Wednesday, December 14, 2011

Book Review, Sunday, Dec. 11 - BaytownSun.com: Lifestyle

What a nice surprise to see my book reviewed in a local paper in southeast Texas! I guess word does get around! :) The review is short and sweet, but if it helps one person find the resource they need, then it's all for the better!

Book Review, Sunday, Dec. 11 - BaytownSun.com: Lifestyle: Where Did Mommy’s Superpowers Go?

Saturday, December 10, 2011

Thank you, Brandeis Magazine!

Just opened up the Fall issue of Brandeis Magazine, where I went to college (yes, I stayed close to home--and hope Jason decides to do the same!).  Don't we all love to get these and check our graduating year to see what everyone's been up to?  Where do the years go--I can't believe it's already been 20 years!  Anyway, I was thrilled to see the nice mention of my book and also a great synopsis in the class notes.  I wanted to share it with you--check it out here.

Monday, December 5, 2011

The Gifts Money Can't Buy

Everywhere you look, especially at this time of year, there are countless opportunities to give back and support those less fortunate.  Whether collecting money, goods, or food, it’s uplifting to see all of the creative and innovative ways people are coming together and supporting their communities. 
But in addition to all of these generous programs, there is an often forgotten yet critical need for donations which can save a life.  The gift of blood, bone marrow or organs can mean the difference between life and death for a seriously ill person, and unlike food, toys, or coats, cannot be bought at any price.  We tend to forget how desperate the need is for these donations, but also how easy they are to give.  Perhaps 2012 will be the year you decide to give the gift of:

Blood:  My new issue of Shape Magazine arrived yesterday, and as I was reading it I was shocked to learn on page 32 that only 3 percent of Americans donate blood each year.  That leaves 97% of our population who do not.  Now granted, a portion of those people cannot give even if they wanted to due to health issues (like me), but what if more healthy people would donate blood?  I required a bag of platelets during each bone marrow transplant, and needed four bags of blood after each hip replacement.  That’s 10 bags of blood products just for me alone!  You don’t have to watch Gray’s Anatomy to know that blood is necessary for transfusions and major surgeries, and there is a huge shortage.  Often a patient can have their own blood collected prior to a big surgery, but if you’ve been sick or have low blood pressure, they won’t allow you to (this is what happened to me).  In the amount of time it takes to linger over a latte at Starbucks, you can donate blood at your nearest hospital or at a scheduled drive.  It’s as easy as a simple IV, and you can relax with a book or work on your iPad.  Afterward, you can help yourself to some tasty snacks.  For more info on how to become a donor, visit www.redcross.org

Organs:  Becoming an organ donor is a simple, administrative process and has the potential to give someone a second chance at life.    Currently, over 112,000 people in this country are waiting to receive a life-saving organ, and the need for donors grows every day.   According to organdonor.gov, a single organ donor can save up to eight lives!  Sadly, 18 people die every day waiting for an organ.  Registering as a donor is simple, and all the information you need is available at www.organdonor.gov.  The next time you find yourself at the RMV, you can register on the spot.  Also, don’t forget to make your family aware of your wishes, and indicate your decision on any legal documents, such as your will or Health Proxy.

Bone marrow:  Fortunately, I was able to collect enough of my own stem cells for both of my transplants, but not every patient is able to be an autologous (their own) donor.  Like a kidney, bone marrow can be donated from a living donor.  For more information and to register as a donor, simply visit http://www.dkmsamericas.org/; a simple cheek swab is all that’s necessary.  DKMS Americas is the world’s largest bone marrow donor center, and does not require any payment to register.

Good Search:  I recently discovered this wonderful search engine which donates money to the charitable organization of your choice each and every time you search online!  It’s as simple as Google, but your search is actually benefiting a deserving organization!  Simply visit http://www.goodsearch.com/ and select the non-profit you wish to support (you can only support one organization at a time, but you can change it before any search).  From the website, you can also use GoodShop and GoodDining, and help raise funds while you shop online or make restaurant reservations.  From the homepage, you can download the GoodSearch Toolbar to display across your screen instead of Google, so every search automatically benefits the charity of your choice.  BRILLIANT!!!

Where Did Mommy’s Superpowers Go?:  My book is often purchased by newly diagnosed patients who have small children, or as gifts from friends and family members for someone going through a health crisis.  But don’t forget this book is a useful resource for a school or town library, a school nurse or guidance department, teachers, pediatricians, hospital social work and oncology departments, support groups, or child therapists.  Support your independent bookstores and shop local by picking up a copy at Willow Books and CafĂ© in Acton, or The Paper Store in Acton, Maynard, or Sudbury.  If you prefer to shop online, you can order a copy at www.tinyurl.com/buymommypower.  Of course, the book is available at Amazon and BarnesandNoble.com as well.

Helping a Brain-Injured Person - Part Two

Last month, Dr. Kerpelman described exactly what a traumatic brain injury is (TBI), the signs and symptoms to look out for, and what to do if you suspect an injury has occurred.  Explaining to children that a loved one may have "pieces missing" after hurting their head is a simple way to convey the changes in memory, language and behavior they may find confusing.  In this month's article, you'll learn the challenges a brain-injured person faces, how you and young children can support the patient's recovery, and most importantly, how to help children empathize and interact appropriately and compassionately with anyone we may encounter with a brain injury or other disability.
 
