Paratransit Improvements Possible with Recovery Act Funds

Transportation Secretary Ray LaHood has announced that grants totaling $1.2 billion in Recovery Act funds will go to improve state and local transit systems in the United States while supporting the creation of jobs and providing much needed transportation options for millions. Many of these grants will pay for paratransit services and accessible public transportation in communities around the country.

The Americans with Disabilities Act (ADA) requires transit agencies to provide paratransit services to people with disabilities who cannot use the fixed bus route or rail service (also known as mainline service). In general, paratransit service must be provided within 3/4 of a mile of a bus route or rail station, at the same hours and days, for no more than twice the regular fixed route fare. The ADA further requires that paratransit rides be provided to all eligible riders if requested any time the previous day, within an hour of the requested time.

Your local Center for Independent Living (CIL) or Protection and Advocacy agency may be able to help resolve eligibility issues.

To find the CIL nearest you, call the National Council on Independent Living at 877-525-3400 or go to www.ncil.org. Also, find it by clicking on your state at the website of Independent Living Research Utilization at www.ilru.org/html/publications/directory/index.html.

To find the Protection and Advocacy agency for your state, contact the National Disability Rights Network at 202-408-9514 or e-mail:info@ndrn.org or www.ndrn.org.

source : MS Foundation

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Updated resources for those affected by Multiple Sclerosis

Alternative Therapies and / or Devices

Caregiver Information

Clinical Trials / Drug Studies

Links to MS Organizations (Globally)

Medications for Multiple Sclerosis

Mobility and Accessibility

MS Facts - In Languages other than English

Multiple Sclerosis Resource Links

MS Views and Related News Site Sponsors

Nutrition

Pharmaceutical / Patient Resources

Stem Cell Related Information Links

Symptoms and Symptom Management

Websites Not Directly Associated w/ MS

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A Comprehensive Listing opf Medications used to Fight Multiple Sclerosis

There is no magic pill that cures MS or relieves all of its symptoms; but there are different medications and therapies, which lessen many symptoms, shorten attacks, and may slow down the expected slow and ongoing progression of Multiple Sclerosis.

Clicking this link will bring you to a site that provides information of medications used to slow disease progression as well as a very detailed listing of medications used for each symptom of Multiple Sclerosis.

My thanks go to: Thomas J. Copeland Jr - the creator of the site used in this posting.

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How is the progress of MS measured? / The reason for keeping your score low

For many years, neurologists have used scoring systems that are based on the symptoms of MS and the findings on a neurological examination. These measure the status and - over time - progression of MS.

These scoring systems are used in clinical studies to assess how much disease has 'progressed', although they have been criticised as not being the ideal way to accurately judge the impact of a treatment on the MS disease course. For this reason, other outcome measures are also assessed in studies.

The main scale used is the Expanded Disability Status Scale (EDSS) which was developed by Kurtzke in 1983 and measures Neurological impairment (or the damage to the functioning of the brain, optic nerves and spinal cord) in people with MS.

The EDSS score is one of the criteria used to decide whether a patient with MS is eligible to start on disease modifying drugs.

Read More on EDSS

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A History data paper says the following:

It's Very important to stay below an EDSS of 3, because Once you hit an EDSS of 4, you progress down hill. Higher scores indicating more severe disability.

This data is from:

RELAPSES AND PROGRESSION OF DISABILITY IN MS - article.

The New England Journal of Medicine Nov 16, 2000 volume 343 number 20.

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There are 14 Biogen Idec-sponsored TYSABRI posters and presentations during the Congress. Key data from these includes an analysis showing that TYSABRI may aid in the repair of MS-related damage to the myelin sheath, as well as possibly protect it from further damage (Natalizumab (Tysabri^®) Promotes Remyelination in Patients with Multiple Sclerosis.

A Voxel-Wise Magnetization Transfer Imaging Case-Control Study –P03.071). Another key poster will present data from a post-hoc analysis showing that select patients with relapsing MS saw an improvement of physical function as measured on the EDSS scale (Sustained Improvement in Physical Disability with Natalizumab in Patients with Relapsing Multiple Sclerosis –P06.131).

A presentation will provide updated TYSABRI safety and utilization information (Natalizumab in Patients with Relapsing Multiple Sclerosis: Updated Utilization and Safety Results including TOUCH™ and TYGRIS – S11.005).

