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Saturday, March 24, 2012

Caring for Hispanics with MS



Multiple sclerosis tougher on Hispanics and Latinos

Published:  Mar 21, 2012

Multiple sclerosis is hard on everyone who has the disease. But new research finds that some are worse off than others.
According to a new study, Hispanics with multiple sclerosis (MS) report more pain, fatigue, cognitive problems, mental health problems, and have more difficulty accessing mental health care, compared to a survey of the general MS population. The researchers say this points to a need for better care for the Hispanic/ Latino population.
he study was led by Dr. Robert J. Buchanan of Mississippi State University. Dr. Buchanan and his collaborators found many disparities while comparing Hispanics to a general survey of people with MS.
The research team sent out letters to 686 Hispanics/Latinos who were listed in the North American Research Committee on MS patient registry, asking them to participate in a survey. Ninety-nine of these patients agreed to be surveyed.
The patients answered questions about demographics; symptoms and disease characteristics; physician services; mental health status; MS-related feelings and experiences; and a standard Health-related Quality of Life survey, according to the National MS Society press release.
Their responses were compared to the Sonya Slifka Longitudinal MS Study, a long term study surveying two thousand people with MS. This study includes Hispanics and minorities, but they are disproportionately represented compared to non-minorities.
In terms of demographics, the responses from both studies more or less lined up. The participants were similar in terms of gender ratios, average age, education, and marital status.
They had similar types of MS, but the Hispanic respondents were likely to be younger at disease onset. Fewer Hispanic respondents were employed, but the study did not mention the reasons.
After demographics, the disparities started to become obvious.
Ninety-four percent of Hispanics said fatigue affected their daily lives, compared to 83 percent of Slifka respondents. Hispanics also had greater pain (73 percent compared to 54 percent) and 83 percent experienced cognitive problems, compared to 56 percent in the Slifka study.
Mood and emotional problems also took a heavier toll on the Hispanic respondents. They were more likely to have depression, and also reported dissatisfaction with their access to mental health care.
In terms of quality of life, Hispanics had worse scores on a survey assessing their physical function, pain, and general health, compared to the general population.
This study was a pilot study, and further research is needed. But the authors of the study recommend more support for Hispanics, and mention that providing this kind of support for a cultural group requires understanding how members of that group perceive the disease, and what factors limit their access to care.
The study was published in The Journal of Social Work in Disability & Rehabilitation.
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Thursday, March 22, 2012

MS Helping Hands: One of the most successful charities in the U.S right here in Edmonds


Did you know that Edmonds has one of the most successful charities/resources in the country — the MS Helping Hands-MSHH Donor Closet?

Founded in October 1999 by Bill and Carol Brayer of Edmonds, the Donor Closet has had to relocate four times, beginning at the Brayers’ home and now at its current location at 409 Howell Way. There is no other resource like it in the country. The current facility has 7,500 square feet of space containing durable medical equipment and mobility equipment all under one roof behind Petosa’s Family Market and directly under the Pancake Haus.

The MSHH Donor Closet was originally intended to be a resource for recycling durable medical equipment and mobility equipment to people with Multiple Sclerosis who are denied these items from Medicare, Medicaid, DSHH, insurance companies and other social service agencies. The items are recycled for suggested minimum donations.

Soon after its inception, however, it became clear that the need for such a service was far more widespread and should include not only people with MS, but any person with special physical and financial needs. Since then, the Donor Closet has recycled over 100,000 items of durable medical and mobility equipment to numerous people with MS and/or other special needs throughout the state of Washington.

MS Helping Hands–MSHH, which includes the Donor Closet, is a non-profit, all volunteer 501 (c) (3) corporation licensed and registered in the State of Washington. Since it is an all-volunteer organization, MSHH has no administrative expenses, only monthly operating costs. After all monthly operating costs are paid, the net proceeds resulting from the minimum suggested donations received for the recycled equipment are used to provide financial assistance grants to people with MS who live in Washington state and who are undergoing financial hardships.

