Friday, June 28, 2013

Forced Intimacy: When Illness Makes Us Let Down Our Guards

With an invading disease come other invasions, of privacy and physical space: Holly Ladd on ALS and intimacy out of necessity                                                                           

My name is Holly Ladd, and I am a 58-year-old woman with ALS (“Lou Gehrig’s Disease”). I was diagnosed in August 2012, after five months of increasing difficulty walking. Ten months later, I live my life from a wheelchair, no longer able to walk, and I am quickly losing use of my arms and hands. My voice is soft and muffled, and will be useless in a few months.

In December 2012, I left my 30-year career in public health and international development, in which I traveled alone to Africa and South East Asia. Now, I can’t travel alone from my bedroom to the bathroom.

Having the support of Joan, my beloved partner of 23 years; my beautifully spirited son, Michael, whom I joyfully watched graduate from college this month; many close friends; as well as excellent medical care and a home health aide seven days a week, I am one of the “lucky” ALS patients. But like all of us with this devastating disease, I am frightened and furious. It has given me much to think about.

As each week passes, they bore through the rock-hard walls of my self-consciousness, shyness, embarrassment and grief to move in close enough to keep me clean and safe — and I fight them at every turn, mistaking pride for dignity.
Lately, I have been thinking about intimacy. Not sexual or romantic intimacy, but the full range of physical, emotional and — dare I say — spiritual intimacy. We undress in front of our sexual partners, our physicians and maybe strangers in a locker room, but most of us would not consider having someone else routinely remove our clothes. A few special friends may know some of our fears, our secrets and maybe our prayers.

But generally we guard these parts of ourselves well — some of us very well indeed — with what I like to think of as our personal sentries. These sentries are the tricks, diversions, dodges and distractions we use to keep the world at bay. I imagine mine dressed rather like the Swiss guys in striped pantaloons who guard the pope.

Among the many choices we have when suddenly sick is whether or not to fire our sentries. Don’t we need them to guard our vulnerable selves even more when we are ill? Isn’t this the time to circle wagons? And how do you know whom to let past the palace guards?

So far, I have told my sentries to stand down; I have yet to fire them. They are milling about in the corner in their purple and gold stripes, helmets off, with an occasional cigarette passing between them. I might be able to fire them someday, but for now they still keep a watchful eye and spring into action from time to time, like a dog energetically greeting the postal carrier. Even so, while they have been relaxing, greater intimacy has been happening — by choice and by necessity.

By necessity, there are a whole lot more people in my life now. Most notable are the four women who come at different times and frequencies to care for my daily physical needs. These people bathe me, brush my teeth, wipe me, feed me, get me in and out of bed, and dress and undress me. As each week passes, they bore through the rock-hard walls of my self-consciousness, shyness, embarrassment and grief to move in close enough to keep me clean and safe — and I fight them at every turn, mistaking pride for dignity.

Some of those who care for me have such a well-worn familiarity with this disease that they anticipate both my physical and spiritual needs before I can imagine going there. They prepare me, and they prepare the path in front of me.

There are medical providers who know the science and my body — how it is collapsing. Two or three have also seen some of how my heart has broken. And my psychologist helps sort out the feelings I have about impending death from those that were born in ancient losses. With a couple of these, I discuss both heart and health, and they will be trusted with making the final call.

I think about who can accompany me to appointments based not just on schedules and interests, but on who knows me well enough to speak for me as my voice fails — who knows my fears, as well as my comforts; who knows me well enough to persuade the sentries to let down their guard.
What sets these relationships apart is their inequality. They are one-way caring. No matter if I wished it otherwise they are not friends, and I do not share in the details of their lives. I do not question the authenticity of their caring, nor do I think them impervious to my not-so-subtle attempts to ensure that they like me. No, these intimate strangers are exactly as they need to be in order to be ready to care for what comes next. But with some I do wish we had met in a different way at a different time.
Lines blur, as friendships now include care-taking in addition to all the normal expectations I have of those inside the palace walls. Seeing a group of out-of-town pals once a month helps to mark the changes, and I noticed last weekend how dependent I was on them and how much more intimate physical care they had to do for me. I also noticed how much work it has become for me to actively remain in a conversation. Among friends, I have had to send the sentries out for coffee while membership in the “bare butt club” (those who take me to the bathroom) grows, and dinner conversation includes a discussion of the pros and cons of going on a ventilator. “Joshua fought the battle of Jericho, and the walls came a tumbling down.”

