Thursday, December 30, 2010

Here comes a new year!

Along with noise makers and the countdown, New Year’s Eve comes with a desire to look back and give the memories of the past year another look. Every year I wonder how 365 days could go by so fast. At the same time, I naturally begin to make room for the new memories about to arrive. Even the lyrics of the traditional New Year’s Eve song, “Auld Lang Syne,” call for reflection: “Should old acquaintance be forgot and never be brought to mind…” I think old acquaintances contain treasures that are exclusive to long term relationships and provide confidence for the path into a new year.

Before 2010 draws to a close, I want to express my heartfelt thanks to both old and new acquaintances who have supported my call to action through Be the Change. If you prayed, encouraged, trusted or believed in the vision, please know I am extremely grateful. Be the Change has made great strides because of this support. Many lives and relationships have been impacted by patient and family stories, including the one that inspires Be the Change. Our story started long ago with a divine purpose in Michael, the change maker and dream weaver.

Ralph Waldo Emerson once said, “Don’t go where the path may lead, go instead where there is no path and leave a trail.” That’s what Michael did - he paved a path and left a trail. In 2011, Be the Change will continue to journey on that path, giving a voice to the patient and family perspective in health care. Be the Change will build upon the foundation of 2010 to establish new partnerships that nurture the human experience thereby improving the medical one.

Michael’s life, a model of courage and unlimited spirit, left a trail for each and every one of us. This new year, make a path, leave a trail and Be the Change.

“For auld lang syne, my dear, for auld lang syne, we'll take a cup of kindness yet, for auld lang syne. And surely you'll buy your pint cup and surely I'll buy mine! And we'll take a cup o' kindness yet, for auld lang syne.”

Happy New Year 2011!

Tuesday, December 21, 2010

Our Christmas story

A young man seated among first year medical students at a Be the Change presentation last Friday asked me, “What did it take for your family to stay intact amidst so much medical crisis?” My answer flowed easily since I’m absolutely sure of what it took.

I expressed my gratitude to this student from Mayo Medical School for asking the question. It gave me the opportunity to talk about the real human experience, which for us includes unfailing love consistently received from family and friends. There was the answer; it takes love and lots of it. Love exemplified by selfless service to our family is what sustained us, making us resilient. It continues to supply the strength we need to keep pressing forward.

Although loving service is a free gift, it’s sometimes difficult to receive especially when pride wants some space. Yet, when able to humbly receive you view something greater than yourself. Through grace, love becomes tangible by a blessing chosen specifically for you, answering prayers of the faithful.

Thankfully I say we are loved beginning with the One who loves us most. Love and kindness demonstrated to us in our desperate need by the hands and feet of family and friends, even strangers. It’s our own version of the Christmas story; people making room for us, giving what they had. Similar to what was done for a weary couple in Bethlehem thousands of years ago.

My hope and prayer is that you too receive deep, unconditional love and because you experience it, you are changed. And if ever you are asked what it will take you can reply, without doubt; it is love.

Merry Christmas and Happy New Year 2011 from Be the Change.

Monday, December 13, 2010

Nothing like a snow storm

When my kids were school age, a snow storm always began with the hope that Lakeville schools would close. That would lead to cries of disappointment and frustration as they watched the school alerts go from the letter L to N announcing, New Prague School Closed. Not Lakeville Schools however, never Lakeville according to my children. Even more annoying was that they had to go to school knowing their cousins living in New Prague had the day off, but not them.

Finally home from school backpacks were set aside, replaced with the proper outdoor gear required for playing in the snow. The best was when there was enough snow for the plowing professionals (actually our wonderful neighbors) to pile the snow near our house, making the perfect spot for sliding and snow fort construction.

A picture of Michael that sits on my desk holds a precious memory of him in the snow. The picture was taken a snowy December similar to the one we are having now. My husband was outside clearing snow off the driveway and Michael was with him, as usual. Michael was playing in the snow pile directly in front of the kitchen window, perfect for me to keep an eye on him while I was preparing supper. I remember thinking how odd his bright green wheelchair looked as it sat abandoned next to the snow he was playing in. I hadn’t seen the orange ball of his winter hat pop up and down for a few minutes so I opened the front door and called his name. Out of the snow popped his sweet face all covered with snow. With a big grin he yelled, “Here I am Mom, I’m digging a tunnel.”