This info on Tysabri found here

And then we recall the information found in our next blog posting:

Effect of natalizumab on clinical and radiological disease activity in multiple sclerosis

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Effect of natalizumab on clinical and radiological disease activity in multiple sclerosis

A retrospective analysis of the Natalizumab Safety and Efficacy in Relapsing-Remitting Multiple Sclerosis (AFFIRM) study

Summary:

Background

The efficacy of natalizumab on clinical and radiological measures in the phase III Natalizumab Safety and Efficacy in Relapsing-Remitting Multiple Sclerosis (AFFIRM) study has prompted the investigation of whether natalizumab can increase the proportion of patients with relapsing-remitting multiple sclerosis who do not have disease activity.

Methods

Post-hoc analyses of data from the AFFIRM study were done to determine the effects of natalizumab compared with placebo on the proportion of patients who were free of disease activity over 2 years. Absence of disease activity was defined as no activity on clinical measures (no relapses and no sustained disability progression), radiological measures (no gadolinium-enhancing lesions and no new or enlarging T2-hyperintense lesions on cranial MRI), or a composite of the two.

Findings

383 (64%) of 596 patients taking natalizumab and 117 (39%) of 301 taking placebo were free of clinical disease activity (absolute difference 25·4%, 95% CI 18·7—32·1%, p<0·0001);>

Interpretation

Disease remission might become an increasingly attainable goal in multiple sclerosis treatment with the use of newer, more effective therapies.

SOURCE: The Lancelet.com

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"Wanted, your life experiences for possible publishing in a book about disabilities".

"Wanted, your life experiences for possible

publishing in a book about disabilities".

Please email Teresa

pippa@mchsi.com

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MULTIPLE sclerosis (MS) delivers a massive blow to your job prospects as well as your health, Australian research shows.

MULTIPLE sclerosis (MS) delivers a massive blow to your job prospects as well as your health, Australian research shows.

The auto-immune disease, in which the body's immune system attacks the central nervous system, forces almost two-thirds of its sufferers out of the workforce.

New findings from the Australian MS Longitudinal Study shows that 64 per cent of Australians with MS are no longer in paid work.

To read more Click: Disease a big blow to job prospects

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Home Care Grant program for people with Multiple Sclerosis

Homecare Grant Program

The MSF understands the daily needs and challenges that must be met by individuals with MS and their caregivers. In order to meet these needs in the most timely and efficient manner, theMSF Home Care Assistance Grant Program serves as a liaison between the patient and the local resources that are available to meet his or her specific needs. Should resources within the patient’s community be unavailable, direct support will be provided on a temporary basis through the MSF Home Care Assistance Grant Program.

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Learn more of this Home Care Grant Program from the MS Foundation

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Coping with MS : For Families and Caregivers

Source: MS Foundation

A Lifesaver For Caregivers
Anger as Ally: Experiences in Caregiving
Caregiving: Understanding Resistance
For Family and Friends: How You Can Help
Caring for the Caregiver (Transcript)
The Irony of Caregiver Guilt
Bathing Basics for Caregivers
Caregivers: Secure Your Own Oxygen Mask First

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The Search for Causes, Treatments, and a Cure

Source: MS Foundation

MS Drugs in the Pipeline
The Importance of Clinical Trials
The Search For A Cause of MS
MS and Autoimmune Thyroiditis
Making Sense of MS Research (Transcript)
The Genetic Connection
Shades of Gray: MS Misconceptions, Misunderstandings, and Misinterpretations
15 Years of MS Therapy
What About the Side Effects?
Oral Medications for MS Treatment
The Potential Role of Chemokines in Remyelination

Audios:

The Potential Role of Chemokines in Remyelination

What About the Side Effects?

Shades of Gray: MS Misconceptions, Misunderstandings, and Misinterpretations
MS Drugs in the Pipeline
Connectivity Among Autoimmune Diseses,Including MS

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For MS: Treatments, Promoting Function, Independence, and Mobility

Source: National MS Society:

Treatments for Multiple Sclerosis: http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/index.aspx

Promoting Function, Independence, and Mobility: www.nationalmssociety.org/living-with-multiple-sclerosis/mobility-and-accessibility/index.aspx

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Multiple Sclerosis Related: Assistive Devices

An assistive device is a tool or implement that makes a particular function easier or possible to perform. An assistive device may be as simple as an electric toothbrush, or as elaborate as an environmental control system that can be operated with a mouth switch by persons who have lost the use of their limbs.

