|
|
|
|
 |
Q: I’ve just read about the risks of deep vein thrombosis for people who spend a lot of time sitting in one place, especially when flying or traveling in general. What should people with ALS know about this and should we be doing anything in particular to prevent it? Dr. Kasarskis: That’s a good question. Deep vein thrombosis, or DVT, (also sometimes called venous thromboembolism in its most severe form) is basically the presence of a thrombus or clot within a large blood vessel, usually the veins in the legs. DVT can reduce the blood return from the legs to the heart, but is most significant if detached fragments of the clot travel to the pulmonary arteries in the lungs (termed “pulmonary embolism”, or PE). In general, we don’t see too many people with ALS with serious complications from deep vein thrombosis. But the immobility or reduced mobility that accompanies ALS puts people with ALS at risk for the problem, even if they’re not traveling. Symptoms of DVT include swelling, pain and redness in the leg and symptoms of PE can include extreme shortness of breath and chest pain. PE can be life threatening and requires immediate attention in the ER. The risk of DVT and PE increases with immobility, for example, on longer trips, although it is still relatively small. If you’re planning on taking a trip, talk with your physician before you go and ask about whether you should be taking an aspirin daily, or wearing below the knee anti-embolic stockings which compress the legs and help prevent the formation of clots. And whether you’re traveling or at home, be sure you take in plenty of water and limit alcohol and caffeine to help prevent dehydration. Do simple leg exercises, like flexing your calf muscles against a foot rest while you’re sitting down, to keep your muscles moving, promoting circulation. Even passive exercises when someone else moves and bends your legs and ankles for you can help. And if you can get up and walk around, whether driving or in a train or a plane, be sure to do so. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. The Benefits of Furry, Feathered and Even Scaly FriendsYou come home from a long visit at the doctor’s office, ran into a gigantic traffic jam, and find the day’s mail full of hassles, big and small. You’re exhausted and frustrated. But then your dog comes running to see you, wagging his tail as fast as he can, eager to lick your face. Suddenly, it’s all a little better.
There are a host of research articles pointing to the benefits, including reducing blood pressure, providing relaxation, and increasing appetite. Says biologist Erika Friedmann, in Newsweek (1/11/2008), “Any disease condition that has a stress-related component to it, we believe pets could ameliorate stress and moderate the situation. It’s providing a focus of attention that’s outside of someone’s self. They’re actually letting you focus on them rather than focusing inward on yourself all the time.”
Some people will insist you need a warm and fuzzy cat or a dog, but experts say fish, birds and even reptiles can do the trick if you enjoy having them. No matter what you select, here are some tips to make things a bit easier:
-- Between Pets and People: The Importance of Animal Companionship, by Alan Beck and Aaron Katcher -- Made for Each Other: The Biology of the Human-Animal Bond, by Meg Daley Olmert Creature Comfort: Animals That Heal, by Bernie Graham Find Out More About the Care ConnectionYou don’t have to be alone on this journey. It’s easy for people with ALS and their families to become overwhelmed by the wide range of needs they have, from everyday errands to making meals, maintaining their home, getting children to and from school, and so much more. It’s hard to know when to ask friends and neighbors for help, and how to organize their availability. And for those who want to offer a helping hand, it’s difficult to know just what is needed and how you can make a difference.
The program provides a plan for organizing help, training and information about what approaches tend to be most effective. The Care Connection uses a website, lotsahelpinghands.com, that allows volunteers to sign in and see the community calendar where tasks are posted by a volunteer coordinator. It’s easy to see what people have already signed up to do and what still needs volunteers. The website shows activities based on type of need (meals, rides, babysitting, grocery shopping) and calendar days, and it’s simple to use. Watch this video: http://www.alsa.org/patient/caregivers/careconnection.cfm. Call your local ALS Association chapter to see if they’re featuring the Care Connection program, or contact the national office of The ALS Association for more information. The office is open every business day from 7:30 a.m. to 4 p.m., Pacific Time, at (800) 782-4747 or send an email to alsinfo@alsa-national.org. Special Update: Flying with Vent,
|
 |
The labels don’t even exist yet for BiPAP devices. And some airlines have taken the rule to mean that without the label, they must not allow people to use respiratory equipment in flight.
Here’s what you need to know:
 |
The Department of Transportation (DOT) ruling was meant to tell airlines they could NOT prohibit the use of the equipment if it had the necessary label. But the ruling does NOT prohibit the airlines from letting people use their equipment if they feel it is FAA-compliant. |
|
Most respiratory device manufacturers were not prepared for the May ruling and haven’t developed labels or procedures for disseminating them yet. |
|
If you’re planning to fly, call your carrier well in advance of your flight and tell them the make and model of your respiratory equipment. Ask the airline if you may speak with their Complaint/Compliance Resolution Officer, or CRO, to ensure your equipment meets FAA requirements. |
|
There is a DOT phone number for people with disabilities who have questions or complaints: 800.778.4838. |
 |
Survey responses are confidential.
To access the online questionnaire, go to the Penn State Hershey ALS Clinic Website www.pennstatehershey.org/als and click on the link “ALS Patients: Click here to participate in a research survey.”
For more information or to request a paper copy of the questionnaire, contact the study coordinator, Beth Stephens, at (717) 531-0003, extension 283395, or by email at hstephens1@psu.edu. The study director is Zachary Simmons, MD, Department of Neurology, Penn State College of Medicine.