As things become more difficult, I know, I will need to let more people past my resting palace guards. It is a balance, and I hope I will still be able to decide how much to share, and with whom. Already, I think about who can accompany me to appointments based not just on schedules and interests, but on who knows me well enough to speak for me as my voice fails — who knows my fears, as well as my comforts; who knows me well enough to persuade the sentries to let down their guard.
Via 90.0 WBUR Boston's NPR Station

Thursday, June 27, 2013

ALS and Social Security Benefits

Guest blogger: Molly Clarke from Social Security Disability Help
326 A Street, Suite 1A

Boston, MA 02210

857.366.7629 – Direct

617.800.0089 – Office

ALS and Social Security Disability Benefits

Amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s disease, can significantly weaken the body. When individuals with ALS begin to experience severe symptoms like muscle cramps, uncontrollable twitching, difficulty speaking, and trouble breathing and swallowing, it is understandable that they may no longer be able to work and earn a living. The resulting loss of income and medical insurance can cause a significant financial burden.


Fortunately, the Social Security Administration (SSA) offers financial assistance in the form of Social Security Disability benefits to individuals with ALS who cannot work.  The following article will provide you with a brief overview of the Social Security Disability benefit program and will prepare you to begin the application process.


Social Security Disability Technical Requirements

To even be considered for Social Security Disability benefits, applicants must first meet the SSA’s definition of disability. This includes meeting the following criteria:


·         You cannot do the work you were once able to;

·         You cannot adjust to other types of work; and

·         Your condition must be expected to last at least one year or result in death.


The SSA governs two separate programs that offer Social Security Disability benefits—SSDI and SSI. Each of these programs has its own set of technical eligibility requirements that applicants must meet in addition to meeting the SSA’s definition of disability.


SSDI, or Social Security Disability Insurance, offers financial assistance to disabled workers. This program is funded by the income taxes that workers all over the country pay into the system. Eligibility for SSDI is based on an applicant’s work history. The SSA assigns a certain amount of “work credits” to each quarter that an individual works and pays taxes. To qualify, an applicant must have earned enough work credits throughout his career. Learn more about SSDI and work credits here:


The second program that offers disability benefits is called Supplemental Security Income (SSI). Eligibility for this program is based on an applicant’s financial standing rather than their work history. To qualify, applicants must fall under specific financial limitations and meet the SSA’s definition of disability. This program is ideal for disabled individuals who may not have the work credits to qualify for SSDI. Learn more about qualifying for SSI, here:


It is important to note that some applicants may qualify for both SSI and SSDI. Also remember that these programs do not take the place of health insurance. However, individuals who qualify for SSDI qualify for Medicare after a two year waiting period.  Individuals who qualify for SSI automatically qualify for Medicaid. For more information about Medicare and Medicaid, visit this page:


Compassionate Allowances Program

Typically, it can take months for an initial application to be processed. The SSA recognizes that individuals with severely disabling conditions cannot be expected to wait the standard processing times. For this reason, the SSA started the Compassionate Allowances Program. Through this program, applicants with serious disabilities can be approved in as little as ten days.


Fortunately, ALS does qualify for Compassionate Allowance processing. However, because there is not a definitive medical exam to determine whether or not an individual has ALS, it is imperative that you provide medical documentation to fully support your claim


This medical documentation should include a history of your symptoms and treatments, neurological exams and reports, as well as test results that rule out other possible conditions. You should also include a statement from your doctor describing your condition and how it affects your ability to work.


Please note that you do not have to fill out additional forms to qualify for the Compassionate Allowances program. The SSA will determine whether or not your condition qualifies and will expedite your claim accordingly.


Applying for Social Security Disability Assistance When Living With ALS

Once you decide to apply for Social Security Disability benefits, you can do so online at the SSA’s website or in person at your local Social Security office.  Along with the necessary medical documentation you should also have financial and work related records as well.