In that moment, Michael didn’t have a rare disease. He didn’t need to use his wheelchair. He was just a boy playing in the snow. I stood by the door a few more minutes debating with him about the time he should come in for supper. He was wishing he could stay outside just a little bit longer and I was wishing his life could always be that simple.

Waking up Saturday morning to the blustery snow storm, I thought about the excitement my kids would have had regarding this big storm, especially if it wasn’t on the weekend. This time even Lakeville would have surely cancelled school. I gazed at the picture of Michael in the snow tunnel he dug in December 2003. Memories of the simplicity in that evening came rushing in, as well as, thoughts about the complexity in his young life back then, which seemed to crowd the memory. Painful dialysis had just begun and a kidney transplant loomed on the horizon. Life in a wheelchair, especially during the winter, was added to the list of challenges he faced.

There’s nothing like a snow storm, which comes blowing in without permission changing plans, canceling school events, and altering the busy holiday season. Another perspective provides us with an opportunity to create your own tunnel either in the snow or to your soul. Enclosed by the stillness of a blizzard day, you find solace there. Whatever your tunnel, know it can hold you joyfully captive, even for just a little while, by the simplest of pleasures winter weather has to offer.

Put value in moments rather than months; an excellent way to Be the Change.

Tuesday, December 7, 2010

What a great Godmother

I can remember back when I was little, how she came to the Christmas parties held for my Mom’s side of the family, with the most beautifully wrapped gifts I ever saw. The paper perfectly matching the giant bow, exquisitely tied with her creative hands. One year she gave me a golden colored jewelry box that I honestly thought was made of real gold. Each time we met she would proudly announce my name in a way that made me feel special. From my view,
she was the one who was special.

I’m referring to my Godmother Maxine. She went to heaven last week following a courageous seven year battle with cancer. Giving every kind of treatment a try, she definitely fought like a true warrior. When her body began to fail, it was her spirit that remained strong. While visiting her a few months ago, I commented about the beautiful perfume bottles in her bathroom and the memories I had as a young girl admiring the bottles she had then. Each one unique and beautifully displayed on a glass tray placed upon her bathroom counter, just waiting for use. Back then, I thought she was like Zsa-Zsa Gabor simply because she had so many elegant perfume bottles. I realize I still might think that, only because I know Aunt Maxine really is a super star.

Many women have influenced my life journey, my Mother, number one. Without a doubt, my Godmother is next on the list. Aunt Maxine was amazing; a great mother as well as a successful business woman. Her classy style, flair for fashion, plus many other talents, have left a permanent mark on me. They consistently demonstrated unlimited possibilities to a young farm girl like me. I’m extremely grateful for a loving relationship with a woman beautiful inside and out.

As my own cancer treatment became a fading memory, hers unfortunately increased. We discussed our human life experiences inside dreadful medical experiences and the need for improvements regarding the quality of health care. Now that Be the Change has moved from kitchen table discussion to action, Aunt Maxine and others like her will be the motivation in pressing forward. Advocating for the patient and family perspective to be fully represented in future health care relationships. Leading us to the day when a human experience will be as radical as the medical one.

From now on, I plan on wearing more fun jewelry and using beautiful perfume bottles in honor of my Godmother. Her spirit remains, helping identify ways to Be the Change.

Wednesday, December 1, 2010

Black Friday, Cyber Monday, what next?

Monday morning my email inbox was filled with “Cyber Monday” advertisements enticing me to check out the great deals. I was reluctant especially since I never even finished looking at the huge stack of “Black Friday” sale ads last Thursday. I felt overwhelmed by each ad claiming to have the lowest prices ever. Really people, the lowest prices ever?

Regardless, Monday morning I just couldn’t resist the ease everyone claims is available by shopping online. I will admit that I did find a few nice things for a great Cyber Monday price but it took me all morning to browse through the multiple sites. I had a couple items in my shopping cart but ended up making zero purchases. I found it difficult to make a purchase without a tangible view. That shopping experience got me behind schedule in my work and a stiff neck. I fail to see the good value in all that, but of course that’s just me!

I am the kind of person that misses hotel keys, buttons marked on/off and pen on paper. I’m not even on Facebook yet. I prefer the kind of friends you invite over for dinner or meet for coffee. I like the convenience of computers and other technologies but only when they work properly. To be completely honest, I still feel as if my cell phone should only be used in the case of emergencies.