By Larry C. Kerpelman, author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011)
In Part One last month, I described how my wife sustained a moderately severe traumatic brain injury after falling while jogging, and I described the many symptoms that can result from such an injury to so sensitive (and important) an organ of the body.  It took three emergency room visits, two hospitalizations, one brain surgery, and months of rehabilitation for her to regain the pieces missing from her speech, thought, reading, confidence, and zest for life.  In Part Two below, I discuss some of the things you can do to help a brain-injured person’s rehabilitation.  Even young children can play an important role in the healing and recovery process.
1.)    Support the person in their rehabilitation, whether it’s through reminding that person to do the exercises prescribed by the medical and rehabilitation therapists, helping with those exercises, or understanding and accommodating the sufferer's limitations.  Kids may enjoy being a “personal trainer”, doing the exercises alongside their relative, and coaching them along.
2.)    You can expect that a brain injury may cause disruption or even disappearance of previously normal physical, cognitive, and emotional functions.  Ensure that daily activities can be carried out safely.  A brain-injured person may have balance and strength issues; the worst thing that can happen to a person during the first year after the original injury would be to suffer another fall or bump that injures her head.  Children can also take an active role caring for their relative…they can play “Police Officer”, reminding the person not to forget their cane or walker.  Or they might want to be a “Bodyguard”, and escort their relative by the hand to their destination.  Until the injured person’s physical strength, balance, and coordination is substantially restored, a family member or friend should be near her when she walks or goes up and down the stairs in case she loses her balance.  It’s especially important to follow this practice when outside the house because outside surfaces are a lot more uneven than those in a house.  The brain-injured person should not be hurried to resume any normal activity until she feels ready to do it and do it safely, and even then, a friend or loved one should monitor the activity to ensure that it is indeed being done safely before she is left on her own to do it independently.
3.)    Be patient and understanding.  In the cognitive area, the person’s memory, reading, problem-solving, and logical sequencing of activities may be impaired.  If a person with a TBI cannot remember a person’s name or the name of a place, encourage her to describe the person or her associations with the place.  Using different thought processes may help her to recover the name.  The speech and thought processes of someone with a TBI may be slower and punctuated by pauses as she searches for the next words.  If that person’s speech becomes hesitant because he or she cannot get a word out she is trying to say, you should resist the natural urge to supply the word or finish her sentence for her.  Ask your kids to do the same, although recognize that it will be harder for them not to prompt the person than it will be for you (and it is hard).  Only by working through the cognitive processes to find the word or words and say them will the brain-injured person gain practice in being able to recall or recognize words.
4.)    Remember that the injured person may feel more fragile and vulnerable.  A person who is recovering from a brain injury may very well appear physically to be just the same as before the injury, but there may be incredible changes within the person emotionally.  He or she may think, feel, or act differently than before.  Children may pick up on these new behaviors and become confused.  You can do your part by recognizing this new reality and working with the injured person to accommodate to, and possibly gradually improve, the new emotional state.  Emphasize to children that this is still the same relative they know and love, and the changes they see are part of the injury.  Some changes may resolve over time, and some may not, which might be difficult for children to understand.  Counsel children to be patient and understanding and, even more importantly, model the behavior for them.  Kids do what you do, more often than what you say.   
5.)    Treat him or her with respect, and be ready to help that person.  Above all else, remember that a person with a brain injury is a person first.  Also remember that no two brain injuries are exactly the same. The effects of a brain injury are complex and vary greatly from individual to individual. Those effects will be different depending on the injury’s cause, extent, location in the brain, and severity.  Consequently, I can only give a partial picture here of what to expect and how to interact with a person who has suffered a brain injury.  For more information on other support mechanisms, go to the excellent website of Brainline, www.brainline.org. 


Would you like to use this article for your own website or newsletter?  No problem!  But here's what you must include: 
“Larry C. Kerpelman is author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011). Dr. Kerpelman is a psychologist and award-winning health care communicator who never would have imagined his writing would be inspired by experiences in his own family.  When his wife suffered a brain injury from a freak accident, the journey toward recovery took his family through the maze of a less-than-perfect healthcare system.  The book inspired by this experience provides a moving story of the endurance of the human spirit, combined with insights about brain injury and recovery and pointed questions about how our health care system functions. For more book details, please visit him on www.facebook.com/LarryCKerpelman. If you or someone you know would like to buy Pieces Missing, you may order it from www.LCKerpelman.com, www.Amazon.com, www.BarnesandNoble.com, or your local bookseller.”
Dr. Kerpelman will be speaking at Sargent Memorial Library in Boxborough, MA on January 24, 2012 at 7pm (snow date January 31).

Wednesday, November 23, 2011

Feeling Thankful When Things Suck

Sure, I'm looking forward to Thanksgiving this year.  Last January, in lieu of New Year's Resolutions, I dubbed 2011 "The Year of Awesome".  Finally, a year that didn't involve rehab/needles/surgery/medication/feeling like a burden.  And it truly has been an amazing year; my book came out in March, we had a wonderful family trip in May to Disney World, we got to enjoy a fun but busy summer, Steve loves working for himself, and so far it's been a terrific school year for Jason.  There were countless special moments over the past 11 months, and it's shaping up to be a memorable holiday season.

However, I know this has not been an awesome year for lots of people.  Among those close to me, I have a long-time friend who has battled breast cancer, and another close friend suffering from serious immune deficiencies.  The children of another dear friend are struggling with anxiety issues, and a new friend has just started a 6-month chemotherapy regimen.  Yet another friend is coping with some lingering, bothersome after-effects of a stem cell transplant, and still another is caring for both of her ill parents in her home.  And these are just a few of my closest friends; there are countless others I feel a deep connection to through the amyloidosis support groups, both on- and off-line.  I can see from the emails flying back and forth that many have just been diagnosed, or have a spouse or loved one who has the disease.  Many are just beginning their treatment; various chemotherapy protocols or a full-on bone marrow transplant.  Dealing with fear, concern and ill health, it can seem impossible to feel thankful at this time of year.

Having all my own crap behind me doesn't make it any easier for me to relish a stress-free long weekend with my family, skip while doing my holiday shopping, or sing along to holiday music as I cook and wrap gifts either.  I can't stop wondering what I can possibly do for these people so dear to me and close to my heart.  How can I help?  Sure, I can deliver a meal, spend an afternoon, lend out some relaxation tapes or share tips that worked for me while I was going through a similar challenge.  But I wish I could just wave a magic wand and "make it all better". 

The one strategy that keeps coming to mind over and over again is to be thankful for what IS working; to feel gratitude for what IS going right.  At my lowest points, I would try and shake myself out of a slump and remind myself of everything I appreciated:  the best doctors, an effective treatment, generous family and friends, health insurance.  On a lighter note, but no less important:  extra time to read some great books,
a husband who knew how to turn on the oven/vacuum/iron, a kid who was willing to help a bit more around the house for a reasonable allowance.  It took practice, but eventually I developed a habit of "changing the channel" from gloom and doom to the glass being half full, at least for a moment.  No sunshine and rainbows, but over time the cumulative effect of shifting my focus from negative to slightly more positive gradually helped me believe that I did in fact have so much to be thankful for.  And there is scientific proof that the placebo effect can have a measurable impact on physical health.  Just yesterday, I opened my new issue of Women's Health to see an article on the topic (check out the December issue, p. 128).  If believing a "fake" pill or substance can improve one's symptoms, then what are the possibilities when one truly believes that real medical treatment will be successful?