The Social Security Disability application process can be long and complicated. Often times, applicants find that their initial applications are denied. If your application is denied, do not panic. You are allowed to appeal this decision. Do not give up. Once you are awarded benefits, you can focus on your health rather than your financial difficulty.


For more information about Social Security Disability benefits, visit Social Security Disability Help or contact Molly Clarke at

For a Nahant family, life goes on with ALS

 Via Boston Globe:

   George Mazareas, his wife Cynthia Mazareas, and their daughter, Elni Mazareas in their living room.
Matthew J. Lee/Globe staff
George Mazareas, his wife Cynthia Mazareas, and their daughter, Elni Mazareas in their living room.

NAHANT — George and Cynthia Mazareas are not living the life they had pictured when they got married in Greece 15 years ago.

When they started building a home in Nahant in 2000 and Cynthia got pregnant, they were looking forward to all the possibilities of the future.

But in 2003, George, now 53, was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, and the couple’s life changed forever. By 2005 he had to start using a feeding tube. By 2006, he needed a ventilator to breathe.

Cynthia Mazareas, 49, said her husband’s illness has led them to redefine what they want out of life.
“For a while we probably felt like we were giving up on a lot of the things we had dreamt of and hoped for as a married couple and as parents,” she said. “I think now that we’ve sort of come to terms, it’s more like rewriting the story. It’s a different story than the one we had imagined, but that doesn’t mean it’s not a quality story.”
‘I think now that we’ve sort of come to terms, it’s more like rewriting the story. It’s a different story than the one we had imagined, but that doesn’t mean it’s not a quality story.’ Cynthia Mazareas
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Today, their home is mostly quiet, except for the hum of the machines that keep George alive. A former athlete who was active in community affairs, the Lynn native now sits paralyzed in a wheelchair, his movement limited to facial muscles. His daughter, Eleni, now 10, has never known his voice.

On Monday, the Mazareas family, joined by about a dozen friends, traveled to New York City to accept the Courage Award from Prize4Life , a nonprofit that works to find treatments and cures for the disease that took former governor Paul Cellucci ’s life earlier this month. There, Cynthia Mazareas delivered a speech on behalf of her husband, who spent weeks writing it when he was more capable of using a computer.

During the last decade, the Mazareases said, they have raised more than $1.5 million for the fight against ALS through events they were either involved with or inspired. However, Thomas Leavitt, Prize4Life chief development officer, said the Mazareas family earned the Courage Award not because of fund-raising, but because of their resilience, spirit of hope, and unwavering dedication to each other.

“The physical intimacy of their marriage would decline,” Leavitt said, “but they weren’t going to change their emotional intimacy or the relationship with their daughter, which was a big impetus to continue living the lives they’re living.”

Amyotrophic lateral sclerosis , also known as ALS, is a neurodegenerative disease that rapidly robs a person of the ability to initiate and control movement and eventually leads to paralysis. According to the ALS Association, this muscle atrophy leaves patients with an average life expectancy of two to five years. This year marks 10 years since George’s diagnosis.

Mazareas said that while she and her family would go on stage to accept Prize4Life’s honor, she shares it with everyone who has stuck by their side while George has progressively lost physical abilities.

“It’s very hard for some people to see that, and that’s where courage comes in,” she said. “I think our friends are as worthy of a courage award as we are. They’re not afraid to look into the face of ALS and deal with it.”

For George Mazareas, his participation in ALS charities like Prize4Life and The Angel Fund stems from a determination to help find treatments and cures.

Elni Mazareas took a picture of her dad with their family dog, Bailey.
Matthew J. Lee/Globe staff
Elni Mazareas took a picture of her dad with their family dog, Bailey.

“For me, it’s very emotional because I think of the PALS [people with ALS] that have gone before me and passed away — and I have known about 30 people — then I think about all the future ALS patients, and I feel a duty to do my part,” Mazareas communicated through his wife.

Since he started using a breathing tube, Mazareas cannot speak aloud. He communicates with his family with a numbers and letters system, a language Eleni learned as a Father’s Day present when she was 5.