Assistive devices can help persons with disabilities perform many activities of daily living.

• Bathing and Showering
  Tub and wall grab bars can help persons with MS get in and out of the bathtub and keep their balance while showering.
• Grooming and Dressing
  Button and zipper hooks can be used to fasten clothes. Velcro on clothes and shoes or elastic shoelaces can make it easier to get dressed. Combs, brushes, and toothbrushes can be fitted with easier-to-hold handles.
• Cooking and Housekeeping
  Devices such as electric can openers, rocker knives that minimize wrist motion and strength needed to cut, and cookware designed for those with limited hand, wrist, and forearm strength can make cooking manageable. The heavy lifting and bending often involved in housekeeping can be minimized by putting cleaning supplies and equipment on wheels and by using long handled dusters, brooms, and sponges. Reachers can help grasp objects on shelves or in closets.
• Writing and Reading
  Special grips have been designed to enable a person to securely, yet comfortably, grip a pen or a drawing implement. Special lenses and magnifying devices may correct some visual problems associated with MS.
• Mobility
  Braces, canes, or walkers can help those who have trouble walking. Wheelchairs and electric scooters can provide mobility for those who need additional assistance. Transfer boards and lifts can be used to help people with MS get in and out of a bed, tub, automobile, or wheelchair.
• Driving
  After assessment by an occupational therapist, driving may be safely accomplished with the help of hand controls, low-energy steering wheels, and other aids.

Assistive devices are usually prescribed by a physiatrist, or by an occupational, physical, or speech/language pathologist, following referral by a physician. There are many catalogues and surgical supply stores that are excellent sources for assistive devices.

• ABLEDATA
  National database of assistive services for people with disabilities.

Source: National MS Society: http://www.nationalmssociety.org/living-with-multiple-sclerosis/mobility-and-accessibility/assistive-devices/index.aspx

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Opening Doors with Assistive Technology

Source : MS Foundation

An Overview of What Is Available and How to Get It?
By: MSF Staff and reviewed by the Multiple Sclerosis Foundation Medical Advisory Board

You've probably heard the phrase when one door closes, another opens. This is especially true of assistive technology (AT), which is opening doors that were previously closed to those with disabilities, in infinite and innovative ways. AT options are growing at a tremendous rate, providing long-awaited and much needed devices for improving and simplifying nearly every area of life. Even a decade ago, the National Council on Disability reported impressive results in the day-to-day living of those utilizing the benefits of AT. Their study showed that 65 percent of working age adults were able to reduce dependence on their families, 58 percent were able to reduce dependence on paid assistance, and nearly 40 percent were able to increase their earnings. In the elderly, AT reduced dependence on others by a promising 80 percent.

AT is classified according to need and disability. Daily living or home management aids offer a variety of self-help devices for bathing, grooming, cooking, eating, dressing and other daily duties. Everything from fine point tweezers with a built-in magnifier to adjustable height sinks and countertops are available. Performing tasks such as meal preparation, cleanup, bathing and grooming may seem insurmountable without assistance. With the current advances in AT, however, these tasks are now within your reach.

Continue to read this assistive technology update from the MS Foundation website

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Pediatric Multiple Sclerosis Research

MS was once thought of as just an adult disease, but, increasingly it is becoming more and more apparent that children and teenagers also are affected by this disease. To reflect this MSRC have created a seperate section devoted to this often overlooked community of people with Multiple Sclerosis. Below you will find the latest breaking stories on Paediatric MS Research. More news can be found in New Pathways Magazine, our bi-monthly publication, and also check daily at MSRC: Latest MS News. MS In Children A study published June 21 in the New England Journal of Medicine sheds new light on the course of multiple sclerosis in children. The findings include: Children are more likely to have a relapsing and remitting form of the disease characterised by flare-ups followed by complete recovery. It takes longer for people whose MS begins in childhood to become disabled as a result of the disease. Girls are more likely than boys to get MS as children. Children with MS may have one key symptom called optic neuritis -- inflammation of the optic nerve that can cause vision problems.