I wish I could rent out my husband to lighten up doctor visits.  Not even the most stoic patient would be able to keep a straight face while Steve inflated surgical gloves, impersonated a naughty nurse, or made up his own medical vocabulary (don't try and find the term "schnarfalate" in the Webster's Dictionary).  When so much seemed so very unfunny, finding a little bit of humor at unexpected times was a welcome relief.  There's been a lot of research showing that laughter has a therapeutic effect in lowering stress hormones, which in turn has health benefits.  Sometimes I needed something a bit more potent than Steve, and that's when I'd turn to Netflix for "The Hangover", "Harold & Kumar" or "Knocked Up" for some laughs!

Back to my special friends facing their own personal challenges...thankfully my friend's breast cancer treatment was a success, she's feeling great, the prognosis is good, and I'm thankful that every now and then she and her family come into town for a visit.  I am grateful that a monthly treatment exists for my friend's immune condition, and so glad that I live close enough to be able to spend the afternoon with her the following day.  I'm thankful for the team of professionals available to my friend's children, and am confident that they will flourish.  I'm so glad that my new friend's oncologist is optimistic and reassuring about the treatability of her condition...I don't think doctors say "You're going to be fine!" if they didn't believe it.  I know my other friend is in good hands post-transplant, and while it may take longer than she'd like to fully recover, I'm grateful she is improving every day.  I'm so thankful that my friend's husband is incredibly supportive of her and fully involved in caring for her parents, and I'm glad that with the help of other family members she is able to take frequent breaks to recharge.  Whenever I see an email from a new member of the amyloidosis support group introducing themselves, or announcing the recent diagnosis of a spouse or family member, of course I wish they hadn't received this news.  But I am also thankful that they were successfully diagnosed; I'm grateful that someone along the way knew what to look for and requested the proper tests.  I'm glad that somehow they were referred to the group for information, support, and guidance, and also thankful for my own experience which allows me to be helpful.  I'm happy that they can now receive answers to their questions, and the treatment they need.

The collective feeling of thankfulness throughout the country in the course of a single day is what makes Thanksgiving so meaningful.  It's a designated day on the calendar in which we can teach our children to appreciate the food on the table, the roof over their heads, the toys that they own, the freedom that they enjoy.  But what could be more powerful than teaching them that there is always something to be thankful for, all year round, even in the most challenging of circumstances?  What if we were able to find something to appreciate every day of the year?  What if we not only expressed our thankfulness over one November dinner, but at every meal, in good times and in "not-so-great" times?  Once we've mastered an "attitude of gratitude", why not pass it down to the next generation?

Monday, November 14, 2011

Mommy's Superpowers Go...to Charleston, S.C.!

I received a wonderful surprise in my inbox today via Google Alerts:  Terri McDougal, a librarian in Kanawha County, is well aware that in addition to all the kids looking for the next Harry Potter, Diary of a Wimpy Kid and Captain Underpants, there are plenty of children coping with some very difficult life circumstances.  Specifically, Ms. McDougal recommended my book, Where Did Mommy's Superpowers Go? for her patrons facing a serious medical crisis, and looking for a positive resource to communicate this challenge to their children.  I have never met Ms. McDougal and have no idea how my book landed in her hands, but I am so appreciative and grateful for her support of the book!  Not only does she recommend the book to children coping with a seriously ill parent or family member, but spoke specifically to the fact that my book is not specific to any particular disease, so can be helpful to any family going through any type of health crisis.  To read the full article, please click right here:  Library Offers Unconventional Kids' Books


Now I'm going to try and send her a thank-you note! :)

Friday, November 11, 2011

Helping a Brain-Injured Person - Part One

About a month ago I was at our local coffee shop ordering a latte when I noticed a book displayed on the counter.  Pieces Missing: A Family's Journey of Recovery from Traumatic Brain Injury was written by Larry C. Kerpelman, Ph.D., a local author who was a regular customer at the Boston Bean House. I liked that Dr. Kerpelman was also a fellow independently-published author like me, and read that he and his wife, Joanie, lived just minutes away in Acton, my home-town. But what really grabbed my attention was the subject-the story of his wife's traumatic brain-injury and how their family coped with this unexpected crisis. I immediately went home and sent Dr. Kerpelman an email introducing myself, describing the parallels in our stories, and inviting him to coffee. To my delight, he accepted my invitation, and I had the opportunity to meet both him and his wife Joanie, read his book, and hear him speak at a recent book-signing.

I could not put this book down...expertly and articulately written, this memoir reads like a gripping, suspenseful novel. Having been through my own significant health crisis, I could easily identify with Joanie's struggle to turn her frustration and disappointment into positive energy more conducive to her recovery, and was inspired by her determination and tenacity. Pieces Missing is not only the story of a family coming together in the midst of a crisis, but a touching account of a spouse being unexpectedly thrown into the emotional role of caregiver and patient advocate.  Dr. Kerpelman also shines a much-needed light on both sides of our health care system: the selfless, committed and most devoted medical professionals who heal and care for us, and the complicated, corporate infrastructure which often interferes. Most of all, this book is a tender love letter from the author to his wife, a true depiction of the wedding vows "...for better or for worse, in sickness and in health..."; a must-read!