To start, George mouths a number, 1 through 8, each indicating a specified series of letters, words, or numbers. The speaker starts reciting the series, waiting for George to blink, meaning they’ve reached the correct letter. They repeat the process until words and sentences are formed. Sometimes George looks away instead of blinking, a sign that a letter or word was miscommunicated, and they start over.

“George says that this is one of the best things I ever did for him, finding this communication device,” Cynthia said, adding that after rows one through five were established, George added a sixth (“who, what, when, where, how, why”), seventh, (“new word”), and eighth (numbers 0-10).

Despite the emotional challenge of seeing her husband in this condition and the patience required to communicate with him, Cynthia said he is still very much her partner in marriage and parenting.
“George is the big picture thinker, the visionary, and I’m more of the executor,” said Cynthia, an attorney. “He’s still my go-to person in life. George still does a lot of the big thinking in the house and gives me a lot of good advice and guidance and direction.”

For Eleni, her dad is the man who taught her about Marvel comics and Harry Potter, and like any other father and daughter, sometimes they butt heads.

“Never argue with him because you’re probably going to lose,” she said with a smile.

Cynthia said Eleni has picked up on her dad’s strength.'

“She’ll say, ‘The thing I’ve learned the most from my dad is you can get knocked down, but you can get back up again.’”

Wednesday, June 26, 2013

Update on Kingsbury Family's Struggle With ALS

via WABI Channel 5 News, Maine

by Joy Hollowell - June 24th 2013 08:26pm -
Trapped in your own body.

That's how Jim Kingsbury describes his battle with ALS.

TV-5 has been following the Kingsbury family for more than four years, tracking their struggles as well as their successes.

Joy Hollowell has the latest update.
7-year old Jack Kingsbury enjoys spending time with his Dad. He was just a baby when Jim Kingsbury was diagnosed with Lou Gehrig's disease back in 2007. For the first few years, Lisa cared for Jim at home. A round the clock job that included parenting Jack as well as working a full-time job.

"He definitely got beyond my scope," says Lisa Kingsbury. "I felt like it was getting dangerous to keep him home."

About two years ago, the Kingsburys made the difficult choice of placing Jim in a nursing home in Biddeford. It is one of just a few facilities in the state that can adequately care for him, but the nearly three hour commute from Dover-Foxcroft is tough on Lisa and Jack.

"It's hard not being involved in his day to day care," admits Lisa. "That was a huge adjustment."

The disease has robbed Jim of his ability to move and to speak. But thanks to technology, he can still talk and interact.

"Oh, he's on Facebook all day," says Lisa with a smile.

Jim uses a DynaVox. By blinking or even just hovering his eyes over the keyboard, he can type out his thoughts, which a computer-generated voice then relays.

"Monday is date night," says Lisa. "Actually, it's been date night every night, lately," she adds with a smile. The two communicate via Facebook. "After Jack goes to bed, we sit and watch television. Mondays, it's Bones, and Thursdays, it's Master Chef."

ALS is a fatal disease and Jim has managed to surpass the predicted longevity of two to five years. But now, both he and Lisa are preparing for the day Jim loses his ability to move his eyes.

"Without being able to communicate, it would be hard to imagine prolonging this," says Jim Kingsbury.

"We have a plan,"says Lisa in a soft voice.

"We have tried to stay ahead of the hard decisions," adds Jim.

"We've said our goodbyes because we know in all likelihood, I probably won't be here when it happens," says Lisa, pausing a moment to hold back tears. "We've been lucky. Most people don't get the opportunity to say good-bye. We've had that conversation."

Since the start of our series, Jim has been asked how he copes with the cards dealt. Taking it one day at a time has always been his motto, and still is today.

"I still enjoy life," says Jim.

"We're enjoying the time we have together," adds Lisa.
Thanks to Skype, Jim was able to see his oldest son graduate from college and get married. A camera at the reception enabled Jim to watch the cake cutting and first dance.

Jim says he allows TV-5 to continue showing such a personal aspect of his life because he wants more people to understand what Lou Gehrig's disease is all about.

He welcomes anyone to contact him on Facebook. Just search under James Kingsbury.