the hassle of keeping a journal or completing activity questionnaires. The RT3 is a small triaxial monitor that measures the amount of exercise its wearer performs in a given amount of time. Put simply, the RT3 is a pedometer that measures acceleration along three anatomical axes; not only does it measure the amount of exercise, but it also measures the intensity of movement. The RT3 is touted as being the most accurate of its kind, but, how accurate is it really? Also curious, researchers at the Centre for Physiotherapy Research at the University of Otago in New Zealand conducted a pilot study to investigate the test-retest reliability of the RT3. The study, which used 10 participants with a definite diagnosis of MS and 10 nondisabled adults as the control group, concluded that, despite some possible measurement errors, the RT3 consistently measures walking. Good-bye pens and paper…For more information about this study, read “Reliability of RT3 accelerometer for measuring mobility in people with multiple sclerosis: Pilot study” in this month’s JRRD at http://www.rehab.research.va.gov/jour/07/44/4/pdf/hale.pdf.

Exercise…who really gets it?

You have seen advertisements for exercise machines, countless sneaker sales, and probably have a few gym membership coupons lying around. But, how much exercise are Americans really getting? Only 15 percent of Americans are estimated to achieve the recommended level of physical activity. And according to a University of Pittsburgh study, people with disabilities get even less. The study, in which, 52 manual wheelchair users completed a brief survey and had their activity monitored with a custom data logger for 13 or 20 days, found that subjects traveled significantly farther and faster during the National Veterans Wheelchair Games than on an average day. The research team also discovered that employed wheelchair users exercised more than their unemployed counterparts. However, in the home environment, no matter their job status, wheelchair users were found to have little to no activity. For more information on this study, read “Assessing mobility characteristics and activity levels of manual wheelchair users” in this month’s JRRD at http://www.rehab.research.va.gov/jour/07/44/4/pdf/tolerico.pdf

The subtle dangers of America’s sidewalks

While most ambulatory Americans are not concerned with the impact of various walking surfaces, for wheelchair users, driving over old cobblestone, poorly paved pathways, or rocky roads can be detrimental. Uneven surfaces coupled with extensive use can expose wheelchair users to harmful whole-body vibrations (WBV). While intentional WBV is useful for workout preparation, unintentional WBV can lead to secondary injuries such as low-back and neck pain, muscle aches, and fatigue. In a longitudinal assessment by researchers from the University of Pittsburg, 10 nondisabled subjects drove manual and power wheelchairs over nine sidewalk surfaces during a period of 3 years. The study concluded that WBV are unavoidable because of the nature of the wheelchair. For wheelchairs to effectively negate the effects of transmitted vibrations, the International Standards Organization requires an 8-hour rest period each day. However, because wheelchair users depend on their wheelchairs for all of their mobility, most find meeting that requirement difficult and are therefore exposed to WBV. Researchers also concluded that surfaces other than poured concrete, for example, interlocking concrete pavement and brick, should be considered for pedestrian access routes. Could the smooth, gray concrete that covers most of the nation’s sidewalks be problematic for the thousands of American wheelchair users? For more information, read “Longitudinal assessment of vibrations during manual and power wheelchair driving over select sidewalk surfaces” in this months’ JRRD at http://www.rehab.research.va.gov/jour/07/44/4/pdf/wolf.pdf.


About JRRD

The Journal of Rehabilitation Research and Development (JRRD) is a peer-reviewed, scientifically indexed journal providing comprehensive coverage of all rehabilitation disciplines. JRRD has been a trusted resource for clinicians, people with disabilities, and researchers for more than 40 years. JRRD is available online at http://www.rehab.research.va.gov and in print free of charge.

Thursday, April 05, 2007

I'm working on restructuring the website

STAY TUNED

Thursday, April 13, 2006

How Bad Does It Get?

Elizabeth sent in this question...

I thought about it and realized that while it is a huge question to answer and there are so many directions to go in regards to the answer there are lots of newly diagnosed people who need to know just how bad MS can get.

First, I must acknowledge that MS does not impair every patient equally. MS is a chronic disease that has the following symptoms--changes in sensation, visual problems, muscle weakness, depression, and difficulties with coordination and speech. In the most severe cases, MS impairs mobility and disability.

During exacerbations, you may experience new symptoms or even not experience symptoms that you experienced previously. Many MS patients feel that the symptoms that never go away are the worst. Depression and muscle weakness are chronic issues that are hard to resolve.

I hope this answers your question.

Thursday, January 12, 2006

Heredity Revisited

This was sent to the MultipleSclerosisSupport.com AAQ Feature and thought I would share. Is there anything you would add?

Q: Donna asks: I am one of four children in a family that has two already diagnoised with MS, our Mother was also diagnoised with MS at the age of 38. I am now 56, and have been experiencing many of the symtoms of MS, imbalance, vision blur, unbearable feet pain, and leg pain., as well as problems swallowing. I know that MS cannot be cured, and I really want to just continue to continue, but I"m wondering if because I am in a family with 3 members diagnoised, if I should be examined just so the heriditary aspect of MS could be explored, I am very aware that thus far medical experts have said MS is not heriditary, but because of our familys history I am very concerned this may not be the true situation, also the two that have been diagnoised are my brothers.

A: Yes, you should talk to your doctor. There are multiple reasons. There are treatments available for MS that can help you. If you don't have it, you might have something else that is treatable, as well. While experts don't believe there is a hereditary aspect to MS, they do believe that there is some sort of environmental connection like a virus or bacteria. If this were the case, it is very likely that you all may have experienced the same thing. My own personal belief is that there is a hereditary connection. I believe the conditions that cause MS might not affect everyone equally and that there may be a "genetic predisposition" to contracting MS.

Friday, November 25, 2005

Meniere's Disease w/MS

Some of the symptoms of each are very similar. Alas, they are different diseases.

Check out this article to learn more about Meniere's

Monday, November 21, 2005

Help For Caregivers

Originally published at AAQ on MultipleSclerosisSupport.com

Q: BabyBoy asks: Are there programs or benefits where I can obtain more money to pay someone to watch an MS patient?
A. There is a wonderful webpage designed by the National Multiple Sclerosis Society that has plenty of resources for those attempting to be a caregiver of those with MS. I do not believe that there is a single resource that is going to provide money to help care for your loved one but hopefully you will find some answer on this pagehttp://www.nationalmssociety.org/spotlight-caregivers.asp


Books on Caregiving to loved ones with MS that I recommend

The Comfort of Home: An Illustrated Step-By-Step Guide for Caregivers, 2nd Edition
http://tinyurl.com/afuwe

Mainstay: For the Well Spouse of the Chronically Ill
http://tinyurl.com/boe2z

Multiple Sclerosis: A Guide for Families
http://tinyurl.com/axtge

Wednesday, September 21, 2005

Back To Answering Questions

I'm finally back to answering questions in the AAQ feature of our website. Today, I answered a question about the number of new cases of MS diagnosed yearly. I did some research and found that estimates range from 330,000-400,000 for the number of US cases and around 2.5 million for worldwide cases. 10,000 new cases are diagnosed yearly in the US which led me to conclude there are around 62,500 new cases diagnosed worldwide each year.