After reading Pieces Missing, I thought of how challenging it must be for young children to be coping with a brain-injured parent or relative. In addition to those who suffer falls, auto or other accidents, there must be countless troops returning home from duty in Iraq and Afghanistan with similar injuries. I invited Dr. Kerpelman to write an article for this newsletter, and I was thrilled when he accepted.  This is Part I of a two-part article:



By Larry C. Kerpelman, author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011)

On a beautiful December day, as my wife and I were returning from our daily walk to our favorite coffee house, she got tangled in her shoelaces and pitched forward onto the asphalt roadway and lay there scratched, bruised, and bleeding. I took her to the emergency room where we were told that she had suffered a subdural hematoma, a traumatic brain injury (TBI).  With that, she became one of 1.7 million Americans each year who sustain a TBI – that’s one every 18-1/2 seconds. Although I had a passing familiarity with brain injury as part of my professional education, over  the course of three emergency room visits, two hospitalizations, and one brain surgery, I became much more acquainted with brain injury than I ever  expected to be.  The book I wrote about her injury and rehabilitation tells the story of how our marriage and family persevered and survived the biggest crisis of our lives and how the human spirit and love helped our family overcome this major health challenge.  
The National Institute of Neurological Disorders and Stroke defines a traumatic brain injury as one where damage to the brain results from a sudden physical assault on the head. That attack to the head may result in either a closed head injury (such as occurred with actress Natasha Richardson in her fatal skiing accident in 2009) or a penetrating head injury (such as occurred from the gunshot wound suffered in 2011 by Congresswoman Gabrielle Giffords). The NINDS further categorizes the damage to the brain as being either focal, that is, confined to one area of the brain, or diffuse, that is, involving more than one area of the brain. My wife’s injury was a focal, closed head TBI.
A traumatic brain injury can cause all kinds of problems—some temporary, some permanent—due to not only the broken blood vessels and accumulation of fluid in and around the brain the injury has caused, but also the damage to the brain’s neurons. Among these problems are head pain, confusion, lethargy, nausea, sleep disturbances, impaired attention, memory loss, speech and hearing deficits, emotional and behavioral problems, and seizures. Having incurred a moderately severe TBI, over the next several months Joanie experienced all of these problems except seizures, which were averted through the use of anti-seizure medication.  Injuries on the left side of the brain, such as Joanie suffered,  can impair a person’s understanding of language, speaking, verbal memory, logic, sequencing of activities and thought, and control over right-sided body movements. Those on the right side of the brain may cause impairment of vision and spatial sense, visual memory deficits, altered creativity and music perception, loss of “big picture” type of thinking, and decreased control over left-sided body movements. Diffuse brain injuries – those that are scattered throughout both sides of the brain -- can lead to slower thinking, confusion, difficulties in attention and concentration, fatigue, and impaired thinking in all areas. At more severe levels, a TBI may cause a person to lapse into a coma, a vegetative state, or even death. 
So what should you do when you encounter a person who may have suffered a head injury.  If he or she is unconscious, try not to move him or her – that may cause more damage.  Call an ambulance, as the EMTs are equipped to handle someone with a head injury, and the emergency room personnel can diagnose what the injury might be.  If the person is conscious and talking, take him or her immediately to a physician’s office or an emergency room so that they can render advice and a diagnosis.  Do not ignore the problem or have the person “walk it off,” as an undiagnosed brain injury can cause worse problems down the road if not treated.  Once a person is released from treatment or hospitalization for a TBI, he or she is unlikely to be back to their “normal” self without some type of further rehabilitation to restore the “pieces missing” that resulted from the initial assault to the brain tissue.
In the next installment, I will review some of the things you can do to help a brain-injured person’s rehabilitation.

Would you like to use this article for your own website or newsletter?  No problem!  But here's what you must include: 
“Larry C. Kerpelman is author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011). Dr. Kerpelman is a psychologist and award-winning health care communicator who never would have imagined his work would be inspired by experiences in his own family.  When his wife suffered a brain injury from a freak accident, the journey toward recovery took his family through the maze of a less-than-perfect healthcare system.  The book inspired by this experience provides a moving story of the endurance of the human spirit, combined with insights about brain injury and recovery and pointed questions about how our health care system functions. For more book details, please visit him on www.facebook.com/LarryCKerpelman. If you or someone you know would like to buy Pieces Missing, you may order it from www.LCKerpelman.com , www.Amazon.com, www.BarnesandNoble.com, or your local bookseller.”
Dr. Kerpelman will be speaking at Sargent Memorial Library in Boxborough, MA on January 24, 2012 at 7pm.

 

Fall Happenings

What a gorgeous fall we've been having so far! Except for the recent nor'easter, loss of power, downed tree limbs and rescheduled Halloween festivities, it's hard not to feel energized by the crisp temperatures, bright sunshine and colorful leaves (not to mention an extra hour of sleep recently!). Plus, the Macoun apples are out, our favorite!



While I do require a bit more coffee to get through the dark afternoons, it's a whole lot easier to get up with a bit of light shining through the window in the morning! That caffeine craving is so strong, in fact, I decided to turn my son into my very own Super Grande Venti Turbo Latte:



And he was quite delicious...here's a little optical illusion!



My dear friend Kim Casto, whom I've known for over 13 years, is not only a super-highly trained Pilates guru, successful business owner, and devoted mom, but a generous supporter of her community who not only gives back, but makes it so fun people are lining up to join her! Her annual Pilates for Pink Fundraiser, held at her Pilates studio Bodylines, was a great success, and I was thrilled to be a part of it.


Just last week I was in Dallas, TX to see my friend Ali Brown in action!  I was there to attend Shine, an inspirational conference for women entrepreneurs created by Ali.  This was Ali's third event, and the first time I was able to experience the incredible energy of several hundred driven women focused on achieving success and reaching their business, family, and personal goals--all there for HER!  One of the highlights was meeting Nancy Traversy, the founder of Barefoot Books.  I was surprised to learn that Nancy lives about 15 minutes from me!  I introduced myself and gave her a copy of my book for her to show her editors (keep your fingers and toes crossed!).  But the real show stopper was Ali herself, who led most of the coaching sessions during the 3-day conference. 

 
For the past seven months, this blog and my monthly e-newsletter have been useful resources for families facing any significant health crisis, regardless of diagnosis. My goal was to share articles, tips, links, and other helpful information with anyone dealing with this challenge in the presence of young children, grandchildren, nieces or nephews. In this month's issue (and in the following blog post), I'm excited to welcome my very first guest writer, Larry C. Kerpelman, Ph.D., author of Pieces Missing: A Family's Journey of Recovery from Traumatic Brain Injury. 



In the first of his two articles, you'll learn what a traumatic brain injury is, what its signs and symptoms are, and how to help someone with this critical injury. Not only is this information helpful to those children coping with a brain-injured parent at home, but also for all of us who wish to find the right words to explain to our children how to empathize and interact appropriately and compassionately with anyone we may encounter with a brain injury or other disability. 

This article is also timely as it is Veteran's Day, a day when we must pause and acknowledge those who have voluntarily left their homes and families in order to protect our country.  We won't see another 11-11-11 in our lifetime, so it is a particularly significant day of remembrance and gratitude.  Let's hope that this is the year in which all our troops can finally come home for good.