My online shopping attempt did give me some time to think while waiting for computer screens to change. What if the same focus and energy was put towards health care improvements? Imagine the endless possibilities for the patient, family and provider initiative with a Black Friday/Cyber Monday marketing budget available for enhancing health care relationships. We could call it Be the Change Everyday. No sales gimmicks, no need to stand in line or even make a minimum purchase. Just dependable advertising, defining simple and specific ways we can Be the Change everyday. Impacting the way health care is received and delivered everyday, making it the best deal ever.

Whether you prefer the convenience of shopping online, ad strategies or even getting up at midnight to be the first in line, have the same zeal for your everyday relationships. Quality personal, professional and health care relationships create a unique value. The investment will surely provide a return unlike any other, even in this economy. This holiday season Be the Change Everyday, even if you don’t see it advertised.

Monday, November 22, 2010

Prize winning Thanksgiving

It was a couple days before Thanksgiving break. Michael, seated in his wheelchair, was holding a pumpkin while I glued on feathers and multiple little trinkets. Sure to make it the prize winning creation for a contest at school the next day. The best part of this treasured memory is the stories that have followed as a result of the blisters we received from doing this project. It was the first time either of us used an electric glue gun and didn’t realize that some cold water nearby was a necessity. I can still picture Michael laughing hysterically as I rushed through the kitchen screaming, “Hot glue, hot glue”.

That is merely one of the hundreds of Thanksgiving memories I hold sacred like a priceless gem woven into the fabric of my life. If visible it would be a banner displaying the word grateful for all to see. I recall the Thanksgiving feasts enjoyed at my parents house. Multiple tables lined up in the basement covered with each of our favorite things to eat, prepared with great detail by my Mom. Thoughts of my Dad sharing the latest joke he heard, him asking the grandchildren to pull his finger or if they finished their can of pop. I remember the Thanksgiving we were able to enjoy a Zimanske family hay ride; huddled together on a hay rack from the farm. The video camera taping each child announcing their age and Jessica proudly proclaiming she was not 6 but “6½ years old”, which became a memory the Zimanske cousins still laugh about.

Sure to come as no surprise to those who know me, I love to tell stories and share my memories. I enjoy experiencing the shared emotions that flow from the reruns of a happy memory. It feels as if the joy of the memory wraps a loving embrace around the group just because they heard the story, creating intimacy between those who now collectively share the memory.

I am, to my knees, thankful for the many memories I have that give way to great stories. Some happy, some sad, some intense, some just plain silly. Because of them, sheltered in grace and mercy, I have a depth of appreciation and gratitude that is divinely unexplainable, especially during this season of thanks.

At the risk of sounding clichĂ©, remember to say thanks this Thanksgiving. Seize the moment; even if the words don’t come easy. Tell that special someone in your life that you are thankful for them. This Thanksgiving, tell a story and share your memories or create new ones as you Be the Change.

Wednesday, November 17, 2010

Everyone needs a good partner

My life is tremendously blessed by great partners - my husband and children, my family and friends. We all partner together in various ways to simply lighten the load. In addition to my personal life, I have been impacted by great work partners, beginning in high school with a wise woman who worked at the local hardware store. All of these partnerships make me better because we act together to create something more powerful than if we acted alone.

I read once that everyday we should do something that inches us closer to a better tomorrow. Be the Change desires to do just that, simply by being a good partner. Be the Change (BTC) works to develop a new partnership in health care by defining a future for the patient and family perspective.

With good partners, BTC will:
-Give a face and voice to the Patient Family Perspective (PFP)
-Respectfully share personal health care experiences and insights as a catalyst for real change
-Maintain a website containing patient and family stories, along with speaker information about representing PFP in your organization
-Create innovative ways to improve health care quality and patient/provider safety
-Represent PFP in chronic care situations as liaison for coordinated care between patients, families and providers
-Receive fair compensation for patients and families representing PFP by establishing value and equality through fiscal partnerships with medical providers and administration.
-Work hand and hand with the medical community advocating for PFP and humanize medicine by strengthening relationships
-Obtain a PFP position in boardroom decisions
-Educate medical students by enhancing current curriculum that more consistently lines up with PFP
-Educate current medical staff how to effectively partner with BTC
-Develop brochures, books and video for everyone to partner with BTC
-Focus on the truth, which is we all want the same thing - the best possible outcome for the patient

Everyone needs good partners, especially in Minnesota where we plan to Be the Change.

