Multiple Sclerosis and Me

MS Bike Ride

2007-09-19T14:59:00.000-07:00

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

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

2007-09-19T14:56:00.000-07:00

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.

I'm working on restructuring the website

2007-04-05T14:14:00.000-07:00

STAY TUNED

How Bad Does It Get?

2006-04-13T08:08:00.000-07:00

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.

Heredity Revisited

2006-01-12T07:10:00.000-08:00

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.

Meniere's Disease w/MS

2005-11-25T19:01:00.000-08:00

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

Check out this article to learn more about Meniere's

Help For Caregivers

2005-11-21T07:02:00.000-08:00

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

Back To Answering Questions

2005-09-21T08:41:00.000-07:00

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.

Starting Rebif

2005-07-28T13:38:00.000-07:00

I found this blog entry just today from June 10th from Tammy. It got misplaced.

Starting Rebif
I have received 3 movies from Dr. Chodisetty to watch at home and study the information on each and decide which medication I would like to start on next. One was Avonex, one Rebif and the third I don't remember what it was. The Rebif was by far the best choice. You do have to take the medication just under the skin 3 times a week each week and it is usually Monday, Wednesday and Friday. You can pick whatever days you want, however they want you to have a day in between the shots.
I go back to the Dr.'s office next Tuesday and he will get me setup for someone to comeover and teach my husband and a back person to give the shots since I just cannot give them to my self.

My relapses have been very frequent and long this year. I was pregnant in October of 2004 and lost the baby in Dec. 26, 2004 which caused a whole train of problems including depression, excerbations, vomiting for 4 months, hospitalization etc. Very scary for my family and myself. My husband and I have 5 children at home all who are special needs and adopted. They did not do very well with mom sick and away from home during this time. Typically if mom is sick everyone just pitches in and helps. The two 7 yr olds sort laundry, the 17 yr old puts it in the washer and dryer and they all fold and put away. The 20 yr old and the 9 yr old help with dinner and vacuuming. It all runs like clock work. Everyone has a job and they each know what it is. If they have any questions they just come to the bedroom and make sure I am not asleep or getting sick and ask.

So for Carol and all of you others that have this dreadful disease I too can console with you on how it disrups your busy life and changes the plans you had made, but you must keep in mind that God is reminding you that he is in charge and control of our lives not us. When we learn to release everything over to him all the pieces will fall into place as it should.

Optic Neuritis and MS Part 2

2005-07-28T13:34:00.000-07:00

I feel overwhelmed. I've got 22 AAQ to answer at our site. Please be patient. I updated our Optic Neuritis page in response to my latest question to answer.

You can see it here

But You Look So Well

2005-07-07T16:41:00.000-07:00

Has anybody seen the documentary on PBS called, "But You Look So Well..."? It was written and produced by a couple in Brighton, MI. Kevin Lindenmuth has contacted me about reviewing his sequel to the original that has just been finished. He is going to send me a review copy for me to review for the site. I think that is very exciting. Kevin tells me he was diagnosed with MS eight years ago. So, he knows and understands the disease. I'll let you know when I receive it.

Optic Neuritis and MS

2005-07-07T09:02:00.000-07:00

Optic Neuritis often manifests itself as the first signs of MS. It is essentially the inflammation of the Optic Nerve. Usually, it is not a long term problem but can reoccur just as MS does. We created a page on Optic Neuritis to help you determine what effect it might play with you and MS.

Can I Get Pregnant?

2005-06-16T20:00:00.000-07:00

There is no reason that MS needs to prevent you from getting pregnant.

Here is the info you need to know

Diagnosis of MS with a negative MRI

2005-06-16T12:58:00.000-07:00

It is possible to have MS and have a "normal" MRI without the lesions often present in MS. The lesions may be instead reside in the spinal column area or not be present at all. You can find out more here.

Website Translation

2005-06-15T16:25:00.000-07:00

Do you ever need to translate a website from or to your native tongue? We found a free service to do just that. It is located here.

Crestor helps with Cholesterol and MS?

2005-06-14T14:18:00.000-07:00

I found some research indicating that Crestor (and other statin drugs) may be the next type of drugs used to slow the progression of MS. Have you tried it for cholestewrol and received an added benefit? What little I know is located here.

Is Novantrone too dangerous?

2005-06-07T11:47:00.000-07:00

Recent developments indicate that Novantrone might cause Congestive Heart Failure or increase your chances of developing it, if you take Novantrone.

Smoking Linked to MS?

2005-06-06T08:44:00.000-07:00

A question on the AAQ page on our main site led me to research the possible connections to tobacco and MS. You can read more about what I found at www.multiplesclerosissupport.com/possiblecauses/cigarettes/
But, I'd like to ask all of you to respond with the answer to this question. Have you or do you currently smoke?

Should You Tell Your Employer?

2005-05-28T08:01:00.000-07:00

The answer is not clearly defined. You are not required to tell. But, telling could make your life easier or more difficult. What should you do?

What Role Does Heredity Play in MS

2005-05-17T06:21:00.000-07:00

What we have discovered through research on the internet
Heredity

Are you receiving disability payments for MS?

2005-05-16T19:51:00.000-07:00

My research indicates there is a 5 part test to getting your disability payments for MS from the SSA. The wait can be as little as 5 months or over a year with appeals. Some use a claim management company to process their claims.

What do you need to know? I started a page called MS and Disability

The Mental Aspect of MS

2005-05-15T19:05:00.000-07:00

There is such a mental aspect to MS that the medical community often ignores. Often, it is the problem that is the hardest to cope with. There are books out there that can help in this arena.

This search is called Living with MS.

Water Therapy

2005-05-15T12:12:00.000-07:00

Water Therapy is an effective way to maintain and improve your strength in your legs and back. We have started a page dedicated to Water Therapy

Welcome to Multiple Sclerosis and Me

2005-04-27T06:28:00.000-07:00

As a further extension of the MultipleSclerosisSupport.com website I have created the following blog for our purpose behind MultipleSclerosisSupport.com, Tammy McDonald.

Tammy will be sharing her journey with MS with you at this site. Feel free to comment on Tammy's posts. I am sure she would appreciate it.