Tuesday, October 11, 2011

From "Jonnie" to Jeans: Getting Back in Shape After A Medical Setback

Remember the movie “Groundhog Day” with Bill Murray?  Every day he’d wake up, and he’d be in exactly the same place he’d been the day before.  After several days of realizing his life wasn’t moving forward, he started to remember how the day was going to play out, which people he’d bump into and what events would take place.  Each day he’d find himself stuck in the same situation as the day prior, but once he knew what to expect, he’d choose how to behave and react differently, often with hilarious consequences.

This is how I felt over the course of five years as I recovered from one health crisis, just to be hit with another.  In 2006, I broke my leg.  Up until that point I had been working hard for three years after Jason was born to get rid of the baby weight, and had finally reached my goal.  I enjoyed running a few miles on the treadmill several times per week when suddenly I found myself laid up in a cast for about 12 weeks.   Once I was able to start physical therapy, I discovered that I had completely lost my former levels of strength, stamina and muscle tone (don’t even get me started on what my leg looked like compared to the other one when the cast came off).  Not only did I have to regain the function, balance, strength and flexibility in my injured leg, but I had to build up my cardiovascular fitness and lower body strength from the very beginning.

I was surprised at how quickly it all came back.  I approached my physical therapy with the same commitment and focus I used to shed the pregnancy pounds, and did the exercises religiously.  In about three months’ time I was able to accompany Steve on a business trip to London and Paris.  We brought Jason with us, and I easily walked everywhere with him and a stroller in tow during that two week excursion, glad that I had been so consistent with my rehab.


Less than six months later, I was diagnosed with amyloidosis, and told I’d need high-dose chemotherapy followed by a bone marrow transplant.  I knew the aggressive treatment would bring my current workout routine to an abrupt halt for four to eight weeks, which would really set me back, and I would definitely need to ease back into exercise gradually over the course of several months afterward.  During the treatment, I was even more sedentary than I’d been with my broken leg, but now in addition to muscle atrophy and a significant decline in my cardiovascular fitness, the chemo had wiped out all of my blood cells, including red cells (which carry oxygen to your body), leaving me breathless just after climbing a dozen stairs.  My bone marrow was busy producing a whole new immune system, which required what little energy I did have.  Not only were my muscles out of shape, but I was profoundly fatigued from the toll the treatment had taken on my body.  I could accept the weakness and lack of energy, but the medications I continued to take exacerbated the fluid retention and weight gain caused by the amyloidosis, making me feel even more uncomfortable and self-conscious about my heavier figure. 

Nonetheless, as soon as I was cleared by my doctors to work out at the gym, I signed up for a few sessions with a personal trainer, since I was a bit hesitant to exercise on my own.  I scheduled a Fitness Assessment, which confirmed that I had lost a significant amount of strength, flexibility, endurance, stamina and muscle.  I wasn’t thrilled with this news, but had a starting point and was able to track my progress.

A little more than six months later, I was feeling stronger, firmer and more energetic.  I no longer needed a trainer to supervise me, and I was working out almost as often as before I’d had chemo.  A second Fitness Assessment showed that I had made measurable improvements across the board, and I was looking forward to setting some new goals.  My enthusiasm was crushed when I found out I would need to have a second bone marrow transplant, repeating the entire protocol a second time.  Another huge wallop of chemo, wiping out the new immune system my body had worked so hard to build, would bring me right back to Square One.  I’d have to start from scratch all over again. 

I had my second stem cell transplant in June, and returned home within four weeks with the same weakness, fatigue and extra pounds of fluid caused by the medication.  The yo-yoing back and forth was starting to wear on me, and my mood would take a nosedive whenever my clothes didn’t fit.  For the fourth time since Jason was born, I went from running on the treadmill to walking.  I traded the 15 lb. dumbbells for three pounders, and switched from Spinning to yoga.  I listened to my body; some days I made it to the gym, and some days I had to recover.  I did what I could and never pushed myself beyond what I could do comfortably.  By the fall I was back in Cardio Kickboxing, proud of the quicker recovery I seemed to have had this time around.

Convinced my medical issues were history, I was excited to put the past behind me and focus on the future as a healthy, fit, active mom to Jason, who had just turned five.  He was now in kindergarten and had just begun taking Taekwondo classes.  We both thought it was pretty cool that I was familiar with some of the kicks and punches he was learning, and Jason was quite impressed when I was able to show him a roundhouse kick.

Shortly after my martial arts performance, I began to feel pain in both of my hips.  I figured I had pulled a hip flexor showing off to Jason—but *both* of them?!  I took it easy on the kickboxing and running and kept my workouts low impact, but over the course of the next couple of months, the pain seemed to grow worse, and more intense as the day wore on, to the point where it would be difficult for me to climb the stairs at night.
Having had so much chemotherapy over the past year, combined with the fact that it had put my body into menopause, I assumed that perhaps the toxicity of the treatment had weakened my joints or thinned my bones; perhaps this was early arthritis of some kind.  It didn’t seem too much of a stretch that if my body had been through the wringer, maybe it was aging at some accelerated rate.

I headed to the doctor, who scheduled an X-ray.  Convinced this was a cartilage or soft tissue problem rather than a bone condition, I asked for an MRI.  She obliged me and ran both tests shortly before Christmas, informing me that I should receive the results about a week later.

On the afternoon of New Year’s Eve, I was driving white-knuckled through an afternoon blizzard.  The snow was coming down heavy, the roads were getting slippery, visibility was getting worse, and Jason was with me in his car seat.  When my cell phone rang, I could see it was my doctor, and not wanting to miss the call, I answered it.  My test results were in.  I told him I couldn’t talk and drive at the same time, and asked to call him back once I’d returned home.

When I finally spoke to my doctor, I knew I would not have been able to drive in the dangerous weather and hear the news at the same time.  While my X-ray was normal, the MRI showed that I had areas of dead bone in both of my femoral heads.  This was a condition called avascular necrosis, or AVN, which had occurred when the steroid medications involved in my treatment had interrupted the normal blood flow to my hips.  Without proper blood supply, the bone had died, leaving dead tissue inside the bone.  The pain and stiffness I was feeling was a result of the swelling and accumulation of fluid to this injured area, affecting my range of motion.  This was a degenerative condition which over time would lead to the “collapse”, or flattening, of the femoral head, making it impossible for it to move freely and comfortably in the socket, ultimately requiring a hip replacement.  Unfortunately, my doctor was unable to tell me definitively if or when this would in fact happen, but there was certainly not much I could do other than try and reduce the weight-bearing load on my hips, and take medication for the pain.  I could use crutches; keep off my feet as much as possible.  All I could think was:  Does this prescription come with a nanny?!  Because I have a kindergartener at home!

That was probably the worse New Year’s Eve ever, improved only for the company of some close, long-time friends who thankfully came over for dinner and offered their support and encouragement.  Rather than kicking off the New Year with the typical resolutions to eat better and exercise more, 2009 started off with the arduous task of researching the best orthopedic surgeons in Boston, to find out what I needed to do next. 

Instead of the usual excitement preceding my 40th birthday, I spent the next several months meeting with specialists, taking pain-killers 24/7, walking with crutches, and watching my workouts dwindle to a short bout on the recumbent bike and the upper-body cycle.  Once again I was lucky to live near Boston, as the chair of the orthopedics department had been recognized as one of the city’s best doctors in Boston Magazine, and was one of the few surgeons in the country knowledgeable about AVN, but the damage in my hips was too extensive to benefit from his cutting-edge stem cell surgery.  It seemed my range of motion decreased with each passing week; I was taking medication first thing in the morning and right through the night.  This was no way to live at the age of 40 with a six year-old.  Just six months after that New Year’s Eve diagnosis, I was calling Dr. Einhorn begging him to replace my hips.

I had my left hip replaced in September of 2009, and the right hip done five weeks later.  The only exercise I was doing for the 10 weeks post-operatively was physical therapy.  Whereas most people would be afraid of gaining weight sidelined for this long, the opposite happened to me.  My activity was so low, and what little I was doing was so painful, that my appetite was next to nothing.  I really had to be starving to drag myself to get something to eat.  But it wasn’t just fat I was losing, it was muscle.  The pendulum had swung to the other extreme and now I was much thinner than normal (but not in a good way).

For what I hoped was the last time, I was committed to my physical therapy and treated my rehab like a full-time job.  By February of 2010 I was walking without a cane, and able to carry a small bag—a HUGE accomplishment!  As my PT tapered off, I knew it was time to make the transition back to the gym, and build my muscle mass back up.  Again I invested in a trainer to get me started, who concentrated on functional exercises and core strength.  I also began Pilates for the first time which increased my strength, range of motion, and flexibility.  Now, two years post-replacement, I still do Pilates, and have resumed all of my favorite workouts (except for running):  Spinning, cardio, strength-training.  I can move so naturally that people who don’t know me have no idea when they look at me that I have two prosthetic hips.

If you’re an active person, being incapacitated by a significant medical injury, treatment, or surgery can really do a number on you, not just physically, but mentally and emotionally as well.  As women, we are notoriously hard on ourselves, and feel enormous pressure to look trim and healthy from a very early age.  As a fitness professional, I enjoyed working out, but also felt an obligation to “look the part”.  It’s not easy, but you can cope with the missed workouts, weight gain and loss of fitness during a health crisis.  Here are some suggestions:

1.)    Pick a mantra:  I like “This too shall pass.”  Choose an uplifting phrase that you find comforting.  Repeating a positive affirmation can help ease the frustration.
2.)    Look within:  After so many years preoccupied with how I looked on the outside, I shifted my focus to taking better care of the inside of my body.  I considered a healthy diet, sleep, and stress reduction just as important as medication in my recovery.  Even if I wasn’t happy with how I looked in the mirror, I made sure I was working on improving my inner health as well.
3.)    Visualize:  Research has shown that elite athletes who visualize their events actually cause their muscle fibers to fire as if they were actually physically competing.  Sitting quietly in a relaxed state and visualizing yourself performing your favorite activities with health and vigor can have a pronounced, beneficial effect on your recovery.  I would listen to meditative “spa” music and imagine myself back at the gym running on the treadmill or in my favorite classes.
4.)    The mind/body connection:  Along the same lines, there is a strong connection between the mind and body.  Suppose you have a nightmare in which you are running away from an attacker.  You might wake up in a sweaty, breathless panic, your pulse racing and your body shaking with fear.  But you’re safe in your bed.  It was just a dream in your mind, but your body doesn’t know the difference, and responds appropriately as if it were reality.  The same is true with visualization:  the more you can practice visualizing being healthy and active again, the more your body can “believe” and move towards healing.
5.)    Go back to basics:  Don’t try and pick up where you left off; invest in a personal trainer, workout DVD's, or at the very least, work out with a buddy.  Sometimes medications or a long hiatus from exercise can cause dizziness or extreme fatigue, and you want to be on the safe side.
6.)  Be a germophobe:  Gyms are notorious for spreading germs, no matter how clean they are.  After chemotherapy, your compromised immune system may not be able to fight off the bugs as well as before.  Bring your own sweat towel, carry hand sanitizer with you, and use disinfectant spray or wipes (if available) to clean the equipment *before* and after you use it.  If the person on the elliptical next to you sounds sick, move to another machine!
7.)    Get a baseline:  If you belong to a gym, ask for a fitness assessment, which is often a free service.  You may be pleasantly surprised that you haven’t lost ground in every area; perhaps your flexibility is still great or your body fat is still in a healthy range.  The results will show you where you need to focus most.  If you prefer to test yourself at home, here's a step-by-step assessment you can do on your own.
8.)    Be flexible:  After treatment or surgery, you may not be able to return to your favorite pastimes.  While this can be initially discouraging, make an effort to “change the channel” (remember that article from last month?) and try and view this challenge as an opportunity to try something new.  I had always wanted to try Pilates, but didn’t have the time.  Each week I’m amazed at what an incredible workout it is—why did I wait so long?!  I used to love running, but cannot do it anymore, so I do Spinning, or intervals on the cardio machines for a more intense workout.
9.)    Take your time:  Don’t rush to do too much, too fast.  There will be days you feel so good that it will be tempting to push a little too hard, or workout a bit too long.  It would be a shame to have a setback after having been through so much.  Here’s another mantra for you, one that I still remind myself of on a daily basis:

“Slow down…and everything you’re chasing will come around to catch you.”

Thursday, September 8, 2011

Thank you, Beacon Villager!

I was just taking a short break from some household chores on this dreary, dark, rainy day to read our local community paper, the Beacon Villager.  I don't have to leave to pick up Jason from school for another 30 minutes, so I turned on my favorite soap and opened the paper....and there on page 2 was a great article recognizing the recent Silver Mom's Choice Award given to WDMSG?!  To see the article in its entirety, click here.  A nice pick-me-up on a gloomy day!

Sunday, September 4, 2011

10 Tips to Taming Your Inner Control Freak

After receiving a serious diagnosis, it is natural to feel fear, shock, sadness and anger.  If the news comes out of the blue, it’s common to feel confusion, disbelief, even denial.  But in addition to these emotions, it’s not unusual to feel a loss of control.  All of a sudden, life as you know it has totally changed.  Everything dear to you—your family, home and job--has immediately taken a back seat to this new and unwanted challenge, and regaining your health becomes top priority. 
As parents, this news can be even more difficult.  What do we tell the kids?  How and when do we tell them…if we tell them at all?  How long will I be out of work?  Will I be able to return and perform at the same level?  How will this health crisis affect the family finances?  What toll will this take on my partner?  As mothers, we wonder who can possibly fill our shoes, doing all the things we do—the way we like to do them?  What havoc will ensue if we relinquish control to others?  And how long is this all going to take?!  We have places to go/things to do/people to see!  All of these questions can lead to a sense of frustration and helplessness, or the feeling that we are no longer “in charge” of our bodies.  There is no reasonable explanation why people who eat well, exercise regularly, drink moderately, avoid smoking, laugh often and have no family history of disease are unexpectedly diagnosed with a life-threatening illness.  It is certainly not fair.  If all of that effort couldn’t prevent a major health crisis, it can be even harder to believe we can influence the outcome.  The lack of control over one’s body, compounded by having to relinquish control to others can be extremely unnerving, particularly for parents, who are accustomed to being in charge of their children, their households, and their jobs.
There is an expression I like which helped me tremendously when I would feel like giving up:  “It’s not the cards you’re dealt; it’s how you play the game.”  I realized that I couldn’t worry about how crappy my diagnosis was, how much treatment was going to suck, how pissed off I was that I was facing more surgeries, or how awkward I felt accepting help from my friends when they had families of their own.  It wasn’t easy watching Steve do all the things I couldn’t do, after working all day.  And he would tell you that I was at my worst, naggiest, whiniest self when I had to give up control.  These were the “cards” I was dealt, and I chose to “play the game” by making a conscious effort to find ways I could be more in control, however small.  In doing so, I felt empowered and less victimized by my disease.  I remembered the words of the Serenity Prayer I had heard years ago:  “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”  Maybe I had to accept my diagnosis and all that it entailed, but I didn’t have to take it lying down.  Here are some tips that worked for me:

1.)  Take charge:  Before I started treatment, I took the time to create a manual for Jason and the house.  I printed off schedules, important phone numbers, and instructions for my mother in law, and placed everything in a 3-ring binder labeled “Nana Sue Control Center”.  Need I say more?!  Showing others the way you like things done not only makes you feel better, but can be helpful to the people assisting you.
2.)  Be proactive:  I buzzed off my hair into a cool “Rocker Chick” cut before it fell out in messy clumps.  If treatment will alter your weight, pick out a couple new outfits ahead of time that will make you feel good.
3.)  Prepare and plan:  I stocked the freezer well in advance, to supplement meals made by others as much as possible.  Even though Steve had to cook and clean up, I could still plan the menu and let him know what to defrost (I joke that I was still the Brains Behind the Operation!).  Don’t worry if you don’t cook—Trader Joe’s has lots of great frozen items!
4.)  Visualize the finish line:  I created Vision Boards—huge collages of pictures and words that I found inspiring and kept me focused on ultimately getting better and putting this whole experience behind me.  If you’re not crafty, you can rip out a few motivational images and stash them in a box, or use a photo album.  The process takes your attention off the present (which might be crappy) and redirects it to the future.
5.)  Chill out:  I listened to guided imagery CD’s almost every night to relax, decompress, reduce pain and visualize my recovery.  Choose whatever method works for you; a little spa music, meditation, yoga…just a few minutes a day can relieve stress, which is very beneficial for anyone, not just patients.  Share your methods with your caregiver—they need to take a break too!
6.)  Looking good helps you feel good:  I put on a little bit of make-up every single day during treatment, just enough to make me feel put together.  Feel free to streamline your typical routine, but even a small amount of “upkeep” can do wonders for your mood.
7.)  Pay it forward:  I contacted newspapers, magazines, TV shows and news programs in an effort to create more awareness of my rare disease.  The Discovery Channel was the only network that responded, and featured my story on an episode of Mystery Diagnosis.  Our local paper ran a story as well.  In fact, I still have people contacting me by phone or email after watching repeats of that particular episode (someone just texted me recently that they saw it on YouTube!).  Whether you participate in a walk, contribute to a fundraiser, or start a foundation, there are endless ways to “give back”, and have some influence on another patient’s experience.
8.)  Make connections:  I stayed connected with support groups.  If you don’t feel up to attending in person, you can “stay in the loop” via email digests.  Online groups are a great alternative to meetings if you are more of a private person.  Whether you are looking for information, or wish to share your own experience to help others, support groups are a win-win for everyone.
9.)  Balance business with pleasure:  Steve and I make it a point to visit a favorite restaurant on the days I have doctor appointments, turning an otherwise gloomy day into an opportunity.  Regular check-ups become less stressful, and we actually look forward to the time together.  Set aside time to pop into a nearby coffee shop or browse a special store so that you go home on a high note. 
10.) Bring it:  Refuse to let your disease have control over you--go into this journey with both fists flying!  Show it that it chose to mess with the wrong person.  You are the only one who can control your mindset--make it feisty!

Many thanks to the Mom's Choice Awards!

The month of August really flew by…mostly because we were literally flying in and out of town!  After a relaxing week in Maine, my family and I unloaded, repacked and set off in different directions—the boys headed down to the Cape to spend the weekend with friends while I….wait for it…jetted off to Paris, France!  With a lot of help from Amex Rewards, my good friend Dafna, the folks at work and Steve’s blessing, I was able to accept my friend Ali’s impromptu invitation to join her in Paris to celebrate her 40th birthday!  While Jason hit the beach with his friends to search for hermit crabs, Ali and I toured, shopped and ate our way through the City of Lights for four days that flew by way too fast.



Ali and I stayed at an adorable boutique hotel, Hotel 7 Eiffel, which was just a short walk away from L'Ecole Militaire, and the beautiful pont Alexandre III.  We kicked off our first evening in Paris with a walk to the Eiffel Tower and a stunning ride on the Seine via the Bateaux Mouches.  Over the weekend, in between one amazing meal after another, we walked for miles taking in the sights, shopping, and enjoying some long overdue quality time together.



Just as we were recovering from a fun-filled summer and getting packed up to head back to school, I received some terrific news.  WDMSG? earned a Silver Mom’s Choice Award!  I was thrilled to receive this honor, and grateful the book was recognized among the best in family-friendly media, products and services.  For more on the Mom’s Choice Awards, the judges’ panel, and where to find Mom’s Choice products for your family, just click on the links.

We wrapped up the season with a Lowell Spinners game (they beat the Staten Island Yankees in one extra inning!), followed by Jason’s first trip to Fenway Park to see the Red Sox play.  The weather was incredible both nights, making it hard to believe that the first day of school was on August 30.  The lazy days of summer may have come to an end, but we can still enjoy the lingering warmth and sunshine as we kick off the school year!

Saturday, August 20, 2011

Change the Channel--Cultivating an Attitude of Gratitude

What could possibly be good about learning that you have a rare, life-threatening disease?  What’s the upside of hearing that you need aggressive treatment as soon as possible, or you may not see your child’s next birthday?  Where’s the “gift” people speak of when you experience something this earth-shattering?  And how exactly am I supposed to appreciate the experience the Universe has bestowed upon me?
When I was diagnosed with amyloidosis, trust me, I was less than thrilled.  I had a son who was barely four years old; I was about to celebrate my 10th wedding anniversary.  I was terrified of what chemotherapy would be like, and even more afraid of what would happen if treatment didn’t work.  I cried for days, wondering why this was happening to me, what I’d done to deserve this, and how my family and I would get through the experience.
Up until then I’d been the kind of person that believes everything happens for a reason.  During the years we struggled with infertility, I convinced myself our baby would arrive when the time was right, and when Jason was finally born, I felt all those unsuccessful cycles were necessary in order to have him.  When I broke my leg in 2006 and was laid up in a cast for 12 weeks, I figured the Universe was trying to send me a message loud and clear to slow down, stop trying to do so much, and give more undivided attention to my family.  But when I learned that my own body was turning against itself, despite years of being a healthy eater, vitamin-popper, fitness nut, and nonsmoker, I simply could not understand how or why something this crappy could happen to me.  Suddenly, my stomach would churn at the phrase, “everything happens for a reason”.  Really?!  It just didn’t seem fair.
Then in my mailbox one day I received a package from an anonymous sender (who has since been identified!).  It was a DVD called The Secret, and after watching it, my outlook turned around immediately.  It was my first introduction to The Law of Attraction, and I was so inspired by its powerful message, that I wanted to learn all I could about how to use it to help me get healthy again.  After watching The Secret several times, I read the book by the same title, as well as several others on the topic, plus a couple of great DVD’s (What the Bleep Do We Know, and You Can Heal Your Life by Louise Hay).
The primary message that resonated with me was that my energy needed to be focused on what I wanted, not what I didn’t.  Whatever thoughts and emotions I was having would only create more of those thoughts and emotions.  So if I was feeling angry, miserable and helpless, I would continue to manifest those feelings and results in my life.  I certainly did not want to create more misery and negativity, quite the opposite.  I wanted to recover and heal, and come through this a better person.  Staying home all day in my pajamas waiting to learn the reason for my diagnosis was no longer a conducive way to spend my energy; I certainly didn’t want more of that.  Yet I was also well aware that positive thinking was no guarantee of remission either, but it certainly couldn’t hurt.  At the time, I had no idea what lay ahead for me, but decided from that point forward whenever a negative thought or emotion occurred, to “change the channel” to a more optimistic way of thinking.  Since I didn’t know (or care) what the reason was for my diagnosis, I decided instead to cultivate an attitude of gratitude, and try and find things to be thankful for along the way.  While I knew that positive thinking was no replacement for traditional medicine, I considered optimism to be an essential part of my healing and recovery, and necessary for my medications to be as effective as possible.
I started by redirecting my focus to what was working in my life.  I began to make a conscious effort to put a positive spin on every negative thought that entered my mind.  I was thankful that a treatment existed for my disease, and that I lived near the leading facility in the world for amyloidosis.  I felt incredibly grateful for the support of my family, and the incredible circle of friends who selflessly rallied around me.  I appreciated the commitment and expertise of the doctors doing their best to make me well again.  And most of all, I thanked my lucky stars to have a loving husband who I could depend on, standing by my side the entire time.
When I returned home after several weeks in treatment, I was so happy to be near Jason again.  I was still very weak and limited physically, but instead of moping about what I couldn’t do with him, I redirected my focus on what I could do.  I enjoyed being able to sit and play games with him, snuggle under blankets for popcorn and a movie, give him a bath, read stories at bedtime.  I soon realized that I still had so much to be thankful for, and quickly shifting my focus from a negative to a positive thought truly made a distinct difference in how I felt.
Despite my commitment to the glass being half full, my spirit was still being tested.  Six months after my first bone marrow transplant, I learned I’d have to do it all over again.  Once I recovered from my second treatment, I found out the medications used had caused my hips to deteriorate.  Six months later I realized I needed to replace both of my hips, which led to two major surgeries followed by months of rehab.  However, my practice of “changing the channel” has become a habit, almost second nature.  I’ve also come to see that perhaps there was a reason for this entire experience after all.  I’ve been able to help and support other patients newly diagnosed with amyloidosis, and increase awareness of this disease through newspaper articles and TV appearances.  I’ve created a unique resource to help children cope with a critically ill family member, regardless of diagnosis.  And even though I’ll need to be tested every year for the rest of my life in order to see if the disease returns, I’ve learned that the real “gift” of this journey was an attitude of gratitude to last a lifetime.  This is truly a gift I’ll pass on to Jason, and one I hope will be handed down to his own children.