Tuesday, November 9, 2010

Change and more change

This past weekend we celebrated my father-in-law’s 79th birthday. On the drive home I thought about the multitude of changes he has experienced in his seventy nine years. Including the new changes he is forced to experience because of varying health conditions. None of us are immune to change and then more change. One of my husband’s famous sayings is, “We don’t like change”. We don’t necessarily have to like change, it’s what we learn from it that truly changes us.

One of the definitions of change in the dictionary is to transform or convert. I can relate to those simple yet complicated words. We had to transform our life many times throughout Michael’s illness. Each conversion definitely not easy, in fact just recently demonstrated in our change of address. In every change we grew beyond our limited view, learning things we wouldn’t have had we not accepted the call for transformation.

Michael was our change leader, which wasn’t what I thought initially as we were inundated with changes. I naturally moved into the matriarchal role of, the one in charge, leading my family through these many changes. On the other hand, Michael thought he was in charge and the boss of me! The truth is Michael had to change the most because of his rare disease. I think innately he knew in order to avoid SIOD be who he was, he had to take charge and be a leader. Amidst all the changes he still had this infectious desire to have fun. That helped him never lose sight of something bigger and better beyond all the change and more change. Now as I look over those years, I see the truth of who was really in charge. I thought I was the one teaching him, but actually he was the one teaching me.

Priceless gifts are offered through change, from a variety of sources. From a boy who put the cha-cha-cha in every happy birthday song to the man we sang happy birthday to last weekend. Each one providing wisdom to us by the changes they encountered in their life, ultimately teaching us to Be the Change.

Wednesday, November 3, 2010

Are you fully informed?

Informed consent is a term used quite often in the health care environment. We appear to be informed by colored brochures and precisely titled information. They assist us in giving consent by a simple signature on a form. However, before consenting to anything medically we should ask ourselves, are we as patients and families really fully informed?

The complexity of being fully informed as well as the ability to make an informed choice was defined in a few stories I was recently told. In every doctor appointment or hospitalization we are asked for consent to many things, whether we realize it or not.
The concern lies in the following:
-Have we been given all the information necessary to make an informed decision?
-Have we been given adequate time to ask questions in order to safely consent?
-Have we been given the proper environment to accurately weigh all the options in order to give an informed consent?

At most medical appointments, we are given large doses of information. It makes having a notebook and pen with you at all times, a necessity. Medical data is complex with varied interpretations frequently exceeding one person’s capacity to absorb and process it. There is often a need for follow up conversation, either by phone or appointment, especially following a lengthy appointment involving life altering decisions. It’s not unusual to return home, where the stress of the appointment lessens, and new concerns or questions come to mind. Writing them down in your trusty notebook allows for them to not be forgotten, giving you the peace of mind they will be addressed later.

Sometimes patients and families are given only the data that lines up with the medical providers personal opinion or agenda. Fully informed choices are made based on all the information available with the opinions and agenda of both patient and provider presented and communicated as partners.

Consider the following questions about any diagnosis or treatment:
-Have I been given all the information, not just what others consider important?
-Have I been given all the treatment options including holistic and controversial?
-Have I been given all the risks, both physical and emotional?

With any medical appointment, a patient enters into a fee for service partnership with a provider. Not only are you paying them to do a service for you, but their profession promises to provide a level of respect and service that, quite frankly, is often lacking in our current heath care. Patients and family members are frustrated because of the many times they sense annoyance from medical staff in tense facial expressions, grumpy tone of voice or even words that too often rush our choices and decisions. It leaves patients and families feeling somewhat inferior for asking another question or asking that information be repeated at a time when they should be feeling confident and assured. Don’t allow that poor conduct to overshadow your expectation for safe, high quality service, which is valued in any good partnership.

Eleanor Roosevelt said, “No-one can make you feel inferior with out your consent.”

Be the Change says be fully informed before you give consent.

Wednesday, October 27, 2010

No perfect trick or treat

I have great Halloween memories with the kids. The 1991 Halloween blizzard when Jessica got her boot stuck in the snow trick-or-treating, dumping her bucket full of candy in the snow. The year Michael dressed up as a Dalmatian puppy and cried for ten minutes because he didn’t want his nose painted. The time Jessica carried two large pumpkins from the furthest corner of a pick-your-own pumpkin patch because Michael insisted we search the entire field for the biggest one, which resulted in me having to carry him and Jessica mad at Michael.