READ more on Pediatric MS from the MSRC website

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Vibration therapy in multiple sclerosis

Information provided by Karen D. in Tamarac, Fl.,

Vibration therapy in multiple sclerosis: a pilot study exploring its effects on tone, muscle force, sensation and functional performance.

Gartnavel General Hospital, NHS Greater Glasgow & Clyde - North, Glasgow, UK

Objective: To examine the effectiveness of whole body vibration (WBV) on tone, muscle force, sensation and functional performance in people with multiple sclerosis.

Design: A randomized cross-over pilot study.

Setting: Revive MS Support Therapy Centre. Glasgow, UK.

Subjects: Sixteen people with multiple sclerosis were randomly allocated to one of two groups.

Intervention: Group 1 received four weeks of whole body vibration plus exercise three times per week, two weeks of no intervention and then four weeks of exercise alone three times per week. Group 2 were given the two treatment interventions in the reverse order to group 1.

Main measures: Ten-metre walk, Timed Up and Go Test, Modified Ashworth Scale, Multiple Sclerosis Spasticity Scale (MSSS-88), lower limb muscle force, Nottingham Sensory Assessment and Multiple Sclerosis Impact Scale (MSIS-29) were used before and after intervention.

Results: The exercise programme had positive effects on muscle force and well-being, but there was insufficient evidence that the addition of whole body vibration provided any further benefit. The Modified Ashworth Scale was generally unaffected by either intervention, although, for each group, results from the MSSS-88 showed whole body vibration and exercises reduced muscle spasms (P = 0.02). Although results for the 10-m walk and Timed Upand Go Test improved, this did not reach statistical significance (P = 0.56; P = 0.70, respectively). For most subjects sensation was unaffected by whole body vibration.

Conclusion: Exercise may be beneficial to those with multiple sclerosis, but there is limited evidence that the addition of whole body vibration provides any additional improvements. Further larger scale studies into the effects of whole body vibration in people with multiple sclerosis are essential.

SOURCE: SAGE Journals <<>

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Blood test could predict severity of multiple sclerosis

source: TimesOnline-UK

August 31, 2009 - advanced copy

Mark Henderson, Science Editor

A blood test that could predict the severity of multiple sclerosis (MS) is being developed by British scientists, promising to improve clinical management of the neurological disorder.

Research has identified a biological marker in blood that seems linked to patients’ prognosis after the first MS attack, paving the way for a new approach to assessing how the illness will progress. If a blood test based on the biomarker can be validated, it could be used with MRI scans and other methods to improve diagnosis.

Patients whose MS is thought likely to progress quickly could be started swiftly on therapies that can reduce the frequency and severity of attacks, while those at lower risk could be spared medication they do not need immediately. More accurate ways of assessing prognosis could also help to prepare patients for what they should expect in the future, removing the uncertainty that can be a distressing feature of the disease.

Continue reading this information on predicting severity of MS through a blood test

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re: A dating website designed for persons from the disability community

This message is for bloggers and others with a website that may want to earn a little something extra

Hello.

I’d like to tell you about an organization I’ve recently become involved with and invite you to join me.

www.Datebility.com is a dating website designed for persons from the disability community. They offer such unique capabilities as “virtual date”, a technology that allows members to experience dating in a comfortable and playful environment. There are also featured bloggers on many subjects that your members will find of value, and entertaining. Further, recognizing that no one really knows how long it will take to find that perfect partner, Datebility.com offers only a lifetime program with a one-time fee of $37.99; so members needn’t rush their search or worry about their credit cards being hit every month for more money.

By simply placing one of their banners or linked content on your website and/or newsletter, you can earn $15.00 for each paid member you send to their site. I invite you to fully check out their site at www.datebility.com. Register using the discount code [ Scott ] and you will not be charged. Once you decide to join, simply click on http://affiliate.datebility.com and register.

Where it asks for Parent Affiliate, please enter Stuart Schlossman.

Datebility.com offers not only a chance to provide real value to your members, but the chance to generate significant income for your cause. Please call or email with any questions you may have, and feel free to forward this on to other site owners and charities who have members you think may benefit.

View a PowerPoint Presentation by Clicking this Link: http://www.box.net/shared/iqys34yupt

Sincerely,

Stuart Schlossman

p.s. - why allow an opportunity such as this, pass you by

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A report from Italy on Stem Cells and Multiple Sclerosis

Published

by

Stem Man

on 29 August 2009

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“Gianvito Martino, the head of the Neurosciences division at the Institute of San Raffaele in Milan in a speech at Multiple Sclerosis Week, which took place from May 23-31, warned against “trips of hope to clinics that promise effective treatments using stem cells”.

According to Martino, who coordinated a Consensus Conference on last Tuesday in London on theneurodegenerative disease, where the guidelines for pre-clinical studies and clinical treatments with stem cells were defined, “hundreds of Italian patients each year go on these trips due to cures that are promised. In the best-case scenario, these patients return in the same condition in which they departed, but with a little bit less money. However, there are also many cases of infections and tumors.”

These stem cell clinics are found in various countries all over the world, including China, Thailand, the Dominican Republic, Manila, and Barbados. “They assure 40%-50% effectiveness and that they are able to treat any type of problem, from baldness to Alzheimer’s as well as muscular sclerosis, but they do not say anything about the type and quality of stem cells that they use. They use the placebo effect to indicate very few positive outcomes, but in the end, no one knows what is responsible for the cures.” Martino thinks that in many cases patients are given water instead of stem cells, or cortisone in order to give a few days of perceived improvements and to feed the illusion.

LISTEN or continue reading: Expert warns against uncontrolled treatment advertsied in foreign countries

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Norwood Hospital to offer schooling on MS

By Lindsay Briggs/Daily News staff

Daily News Transcript

Posted Aug 28, 2009

Norwood -- Experts in the treatment of multiple sclerosis will provide insight into the complex neurological and autoimmune disease in a six-part lecture series at Norwood Hospital.

"This is an opportunity for us to give the public some new information on therapies and on symptom management, and updates of symptom therapy," said Dr. Salvatore Napoli, neurologist and medical director of the hospital's Multiple Sclerosis Center.

Multiple sclerosis is a chronic illness that affects the brain and spinal cord, resulting in loss of muscle control, vision, balance and sensation. More than 400,000 Americans have MS, including as many as 1,300 Norfolk County residents, according to the New England Chapter of the National Multiple Sclerosis Society.

Continue reading Schooling on MS

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Treatment Worse than MS ??? - part 2

On August 18th, I posted an article from our Ask an MS Nurse, that has drawn several comments (posted on this blog) several others that posted their replies on Facebook and yet a few more who just had to send their remarks directly to me .

If you click this link: Treatment Worse than MS?" , you will have access to the original article posting.

Maybe you missed seeing it the first time, maybe you wanted to leave a comment and felt timid.

Now, you can read what others have said (that posted to this blog link) and if you want to comment, then please do so...

For those using facebook, please leave any comments that you may have for the original posting, by clicking on the link found above.

Thank You

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MS Related: Generic versions of biologic medications are coming

Aug 28, 2009, 4:57 p.m. EST

Companies most likely to produce biogenerics

By Val Brickates Kennedy, MarketWatch

BOSTON (MarketWatch) -- The days of market exclusivity could soon come to an end for the biotech industry if Congress moves forward with plans to finally allow generic biologics on the U.S. market.

Because of their eye-popping price tags, pressure to rein in the cost of biologics has been mounting on Capitol Hill for some time. A process for approving generic versions of traditional chemical medications has been in place for more than a decade, but Congress has yet to establish a similar legal pathway for biologics.

But all that could change in the next few months. Currently, almost all of the leading healthcare reform bills circulating on the Hill call for allowing the Food and Drug Administration to establish an approval process for generic biologics, also known as biogenerics or biosimilars.

Continue reading

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New MobilityMagazine oulook on Facebook

This mentionable note appears in the September issue of New MobilityMagazine:

Why Does Facebook Matter?
For one thing, just about everyone’s doing it. A recent New Mobility survey determined that more than 70 percent of our readers have Facebook accounts. While Facebook is sweeping the mainstream population as well, those with disabilities are finding ways of connecting that just didn’t exist before. If not for social networking or advocacy, then perhaps for purposes of marketing, self-expression, or finding those long lost classmates. Whatever the reason people get drawn into the Facebook culture, one thing is for sure: The term ‘friend’ is being redefined in ways no one could have imagined just a few short years ago.

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