Health and Well Being

Nan Carpenter

Health & Well-Being

ALS patient looks on the bright side, finds help David and Carol Allen

A Special Publication of The Addison Independent • October 20, 2014

By ANDY KIRKALDY FERRISBURGH — Back in 2011, Ferrisburgh resident David Allen began to have trouble lifting the mail he had to deliver for his longtime job with the Middlebury Post Office.

His back was also bothering him, especially after the post office switched to a standard delivery vehicle and Allen couldn’t use his own car.

“He couldn’t adjust his seat, so his back was bothering him,” said Allen’s wife of 27 years, Carol Allen. “That’s why he thought he couldn’t lift, because his back was bothering him.”

At about the same time, Allen, now 67, was finding it more and more difficult to (See David Allen, Page 4)

PAGE 2 — Health

& Well-Being • Addison Independent, Monday, October 20, 2014

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Tips for choosing the Medicare Plan that is right for you

By DAVE REVILLE, AARP Vermont Medicare can help protect you or your loved one’s health, financial security and future. This year’s Medicare open enrollment season runs from Oct. 15-Dec. 7. If you’re 65 or over, you can review your Medicare options and change plans if you’d like. In fact, each year you have a chance to review your coverage and see what new benefits Medicare has to offer.

If you’re satisfied that your current plan will meet your needs for the next year, you don’t need to make any changes. But it’s worth it to look at your options. Your health may change over time, and you may want to find a plan that works better for you. And if you are caring for someone who needs or has Medicare, you can also help that person navigate Medicare during open enrollment.

I encourage you to take some time to get to know how your Medicare works. Visit the AARP Medicare Question and Answer tool at www.aarp.gov/MedicareQA to find answers to common questions. When you are confident Medicare has you covered, you can focus on turning your life goals into real possibilities.

What to Consider When Selecting a Medicare Plan You can compare Medicare coverage options on the Medicare Plan Finder at www.

Medicare.gov. Click on “Find Health & Drug Plans.” When looking at your options, consider the four C’s: coverage, cost, convenience and customer service.

1. Coverage. Make sure that the doctors you see and the medications you take will still be part of your plan in the coming year. If upcoming plan changes affect your coverage, then it’s important to review other Medicare cover-

age options.

2. Cost. Like most other insurance, Medicare does not pay for all your health care costs. You are responsible for paying for expenses such as deductibles, coinsurance and co-payments. If two or more plans seem to offer about the same coverage, consider choosing the plan with the lowest overall cost.

Remember, don’t just look at the premium (monthly payment). Also consider the deductible (how much you pay out-of-pocket before insurance kicks in), and coinsurance and copayments (how much you pay out-of-pocket for each service like visiting a doctor or filling a prescription). Make sure to compare all of these features so you can find a plan that works for you and your wallet.

3. Convenience. Compare plans to see which doctors and hospitals are included in the coverage, as well as what local pharmacies participate. If you prefer mail-order pharmacies, check out which plans offer this option.

4. Customer Service. The Medicare plan finder tool on www.Medicare.gov provides a quality rating for each plan. The rating covers several aspects of each plan, including customer service, member complaints, drug pricing, managing chronic conditions and more.

All plans now cover certain preventive services at no cost to you, thanks to the Affordable Care Act. These include screenings like mammograms and colonoscopies and annual wellness visits with your doctor.

For one-on-one help with your Medicare decisions in Vermont, contact the Vermont State Health Insurance Assistance Program by phone at 800-642-5119 or find a program near you online at www.medicarehelpvt.net/aaa.html.

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By CHRISTY LYNN Middlebury Indoor Tennis (MIT) and Sojo Tennis this weekend will host a tennis tournament to assist a Vermont organization that supports cancer survivors and their families.

All tennis players — not just MIT members — are invited to take part in the Tennis Tournament to Benefit the Vermont Cancer Survivor Network, which will feature doubles play in a fun, three-day competition.

Tennis is often considered a life-long sport, one that people can pick up anytime throughout their lives. MIT organizers and representatives from VCSN see this tournament as a great union, communicating a dedication to life-long well-being through a supportive hobby that both is fun and supports your health.