This research study has been approved by the Institutional Review Board, under federal regulations, at Penn State College of Medicine, Penn State Hershey Medical Center.
More and more corporations are recognizing the value of getting involved with The ALS Association’s Walk to Defeat ALS®. It’s a great way to support the community, it fosters employee teamwork, and it’s a fun and rewarding way to help find treatments and a cure for people fighting Lou Gehrig’s Disease.
"We have 60 people in our office and we have 42 walking…we have another 8 to 10 volunteering, so that is about 90 percent of the people participating. We really couldn't think of a better way to spend a Saturday,” said Brian Higgins, senior customer manager for General Mills about the Walk.
Corporations are helping the event to expand and make even more of an impact as it nears its 10th anniversary.
“The Corporations that embrace the Walk have helped elevate it to one of the premier fundraising events in this country, and they can feel good about helping lead the fight against ALS,” said Jane H. Gilbert, president and CEO of The Association.
The Walk to Defeat ALS is expected to draw approximately 140,000 annual walkers to Walks in 150 cities this year and the goal is to raise $18 million. When the Walk began in 2000, the goal was to raise between $50,000 and $100,000.
“By 2012, we expect funds generated by corporate Walk teams to represent about 35 percent of total Walk revenue," said Marilyn Simon-Gersuk, ALS Association vice president of development.
The involvement of such corporations as Booze Allen Hamilton, which helped The Association develop the Walk program, PepsiCo, Walmart, Quicken, Blue Cross/Blue Shield, Permobil and many others has immensely boosted the event’s revenue from $9.8 million to $16.4 million in just three years.
"ALS is a disease that is very crippling," said Terry Orman, business development manager for Frito-Lay and PepsiCo. "Between PepsiCo, Frito-Lay and QTG (Quaker, Tropicana, Gatorade), we put together a (Walk team) plan that we thought might elevate the support we could get for ALS."
The ALS Association and corporations have benefitted from the partnership and as a result are accomplishing many of its goals.
“More people are turning out to the Walk and raising money to fund ALS Association programs that support research and services for people with Lou Gehrig’s Disease and their families,” said Ashton Chase, senior director for National Signature Events at The Association. “Corporations have discovered that participating in the Walk demonstrates good corporate citizenship, and their employees feel good about supporting a great cause.”
Corporate involvement in the fight to defeat ALS is of vital importance to patients and caregivers.
“It means so much to us when VIPs and employees from the business community take time out from their busy schedules to support our cause,” said Charles Fritz of Prairie Village, Kan., whose wife Marlene has ALS.
The uplifting spirit of the Walk has become attractive to corporations and employees because they are giving back to the communities where they live and work while having fun and teaming with fellow employees.
“This experience has been extremely positive for us,” said Don Frieson, senior vice president of Walmart. “We have a huge Walk team. Our associates have been incredibly supportive. I would encourage any company that really wants to rally around a cause, around people, that the Walk is it.”
Private federal and state employees who participate in the annual Community Health Charities (CHC) and the Combined Federal (CFC) workplace giving campaigns in September and October and choose The ALS Association as their charity of choice will enhance the quality of life for people with ALS and their caregivers, who are most often family members.
Workers who check national CFC code #11997 on CHC or CFC forms distributed on the job, and then specify that a small percentage of their paycheck be deducted for one year, will help make it possible for The Association’s national network of 42 chapters to continue helping people with ALS and their caregivers. Services and programs provided by chapters include assistive technology, equipment, respite care, transportation and educational seminars.
“The people we help 24 hours a day, seven days a week are very aware that the full range of resources we encourage them to take advantage of is funded in part by such programs as Community Health Charities,” said Sharon Matland, vice president of patient services for The Association. “Equally important to people living with this disease as well as their caregivers is knowing that so many people love and care about them.”
In addition, contributions will be used to support The Association’s global research program focused on finding new therapies and a cure for ALS.
“Every year, the generous workers of this country make it possible for researchers to edge closer to a major breakthrough,” said Jane H. Gilbert, president and CEO of The Association. “Each dollar goes toward the combat and defeat of this dreaded enemy.”
The Association has funded research in more than 18 countries by conducting “research with no borders” and is involved in more than 80 diverse research projects around the world.
“The ALS Association realizes that answers can come from anywhere in the United States or around the world and that is why we search out and partner with research scientists from leading institutions all over the world,” said Dr. Lucie Bruijn, senior vice president of research and development for The Association. “We have created an international network of over 400 researchers from many disciplines of medicine, science and technology.”
The Association is a proud member of CHC, a family of this country’s most trusted health agencies working to improve the health of communities through health education, volunteerism and charitable donations.
Please check with your company to see if it participates in the Community Health Charities/Combined Federal Campaign workplace giving program.
Private companies and federal or state agencies not participating this year can be considered for the 2010 campaign by contacting Bonnie Robbins, director, national signature events, national office, The ALS Association, at brobbins@alsa-national.org.
The ALS Association's mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Click here to contact your local chapter, certified center or clinic.
| Questions or comments?
E-mail webmaster@alsa.org or call 800-782-4747.
|
Researchers, veterinarians and psychologists agree that pets can be good for your mental and physical health. Pets’ antics and attention can help take your mind off your problems, relieve loneliness, and provide dedicated, unconditional love.
Resources: