Monday, June 26, 2017

It is that time again ...

Health care is in the news and it is time to take action once again. The MDA Advocacy Group is asking for our help.

Health Care Reform

As health care reform debates continue in the Senate, MDA remains committed to advocating for principles of coverage set out in conjunction with leading national patient organizations that establish key elements necessary for adequate health care coverage.  The principles require that meaningful access to care be affordable, accessible, adequate and understandable.  In addition to these elements, maintaining a robust Medicaid program is essential to ensuring our community has access to the care it needs.  In May the U.S. House of Representatives passed its version of health care reform, and now that the U.S. Senate is working on its bill, we continue to work with the Senate and encourage all members of Congress to engage in a bipartisan effort to find solutions to the challenges with access to care and with maintaining the critical protections set out in the Medicaid program.  Thank you to all advocates who reached out to your members of Congress earlier this spring to advocate for the principles of coverage and Medicaid protections.  As the Senate considers its bill this week, we urge you to again ask your senators to keep the priciples of coverage in mind when moving their bill forward, and to highlight the importance of Medicaid coverage for the neuromuscular disease community.

Sunday, June 25, 2017

Congratulations Chris

I wrote about Chris Symonds sailing in the Para World Sailing Championships earlier this week. Chris lives with Kennedy's Disease, but that doesn't slow him down much.

Great news!
Chris won the Silver Medal. 
Below is a portion of the article from World Sailing announcing the medalists.

"Poland's Cichocki dominated the Men's Hansa 303 and three final day race wins handed him his second Para World Sailing title in as many years, having won gold in the SKUD18 at the 2016 Para World Sailing Championships.

Australia's Christopher Symonds fended off a late charge from Germany's Jens Kroker to seal silver. The German settled for bronze."

What a super accomplishment.

Thursday, June 22, 2017

If air travel is in your future, check this out ...

The MDA Advocacy group published the results of their survey on air travel. Below is the email the MDA sent out with a link to the full article. I have also included a link to the DOT’s annual report on disability-related complaints for air travel. It shows a 224% increase in complaints over the last ten years. That's huge, but when you consider the actual number of complaints it is staggering. 

2007 Report =13,766                               2016 Report = 30,830

And, we all know that a vast majority of problems experienced are never formally submitted to the DOT.


MDA Advocacy Newsletter

“In an effort to understand the scale and scope of challenges faced by the neuromuscular disease community when traveling by air, at the end of 2016 we surveyed the MDA community about their flying experiences. We received more than 2,000 responses, and we thank everyone who took the time to participate in the survey. We hope you'll take a moment to review the results to see how challenges with and access to air travel impact our community.

Over the past two years, MDA has made accessible air travel one of our policy priorities. We're working closely with policy makers, federal agencies, industry and other advocacy and disability rights organizations to help improve access to air travel for MDA families. For more information about traveling with limited mobility, visit MDA's Accessible Air Travel Resource Center.”

Click here to read the full article on the MDA website.


A few months ago, I called upon my readers to contact their representatives regarding this important issue. The bill introduced in the Senate recently would go a long way in helping this ongoing issue.

“While there are efforts in place to increase access to air travel, there is still much to be done to improve the rights of passengers with disabilities during air travel. Recently, the U.S. Senate introduced a bill that strengthens the rights of disabled passengers under the Air Carrier Access Act. Included in the bill are provisions to:

1. Strengthen enforcement to include specific protections of the rights of passengers with disabilities and recourse when those rights are violated;

2. Ensure airplanes are designed to accommodate people with disabilities and airlines meet accessibility standards, including safe and effective boarding and deplaning;

3. Provide better stowage options for assistive devices;

4. Improve access to seating accommodations;

5. Close service gaps in air travel for passengers with disabilities; and

6. Require that the U.S. Access board conduct a study to determine the ways in which individuals who use assistive devices can be accommodated through cabin wheelchair restraint systems.”

All of the above would help, but I especially like #6.

If interested, click here to access the annual DOT Reports on Disability-Related Air Travel Complaints.

Saturday, June 17, 2017

Chris Symonds to set sail against best in the world

The following article was written by Camron Slessor in The Advocate. We wish Chris smooth sailing and hope he brings home the cup.


Chris Symonds believes preparation will be key when he competes on the world stage later this month. 

The Wynyard Yacht Club member will travel from the North-West Coast to Germany to test his skills and compete against some of the best sailors in the world. 

The 2017 Para World Sailing Championships will be held in Kiel, Germany from June 21-26 with Symonds to be joined by coach and support Mike Darby on the trip abroad. 

Symonds has Kennedy’s Disease which is a progressive Motor Neuron condition effecting muscles throughout the body and currently there is no cure or treatment.

He will compete in the Hansa 303 male division at the event where there are 32 entrants from 26 different countries, he will be the only Australian representative in his division and this will be the first Para regatta he has attended.

Symonds said he was excited to compete on the international stage and the event was huge on the sailing calendar. 

“I’m very excited, it shows that you can compete on the world stage from Wynyard and the North-West of Tasmania, Wynyard is lucky to have so many skilled and supporting community members,” Symonds said. 

“For Para-sailing, yes it’s huge.

“Outside of the Paralympics, which only come about every four years, this regatta is so important for world sailing who have gone to huge lengths to attract entrants from 40 nations across the two fleets.”

Symonds said he wouldn’t have been able to make the trip later this month without the support of the community and his coach for the competition, Mike Darby. 

“Some emerging nations have free boat hire to get them there, realistically many people with disabilities are not so financial, so support is necessary for many.

“The support from Mike and many others is unbelievable. Considering I cannot even launch my yacht or lift myself out of it without support to do so. 

“I am sailing for the community, not myself.”

As he prepared to face the best competition in the world, Symonds said to battle against able bodied athletes would be great for him to test himself. 

“Preparation is the key. We have done all we can to be best prepared so whatever the result we should feel good about it,” he said. 

“Those with Kennedy’s Disease around the world are supporting and watching closely. 

“It shows that anything is possible even with this debilitating condition. 

“There are not any other sports that would allow me to compete equally with able bodied persons.” 

Darby will travel with Symonds as his coach and support for the trip with the pair long term rivals having sailed against each other for over 40 years.

Symonds said preparation and training had being full on for the pair since Easter with structured on water, off water, fitness, rules knowledge, boat and event preparation.

Symonds is the current Open Hansa 303 singles Tasmanian and Australian champion as well as the Asia Pacific and World Champion in the open category, meaning able bodied and mixed gender persons can compete

Friday, June 16, 2017

Another Robotic Suit

Well, actually, it is the latest version of a company’s exoskeleton.

I just read the article and saw the video on YahooNews. I went to the ReWalk website and learned more about it. It says that ReWalk is the first exoskeleton to receive FDA clearance for personal and rehabilitation use in the United States. Then I noticed that the Stair Function is currently not available in the United States.

It appears to be designed for spinal cord injuries. It also mentions rehab for stroke victims and people with Multiple sclerosis. Yet, in the FAQ Section, it mentions that people with ALS, Cerebral palsy, Traumatic brain injury, etc. can use it. So, it might be something for those of us living with Kennedy's Disease.

ReWalk has over eighty training centers in the United States and hundreds more throughout the world. I don’t know what it costs, but it appears some insurance companies and the V.A. are using it for rehab purposes.

It appears there are three different units. I grabbed this from the article. "The lightweight, small, wearable suit is much simpler than ReWalk’s device that enables paralyzed patients to stand, walk and navigate stairs. Unlike the ReWalk 6.0, which includes robotic leg attachments that can weigh nearly 50 pounds, the soft exoskeleton looks more like the harness construction workers wear for safety than a bionic system. It consists of a waist belt fitted with a motor and battery, flexible cables that transmit power from the motor to the ankles, leg braces and shoe sensors. And it’s all activated by the flick of a switch.

ReWalk has not yet determined how much the soft-exoskeleton suit will cost, but says it will be more affordable than the ReWalk 6.0, which has a list price of $77,000."