Franz Collas, who is MIT’s head tennis professional and Sojo Tennis owner and coach, is leading the tournament with Heather Potter, program administrator and a tennis enthusiast at the club.

Health & Well-Being • Addison Independent, Monday, October 20, 2014 — PAGE 3

Middlebury tennis club readies for upcoming tournament

Over this past summer, Collas and Potter were looking for a charitable cause around which to build a public tournament. Middlebury Indoor Tennis had not run an open tournament for over five years and it seemed like a good time to put something together, they said.

“We know there’s a lot of tennis being played out there, but it can be really difficult to get people to participate in a tournament,” Collas said.

“So we wanted to be able to connect it

CINNY LAWRENCE IS pleasantly surprised after making an amazing shot during a group tennis lesson in Middlebury recently. Tennis is a life-long sport that can help people of all ages build a sense of well-being and good health.

Independent photo/Trent Campbell

Your eyes aren’t just your windows to the world – they’re also windows to your health.

Eye conditions such as glaucoma, cataracts, and macular degeneration aren’t all that an eye doctor can find.

Medical conditions such as diabetes, high cholesterol or blood pressure, and heart disease can be detected too.

to a great cause that really got people out and VCSN, said Potter. excited.”

VCSN is a statewide organization that was Around the same time, representatives from founded in 2007 by cancer survivors with Susan G. Komen’s Rally for the Cure, a na- a mission to provide supportive programs, tional breast cancer awareness and prevention information and education for cancer organization, contacted MIT to see if it was patients, survivors and their support networks interested in hosting a tournament to support throughout Vermont. Kindred Connections their cause. is a social network run through the VCSN “It is a with meeting groups in several communities great orga- around the state. nization and Cancer patients and their friends and family certainly got can use these networks as resources for us thinking on questions and peer support throughout their the right track,” diagnosis and treatment.

Potter said, “but as Sherry Rhynard, program director at VCSN, we looked into Rally is thrilled to be partnering with MIT for the for the Cure and tournament. learned more about “When “We started the Kindred the organization, we Connections program in Addison felt we could find a better someone is County about a year ago and have diagnosed fit for our club.” been looking for ways to expand Potter and Collas as well as with cancer our network in Addison County,” David and Eleanor Ignat, who have everyone she said. “As a small organization run MIT since it opened in 2001, around them is that relies primarily on grassroots believed that the tournament should we were very excited when affected. It has support, be run such that 100 percent of the the organizers from MIT came to us money raised from the event could a ripple effect.” with the idea for this tournament.”

— Sherry Rhynard be donated to a local nonprofit One of the principal messages organization. that VCSN advocates to cancer The Vermont Cancer Survivor Network was survivors as well as family members and therefore identified as an organization that the support people is to continue engaging in event leaders were comfortable supporting and physical activity throughout the periods of working with for the tournament. At least for illness as well as through the rehabilitation the first year, the organizers were committed process. to relying exclusively on donations to host the “When someone is diagnosed with cancer tournament and therefore being able to donate everyone around them is affected,” Rhynard every dollar raised in the tournament back to (See Tennis, Page 6)

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PAGE 4 — Health

& Well-Being • Addison Independent, Monday, October 20, 2014

David Allen

(Continued from Page 1) meet the demands of his job.

“I started to lose energy at the end of the day,” Allen said. “I couldn’t keep up the pace, so I knew something was wrong.”

Allen also experienced an episode of irregular heartbeat, or atrial fibrillation, known as afib. He and Carol and their doctors focused on heart problems.

Then dramatic weight loss followed, Carol said.

“He lost like 15 pounds in a couple weeks.

DAVE ALLEN OF Ferrisburgh credits his upbeat attitude and the support of his wife for maintaining a high quality of life despite his diagnosis of ALS, a progressive neurological disorder with no known cure.

And he went to the doctor and they ran a couple more tests, and he lost 15 more pounds in the next three weeks,” Carol said. “So they were checking his heart, because that was the concern, because he already had afib once, and when he had to take his shirt off we could see muscle twitching in his shoulders. The weight loss was probably the first sign, but we didn’t attribute it to that. And then the muscle twitching sent us to the neurologist.”