The list of memories could go on and on. On a week like this, they run through my mind like my favorite movie on fast forward. Inside the fun and the not so fun associated with these types of family events and the memories it creates, lies an important lesson learned. In real life, nothing is perfect. Perfect doesn’t live here.

We all desire that perfect Hallmark moment with our families, but most of the time, it’s in the imperfections that we find our most cherished memories. When Michael began having unavoidable pain from walking, he and his cousin dressed up that Halloween in Scream costumes scaring unsuspecting Halloween guests. The first Halloween Michael was using a wheelchair he was concerned he wouldn’t be able to go trick-or-treating because of it. That was until he and a friend decided they would both wear all sorts of bandages covered with blood (ketchup) and they used the wheelchair as the perfect prop for two kids dressed up as accident patients. Another year Michael was in the hospital on Halloween convinced he wasn’t going to get any candy because he wasn’t at home. By the time he left the hospital a few days after Halloween, he had a bucket full of candy and toys from a hospital version of trick-or-treating. In addition to that, his school friends shared their Halloween candy with him so he had two big buckets of candy that year!

Perfection is not only defined by acts done perfectly but in the excellence of the act. One of the many blessings in having a child with special needs is a view of perfect that’s indescribable. For example, there was an excellence in the way family and friends chose to adapt to any situation changed by Michael’s progressing disease. Love was put into action creating something excellent, which helped him as well as us face what some would call limitations. When in truth, the only real limitation is a delusional sense of perfect.

In representing the patient and family perspective, Be the Change will strive for realistic excellence in strengthening relationships between patients, their families and medical providers, which will improve health care. Patients and their families are omniscient, living with medical experiences that are imperfect yet excellent in the way they teach us what is really important. It’s the catalyst that will lead us to a health care environment that is less frustrating and more respectful of each others human experience.

The morning of Michael’s funeral his middle school friend wrote on Caringbridge, “I never knew perfect until I knew Michael”. In heaven, Michael knows perfect, that’s where perfect lives. Here, we are simply trying to Be the Change.

Wednesday, October 20, 2010

Are you honest with you?

Years ago, my daughter and I made a pact, promising to each other that we would always be honest. As a mother with one child in high school and the other in the hospital more than in junior high school, it was crucial. Often apart and surrounded by serious health care issues, my daughter needed to trust, without a doubt, that I was telling her the whole truth and vice versa.

By making that promise I discovered that in order to be honest with her, I had to be completely honest with myself first. Sounds simple enough until you’re in an extreme situation like the death of a child, which forces you to go deep inside your soul looking for answers to unimaginable questions. There, grace whispers, how honest are you with you?

At night, pretending to rest in a self created chair-bed next to Michael in his hospital bed, I would watch him sleep trying to contemplate life without him. It’s a scenario filled with heartbreaking thoughts and questions no parent should have to ponder. Even so, as Michael’s disease spun out of control, I knew earthly life without him wasn’t out of the realm of possibility.

That kind of reflection required a level of honesty that most of the time I avoided, which worked for a short time. Then our situation got to where I realized if I couldn’t be honest with the real truth held in my spirit, could I be honest with others, especially my daughter. Reluctantly, I let that soul searching question peel away layers of complicated emotions. Although an internal process it can also display itself externally in various ways while coping with the unknown. Despite my attempts to avoid it, then and now, I am consistently brought back to the same basic questions. Am I being honest with myself? Am I facing the truth, the whole truth and nothing but?

The patient and family perspective represented by Be the Change demands that same type of trust found in the pact I made with my daughter. It requires a commitment to the truth about our human and medical experiences, and the willingness to share them. Without a doubt it will include successes and failures. Respecting that commitment will lead us to a place where medical providers will feel safe to do the same because of new relationships, partnerships and value impacted by simple truth and honesty. Be the Change calls for monetary value to be given not only to experts with expansive titles, but also to patients and families with expertise schooled in another venue, which provided a unique title equivalent to any degree. In that type of fair financial exchange we will come to the table as patients, family members, and providers, elbow to elbow, as true equals in knowledge, insight and value.