Over $335,000 has been paid directly to the creditors of people with MS. In addition to these grants, the financial assistance grant program often assists people with MS who aren’t able to obtain Donor Closet items by providing the minimum suggested donations.

On the last Saturday of each month, the Donor Closet holds a drawing for a free recycled scooter or power chair for a person with MS who does not already have either one. In addition, MSHH is hosting an open house the remaining two Saturdays in March from 10 a.m. to 3 p.m.

Information will be available on MS, and there will be free hot dogs, chips, cookies, soda and bottled water. There will also be a drawing each week at 2 p.m. for a free scooter or power chair. You must be present to win.

For additional information about MS Helping Hands-MSHH or the Donor Closet call 425-712-1804 for MSHH, or 425-712-1807 for the Donor Closet.




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New multiple sclerosis respite ‘hotel’ concept is unveiled in York


March 21, 2012



A NEW charity has been launched in York to raise £2 million to create Britain’s first respite care “hotel” for people with multiple sclerosis and similar conditions.
The Alan Bott Centre has been set up following the Multiple Sclerosis Society’s controversial decision to close its respite care centres across the UK, including Woodlands, in Hull Road, York, which was fiercely opposed by some members.
The organisers say that, although Woodlands still existed, it was now a privately run rehabilitation centre specialising in brain injury conditions. And they claim that although it was still taking MS guests for short breaks, by July next year it would no longer provide the respite/holiday service that people using the centre during the past 20 years had come to recognise.
“The Alan Bott Centre, which is registered as a charity, is named after Alan Bott, who was the driving force behind Woodlands Respite Care Centre all those years ago,” said spokeswoman Jackie Chapman.
“It aims to make York the first city in England to provide a dedicated hotel with care support, especially for those who are wheelchair bound. York is the ideal location for such a facility because of its many attractions and open areas.”


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Balance-Based Torso-Weighting


Source: Cindy from motiontherapeutics.com 

Click here to learn of Balance-Based Torso-Weighting

I realized this treatment 10 years ago with a patient with MS. 
Research is currently being supported by NIH at Samuel Merritt University in Oakland, CA.
If you would like information regarding our RCT please contact me. I would like to share this information. 

All the best,
Cindy 


This film has been entered into the 2011 Neuro Film Festival from the American Academy of Neurology Foundation at www.neurofilmfestival.com. Let's put our brains together and support brain research. Visit www.neurofilmfestival.com. 



STUART is asking if anybody has knowledge or have used this therapy to please leave a comment on this blog site



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Wednesday, March 21, 2012

New Online Resource Helps Patients Manage Mobility Impairment in Multiple Sclerosis (MS)


TORONTO, March 20, 2012 /PRNewswire via COMTEX/ -- ~ MobilityMattersinMS.ca is the First Canadian Website Dedicated to Mobility Impairment in MS ~
Mobility impairment is the most significant physical symptom of having multiple sclerosis (MS). In fact, the results of an international study show that Canadian patients consistently rank walking as their highest priority among thirteen bodily functions including vision, cognition and bladder control, regardless of the degree of impairment or disease duration.1 MobilityMatterinMS.ca, developed by Biogen Idec Canada, is the first Canadian online resource that provides information to help patients, caregivers and healthcare professionals manage the symptoms of mobility impairment in MS.
Multiple sclerosis is a complex, neurologic disease that impacts overall quality of life with a wide range of symptoms. The international Multiple Sclerosis Quality of Life Research - IMPACT survey reveals that nearly one-half (48 per cent) of Canadian MS patients experience difficulties with mobility within one month after diagnosis,2 increasing to 92 per cent within 10 years of diagnosis.3
"Research advances have provided MS patients with improvements in the treatment of their disease, but the management of symptoms like mobility continues to be a significant challenge," said Dr. Daniel Selchen, MD, FRCPC, neurologist at St. Michael's Hospital in Toronto, Ontario. "Symptoms of mobility impairment in MS are usually progressive, and cause a profound effect on the independence, quality of life and daily activities of many patients. Patients and healthcare professionals alike require additional resources to fully assess the impact of loss of mobility and know how to better manage it."
MobilityMattersinMS.ca offers patients and caregivers information regarding the difficulties with mobility as a result of MS. Daily tips, mobility polls, event listings, real life stories and an assortment of tools such as Maximizing Your Mobility exercise videos and Mobility Matters in MS Pedometer iPhone Application, are available to help patients understand and cope with the physical implications caused by the symptoms of mobility impairment in MS.
"Physicians are consistently seeking new and innovative ways to help people with MS and their families cope with this disease," said Dr. Selchen. "MobilityMattersinMS.ca is a welcome and encouraging resource that can assist patients, caregivers and healthcare professionals with the management of mobility issues in MS."
MobilityMattersinMs.ca is an important development in the management of mobility impairment in MS as more than one-third of patients turn to online resources like social media to share their experiences with mobility difficulties.4 Family and caregivers of patients will also benefit as Canadians are the most avid viewers of online video,5 and nearly 80 per cent of people aged 16 and older, or 21.7 million people, use the Internet for personal reasons.6 Of Canadian internet users, 64 per cent of Canadian internet users search for medical or health-related information.7
Results from the IMPACT study Other results from the IMPACT study confirm the significance that MS patients and healthcare professionals place on mobility impairment. For 78 per cent of patients, mobility impairment is a constant issue8 and at least once per week, the majority of MS patients (80 per cent) experience difficulties with mobility.9 A significant number of Canadian MS patients feel limited (50 per cent) and frustrated (44 per cent)1 due to mobility impairment and its most common symptoms, which includes weakness in the legs (90 per cent), difficulty walking (88 per cent), lack of balance (88 per cent), and slowness in movement (86 per cent).11

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Multiple Sclerosis and Depression


Depression is very common in people with multiple sclerosis (MS). In fact, symptoms of depression severe enough to require medical intervention affect up to half of all people with MS at some point during their illness.

Why Do People With Multiple Sclerosis Also Have Depression?

  • Depression may be the result of a difficult situation or stress. It is easy to understand how having MS, with its potential for progressing to permanent disability, can bring on depression.
  • Depression may be caused by MS. MS may destroy the insulating myelin that surrounds nerves that transmit signals affecting mood.
  • Depression is also a side effect of some drugs used to treat MS, such as steroids or interferon.

What Are the Symptoms of Depression?

Everyone at one time or another has felt depressed, sad, or blue. Sometimes the feeling of sadness becomes intense, lasting for long periods of time and preventing a person from leading a normal life. This is depression, a mental illness that, if left untreated, can worsen, lasting for years and causing untold suffering, and possibly even resulting in suicide. It is important to recognize the signs of depression, which include:
  • Sadness
  • Loss of energy
  • Feelings of hopelessness or worthlessness
  • Loss of enjoyment from things that were once pleasurable
  • Difficulty concentrating
  • Uncontrollable crying
  • Difficulty making decisions
  • Irritability
  • Increased need for sleep
  • Inability to fall or stay asleep at night (insomnia)
  • Unexplained aches and pains
  • Stomachache and digestive problems
  • Decreased sex drive
  • Sexual problems
  • Headache
  • A change in appetite causing weight loss or gain
  • Thoughts of death or suicide
  • Attempting suicide

When to Seek Help for Depression With Multiple Sclerosis

If you have depression along with multiple sclerosis, you should seek help if:
  • Depression is negatively affecting your life -- causing difficulties with relationships, work issues, or family disputes -- and there isn't a clear solution to these problems.
  • If you or someone you know is having suicidal thoughts or feelings.

Where Should I Go to Get Help for Depression?

Once you decide to seek medical help, start with your primary doctor. He or she can evaluate you to make sure that medicines or another illness are not causing your symptoms.
Your doctor may prescribe treatment or refer you to a mental health care professional who can perform a thorough assessment so that an effective course of treatment can be recommended.


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