There was still no answer.

“We didn’t have the diagnosis yet. We knew something was wrong,” Carol said. “It took a year to get the diagnosis.”

All these issues cropped up in late 2011 and early 2012. In May 2012, Allen retired from his job, but it took another six months of tests — including an MRI, a muscle biopsy and a lumbar puncture — to determine that those isCAROL ALLEN HOLDS a roster for her husband Dave while waiting for the start of a sues were the first signs of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s recent Middlebury Union High School home football game. Allen, who was diagnosed disease. ALS is a progressive neurological with ALS two years ago, regularly attends Tiger football and Panther hockey games.

Independent photos/Trent Campbell disorder that causes muscle weakness, paralysis, and ultimately, respiratory failure. mouths because their arms are shaking badly. mont from Pittsfield, Mass., 35 years ago. AfALS DIAGNOSIS But with support from Carol and other fam- ter working as a truck driver for several years, There are a lot of “nos” for ALS. There is ily members, friends, and an extensive medi- he became a group leader in the Simmonds no known cause, no known cure, and no test cal support network, Allen is determined to Precision (now United Technology Corp.) for it. make the best of his time. shipping department, switching to the post “There’s no specific test for “I think that a lot of people, office after layoffs struck there.

ALS. They have to rule out all “A lot of people say, and this may sound funny to One of the things Allen had to learn and why me? But I’ve kept you, but, well, maybe not. But a that he advises others in his shoes to learn is the other things,” Carol said.

It’s not a welcome diagno- a positive attitude. lot of people say, why me? But not to hesitate to ask friends for help — now sis. According to many sourc- And I’ve been able to I’ve kept a positive attitude,” they will take turns mowing his lawn or does, those diagnosed with ALS inspire some people, he said. “And I’ve been able to ing odd jobs around the couple’s Ferrisburgh typically live another two to inspire some people, and I have ranch home. and I have a lot of five years while gradually losa lot of good friends. We go to “You know what I mean? It’s really tough ing their motor functions (see good friends.” an ALS walk, and we had like to do something like that. After all these years — David Allen related story). Lou Gehrig, the 51 people out at one walk to it’s tough to call someone and say I need this Yankee first baseman and most support us, and it’s the greatest done,” Allen said. famous ALS patient, survived two years after thing in the world. You know who your true Carol said if necessary she will remind her he was diagnosed in 1939. friends are when they come out and do things husband he always lent others a hand.

Dave Allen paraphrased a blog he had read: for you.”

“He’d be the first one there,” Carol said.

ALS patients eventually cannot scratch an It probably helps that Allen seems to have “That’s just the way he is.” itch, lift gallons of milk, or bring food to their made a lot of friends since he moved to Ver(See Services, Page 9)

Disease afflicts about 30,000 in United States, including many veterans; cure elusive

By ANDY KIRKALDY ADDISON COUNTY — Amyotrophic lateral sclerosis (ALS), also commonly known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that causes muscle weakness, paralysis, and ultimately, respiratory failure.

According to sources that include alifestoryfoundation.org and mayoclinic.com, ALS attacks certain cells in the brain and the spinal cord needed to keep muscles moving.

Currently, about 30,000 U.S. residents have been diagnosed with ALS, which has no known

cause or cure. Military veterans are twice as likely statistically to be diagnosed as members of the general population, regardless of whether they served in the U.S. or abroad. ALS is 20 percent more common in men than women, the average age of diagnosis is 55, and ALS patients typically live two to five years after their first signs of the disease.

The disease’s most famous victim, New York Yankee baseball player Lou Gehrig, contracted ALS at the age of 36 and died two years later.

Early signs and symptoms of ALS include: • Difficulty walking or doing normal daily

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• Weakness in legs, feet or ankles.

• Hand weakness or clumsiness.

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The disease frequently begins in the hands, feet or limbs, and then spreads to other parts of the body. As the disease advances, muscles become progressively weaker. This weakness eventually affects chewing, swallowing, speak-

ing and breathing.

Ultimately, ALS can lead to inability to move any part of the body or to speak or communicate with anything but the eyes and to reliance on a feeding tube for nutrition.

The senses — hearing, sight, smell, taste and touch — are not affected by ALS. In most cases, people with ALS do not experience difficulties in bowel, bladder or sexual function.

The Mayo Clinic notes, in particular, ALS does not affect “your thinking ability. It’s possible to remain actively involved with your family and friends.”

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PAGE 6 — Health

& Well-Being • Addison Independent, Monday, October 20, 2014

Tennis

(Continued from Page 3) said. “It has a ripple effect.”

Rhynard is a cancer survivor herself and is a caretaker for her husband, who also has struggled with cancer diagnoses. She lost both her mother and her father to the disease.

“I am someone who has dealt with cancer very closely for a long time, and I understand many of the support systems that we’re working to establish for cancer survivors and their networks at Kindred Connections and the VCSN,” Rhynard said.

She said that prior to her cancer diagnosis she had always considered herself a very healthy person.

But following her diagnosis she had to establish a new awareness of fitness and health in her life.

“Tennis is a great activity because it helps to reduce stress and build social connections as well as provide physical exercise,” she said. “It helps promote a balanced lifestyle, which is really important for anyone facing cancer.”

DEB KELLEY RETURNS a volley during a group lesson at Middlebury Indoor Tennis recently. MIT and SoJo Tennis will sponsor a fundraiser doubles tournament this weekend to benefit the Vermont Cancer Survivor Network.

The tournament will take place over three days, starting on Friday, Oct. 24, and finishing on Sunday, Oct. 26. The goal is to have four flights of eight teams in the tournament. All matches are doubles matches and are categorized by “A” and “B” levels for both women and men, according to USTA guidelines.

“Even for those not playing, it’s going to be a great event,” said Potter, who has organized food and beverage donations, door prizes and “Tennis is a great an address to tournament players and supporters from David Cranmer, the activity because current president and co-founder of the it helps to reduce Vermont Cancer Survivor Network, that stress and build will take place at 11 a.m. on Saturday. social connections If all goes as planned, with 32 teams as well as provide each paying an entry fee of $50 per team, the tournament should be able physical exercise. to raise about $1,600 for the VCSN in It helps promote a balanced lifestyle, entry fees alone.

The support for the upcoming VCSN which is really Tennis Tournament has been inspiring, important for said Potter. “Donations and support anyone facing from community business owners have been amazing, and it seems like players cancer.”

— Sherry Rhynard are looking forward to an opportunity to do what they love for a great cause.”

Potter and Collas said they hope that the tournament attracts the frequent players they know and recognize from MIT’s club, as well as those who may live a little further out of town or who aren’t seen as frequently on their courts. They hope that this will bring exposure not just to the cause but also to the sport of tennis and MIT as a community resource.

“But in the end, this is not about you or who you’re playing with or how great your game is that day,” Collas said. “The point is playing tennis for the benefit of the VCSN and that’s what we’re all most excited about for this day.”

For more information or to sign up for the tournament, contact Franz Collas at 802-388-3733, 802-349-7794, or sojotennis@ gmail.com; or go online to www.middleburytennis.com/15pdfs/ VCSN.pdf.

TENNIS INSTRUCTOR Franz Collas shares a laugh and a ball with a student during a recent group lesson at Middlebury Indoor Tennis. SoJo and MIT will sponsor an open doubles tournament this weekend that will raise money for an organization that supports cancer patients.

Independent photos/Trent Campbell

Health & Well-Being • Addison Independent, Monday, October 20, 2014 — PAGE 7

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PAGE 8 — Health

& Well-Being • Addison Independent, Monday, October 20, 2014

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(Continued from Page 4) The nature of her job means she can telecommute.

SERVICES HELPING “I’m just lucky they’ll let me work at home,” The Allens also discovered a wide array of services are available. To start with, Allen is a Carol said. “I work with people all over the Vietnam War veteran (veterans are 20 percent world, so it’s not a big deal that I’m not in an more likely to contract ALS), and they say office building.”

At the same time, they have to deal with inthe Veterans Administration has been helpful, funding his wheelchair and the van that helps creasing limitations.

“That’s one thing people don’t realize about them go out to restaurants and movies and attend Middlebury Union High School football this disease. A conversation like this is exand Middlebury College hockey games as well hausting for Dave. Going to a football game is exhausting,” Carol said. as make it to medical appointments.

“You’ve seen a lot of bad things about the STAYING UPBEAT At least on a recent sunny Tuesday mornVA on TV,” Allen said. “But they’re great peoing, Allen said he refuses to ple. They’re fantastic.” let either the diagnosis or the Fletcher Allen Health Care changes get him down. in Burlington provides an ALS “We have that touch “You just adapt yourself to Clinic that brings together all point every week with the medical caregivers Al- a nurse (from Addison the situation. Things will turn out good,” he said. “Like I feel len needs at one place and one County Home good. I feel really blessed that time — his neurologist, occupa- Health). They keep I am where I am right now and tional and physical therapists, a track of Dave’s vitals that I have good care. Everyspeech pathologist, a nutritionist, social worker, and his case and things in between thing’s been going along great, clinics.” so I can’t complain.” manager.

— Carol Allen Even the kindness of strang“Instead of him having mulers heartens him. tiple doctors’ appointments, “When I was a kid, I was brought up to when there’s one,” Carol said.

“They are the greatest bunch of people,” Al- I saw somebody in a wheelchair or somebody having a hard time to help them. I’ve been len added.

Carol Allen said the Fletcher Allen case amazed how many people will help me,” he manager and social worker have been ex- said. “It’s even the younger generation. It’s just amazed me.” tremely helpful.

Sometimes those who don’t know her hus“You have to have a case manager to help coordinate all these different services,” she band confuse his physical condition with lack of mental sharpness, and Carol Allen has adsaid.

A second case manager, from the Champlain vice for those who meet him or others in simiValley Agency on Aging, helps coordinate Al- lar situations.

“This is the hardest part about ALS, your len’s care in Addison County.

“She helped us find caregivers, like Kayla, brain is still perfect. It’s the physical aspect.

And people sometimes when they see you inwho is here right now,” Carol said.

Addison County Home Health also provides capacitated physically think that your brain is a weekly nursing visit to check in on Allen’s affected. So people will speak to him differently, like he is hard of hearing, condition. like he won’t understand,” she “We have that touch point “You just adapt said. “Just have a normal conevery week with a nurse,” versation. That’s what I would Carol said. “They keep track of yourself to the say.”

Dave’s vitals and things in be- situation. Things will Allen also emphasized he is tween clinics.” turn out good. Like I always willing to discuss his Back in Chittenden County, feel good. I feel really ailment. an organization called Jim’s blessed that I am “I would talk with anybody House in Williston offers an ALS support group that Carol where I am right now about it. I feel comfortable talking about it,” he said.

Allen said provides excellent and that I have good That is one reason they were help and a place for relatives of care. Everything’s happy ALS received so much ALS patients to stay. been going along publicity this past summer.

“I think that we’re fortunate great, so I can’t “People don’t know about it. with all that we have,” Carol complain.”

The Ice Bucket Challenge was said.

— David Allen the best thing ever to get the ADAPTING word out there,” Carol said.

Dave Allen said regardless of When those 51 friends attended the recent the level and quality of services, ALS patients must make their own peace with their diagno- ALS walk, Allen said he spoke afterward.

“I said I know I’ve inspired some of you sis — and with the progressive nature of the people. But I said you people inspire me a lot disease.

“I think a big word is adapt. It takes a lot of more by showing up for me. Because it really adapting, and it takes a lot of change in your touched me deep down inside,” he said. “And really when I said it, it made me kind of, you lifestyle,” he said.

For example, after his diagnosis, Allen was know, want to cry. Because these people, evfirst able to get around with walking sticks. erybody’s got good stuff to say, they pat you Then at a Middlebury hockey game in early on the shoulder. It really touches me a lot.”

A greater source of Allen’s inspiration and 2013, he fell. For another half a year, Allen used a walker. But in October 2013 during a upbeat outlook sat near his wheelchair.

“For me a lot of the support to do it starts trip to Maine another fall triggered another right there. She works all day and then her change.

“That’s when I started using this chair,” he day’s not done. When the caregivers leave, she’s still got to take care of me in the evening. said.

Carol Allen has also had to adapt, and for- She does a great job, fantastic. I couldn’t ask tunately a 23-year career at GE Healthcare in for better companion or a better person. And if South Burlington allowed her to make a major you were to talk to my friends, they would say the same thing,” Allen said. “It’s enjoyable, change.

“I worked fulltime out of the home. I was in and even though I’ve got a disease and I know an office, but last year I decided I needed to be someday it’s got to come to an end, she makes it what it is.” here, so David wasn’t alone,” Carol said.

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Health & Well-Being • Addison Independent, Monday, October 20, 2014 — PAGE 9

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PAGE 10 — Health

& Well-Being • Addison Independent, Monday, October 20, 2014

Advice on what to say to those dealing with cancer

Shy about asking, “What’s the etiquette for supporting my loved one, friend or colleague in their battle against cancer?” many people simply avoid the question altogether — and offer nothing.

“It’s OK to wonder, and it’s OK to ask. Be direct!” says Jane Schwartzberg, who has been battling stage 4 metastatic cancer for several years. She’s the co-author with Marcy Tolkoff Levy of “Naked Jane Bares All,” www.nakedjanebaresall.com, which shares her story with candor and humor.

Jane was a 31-year-old newlywed when she was first diagnosed with breast cancer. She underwent treatment and eventually was declared cancer free. She moved on with her life,

Irene Poole,

giving birth to two children • Embrace their big and launching a technol- “As terrible as having dream, even if it doesn’t ogy company. Then, when terminal cancer is, sound realistic. During a she was 42, the cancer re- there is that undeniable very low point, Schwartzturned. She’s now 45. berg was asked by a quality of embracing “I’m a fighter, and the friend: “If you could have support I’ve received from every moment, including anything, swinging for the my family and friends has asking your heroes fences, what would help given me an immeasurable out to lunch. Cancer you get out of this pit?” amount of strength, without brings out the boldness Without skipping a beat, which I don’t know what I in people, which may she answered, “I want to would do,” Schwartzberg take (comedian) Larry Daentail a dream vacation says. vid out to lunch.” As imWhat are some sugges- to Hawaii. Don’t be possible as it seemed, her tions for providing sup- afraid to embrace their friend encouraged her to port? She offers these: write to the co-creator of wishes.”

• Do it without any ex— Jane Schwartzberg “Seinfeld” — and he acpectations or requirements cepted. for a response. “I’m often “As terrible as havasked, ‘What can I do to help?’” she says. ing terminal cancer is, there is that undeni“What I’ve suggested: Be in my life at my able quality of embracing every moment, pace, let me take the lead; make your pres- including asking your heroes out to lunch,” ence, availability and support known, but do it Schwartzberg says. “Cancer brings out the without any expectations or requirements for a boldness in people, which may entail a dream response.” vacation to Hawaii. Don’t be afraid to em-

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• Don’t sugarcoat it. “If you want to really infuriate me, you’ll tell me that this whole mess is beshert, Yiddish for ‘meant to be’ — that it’s all part of a plan from a higher power,” she says. “Maybe terminal cancer is part of some crazy plan, but I promise you that these are the last things I want to hear from anyone.”

Don’t sugarcoat or try to put a positive spin on what’s going on — in fact, it’s more of a comfort to Jane when others acknowledge that her situation stinks and that she is looking at a life that’s far different from, and likely to be shorter than, anything she’d imagined.

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Health & Well-Being • Addison Independent, Monday, October 20, 2014 — PAGE 11

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PAGE 12 — Health

& Well-Being • Addison Independent, Monday, October 20, 2014

Take good care of yourself

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