Who can use it?
Before using the device, confirm that the following prerequisites are met by the user:
  • Hands and shoulders can support crutches or a walker
  • Healthy bone density
  • Skeleton does not suffer from any fractures
  • Able to stand using a device such as EasyStand
  • In general good health
  • Height is between 160 cm and 190 cm (5′ 3″ – 6′ 2″)
  • Weight does not exceed 100 kg (220 lbs)
People with the following conditions should not use the ReWalk™:
  • History of severe neurological injuries other than SCI (MS, CP, ALS, TBI etc)
  • Severe concurrent medical diseases: infections, circulatory, heart or lung, pressure sores
  • Severe spasticity (Ashworth 4)
  • Unstable spine or unhealed limbs or pelvic fractures
  • Heterotopic ossification
  • Significant contractures
  • Psychiatric or cognitive situations that may interfere with proper operation of the device
  • Pregnancy

Monday, June 5, 2017

It’s Never Too Early or Too Late

If you are a regular reader, you know that I encourage staying active, mentally, socially and physically. Just because we have a life-changing condition, doesn't mean we have to sacrifice our life.

It is far too easy to allow the problems of the world, and with your health, to drag you down. I read an interesting article by Dr. Heather Snyder in The Costco Connection this weekend. She referenced “10 Ways to Love your Brain” from the Alzheimer’s website.

"Growing evidence indicates that people can reduce their risk of cognitive decline by adopting key lifestyle habits. When possible, combine these habits to achieve maximum benefit for the brain and body. Start now. It’s never too late or too early to incorporate healthy habits."
  1. Break a sweat. Engaging in regular physical activity. It elevates the heart rate and increases blood flow in the brain and body. We might not be able to do what we used to do, but we can still get a workout. I believe the key word here is ‘regular’.     
  2. Hit the books. Study in any stage of life will help reduce the risk of cognitive decline and dementia. Take a class; learn a foreign language, or a new instrument; or join a book club. Challenge your brain by trying something new/different.
  3. Butt out. Evidence shows that smoking increases risk of cognitive decline. Quitting smoking can reduce that risk to levels comparable to those who have not smoked.
  4. Follow your heart. Evidence shows that risk factors for cardiovascular disease and stroke — obesity, high blood pressure and diabetes — negatively impact your cognitive health. Take care of your heart and your brain just might follow.
  5. Heads up! Brain injury can raise your risk of cognitive decline and dementia. Wear a seat belt, use a helmet when playing contact sports or riding a bike, and take steps to prevent falls. I’ll repeat this last one … take steps to prevent falls.
  6. Fuel up right. Eat a healthy and balanced diet that is lower in fat and higher in vegetables and fruit to help reduce the risk of cognitive decline. Although research on diet and cognitive function is limited, certain diets, including Mediterranean and Mediterranean-DASH (Dietary Approaches to Stop Hypertension), may contribute to risk reduction.
  7. Catch some Zzz's. Not getting enough sleep due to conditions like insomnia or sleep apnea may result in problems with memory and thinking.
  8. Buddy up. Staying socially engaged may support brain health. Pursue social activities that are meaningful to you. Find ways to be part of your local community — or, just share activities with friends and family.
  9. Stump yourself. Challenge and activate your mind. Build a piece of furniture. Complete a jigsaw puzzle. Do something artistic. Play games, such as bridge, that make you think strategically. Challenging your mind may have short and long-term benefits for your brain.
  10. Take care of your mental health. Some studies link a history of depression with increased risk of cognitive decline, so seek medical treatment if you have symptoms of depression, anxiety or other mental health concerns. Also, try to manage stress.

Thursday, June 1, 2017

Federal Funding for Research Update

Good news! Thanks to many of you who contacted their Congressional Representatives, federal funding for research was increased through FY-2017.

The MDA Advocacy newsletter reported the following:

Congress boosts federal funding for research

This month we thank Congress for including a boost to research funding in the recently passed omnibus spending package that funds the federal government through the end of fiscal year 2017.  The budget package includes a $2 billion (6% increase) for the National Institutes of Health (NIH).  MDA appreciates every lawmaker that supports increased funding for biomedical research and thanks to all advocates who urged their members of Congress to help ensure that NIH received this critical funding increase.  As budgeting for fiscal year 2018 moves forward, we will continue to call on Congress to keep up the momentum by committing to robust and consistent funding increases to NIH in this and future budgets.  With four new drug approvals for neuromuscular disorders in the past year and with a robust drug development pipeline, we must continue the push to make NIH funding and biomedical research an ongoing bipartisan Congressional priority.