Michael was very honest; sometimes in the wrong place and at the wrong time! Every Mother can understand what that's like. However, when he was being honest he challenged the rest of us to do the same, especially in the medical community. Be the Change keeps making progress by simply being honest, one new relationship and partnership at a time. In honor of Michael and all the ways he taught us to Be the Change.

Friday, October 15, 2010

October - National Breast Cancer Awareness Month

Five years later, I’m still surprised when someone asks me about my breast cancer. It’s as if I need to pause for a moment and ask myself, did I really have breast cancer? In truth, compared to the grief and sadness I felt from Michael’s death, the cancer, surgeries and treatment weren’t that bad. Even with the SIOD prognosis, it was still unbelievable what happened to Michael. I think a part of me hopes to wake up one morning and find out it wasn’t real. I guess, the same could be true for my breast cancer.

Every cancer patient has a story. It leads them to a vast array of choices and decisions regarding treatment, both physical and emotional. For me, with my family history, having a bilateral mastectomy and chemotherapy was a must. Then a couple of surgeries after that insured the best possible outcome with the BRCA2 gene present in my DNA. The breast cancer was removed ASAP, the risk of other cancer addressed and I have been cancer free since 2005.

My decisions regarding cancer treatment didn’t come lightly. It included multiple medical consultations, lengthy conversations with breast cancer survivors, books, articles, internet research and countless hours of prayer, which led me to informed choices with spiritual guidance. My life story definitely dictated my choices but along with that was a spiritual triangle of grace. There I knew the choices I was making were right for me.

October is National Breast Cancer Awareness Month. I stand among thousands who are also surprised that they have breast cancer. I encourage you to offer them support, love and respect in the choices they make based on their life story. Assumptions and judgments, often made, are a naive mistake. Be the Change lends its support by representing the patient perspective in honor of every person living with breast cancer as a part of their story. Also, in memory of those whose story includes grief of a loved one who has died from breast cancer, Be the Change embraces you.

My breast cancer prognosis is simple. “And now these three remain: faith, hope, and love”, found in 1Corinthians 14:13. I choose to live my life by those three categories, refusing to be defined by any medical diagnosis. Find your way to be defined when you dare to Be the Change.

Tuesday, October 12, 2010

Eye-opening experience with The Minnesota Daily

Imagine you’re a college student at the University of Minnesota. You take a few minutes away from studying to indulge in one of your favorite things - reading the Minnesota Daily campus newspaper. As you open the paper to continue a story from a front page article, you’re shocked to see a photo of your cousin and best friend. That’s exactly what happened to my nephew.

A few weeks ago, I was delighted to be contacted by Taylor Selcke, a writer for the The Minnesota Daily, who was interested in doing an article about orphan drug research. She found my blog and had questions about Michael, his rare disease and its effects on our family. As it turns out, my nephew wasn’t the only one who was shocked.

Even though Michael saw multiple doctors from the U of M who ultimately diagnosed him in 1999 Schimke-SIOD, I had no idea what orphan drug research was. I was surprised to find out that the Uof M has a Center for Orphan Drug Research and SIOD would be classified as an “orphan disease.”

Be the Change is in full support of any research, especially conducted in Minnesota, that can benefit any patient or family suffering from a rare disease. Thank you to Taylor Selcke for her contribution towards a heightened awareness of research for rare disease and the University’s Center for Orphan Drug Research. Since my family was unaware of these services available at the University of Minnesota, it’s another eye-opening experience demonstrating the extreme need for Be the Change. Click here to view Taylor’s article or see the full text pasted below.

Families look to ‘orphan drug’ development at U

Orphan diseases affect 25 million people in the United States
By Taylor Selcke

For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up.
The doctor said he wasn’t growing like a normal 5-year-old, and full body X-rays revealed the abnormalities in his joints. It took two years for doctors to recognize the disease — Schimke Immunoosseous Dysplasia, distinguished by short stature, kidney disease and an overall weakened immune system.
The disease is estimated to affect one in every 1 million to 3 million people. It’s one of more than 6,000 "orphan" diseases in the United States. To be classified as an orphan disease, there must be fewer than 200,000 cases in the nation.
Orphan diseases affect 25 million people in the United States, according to Dr. Ramaiah Muthyala, an associate professor in the University of Minnesota College of Pharmacy.
And at the University’s Center for Orphan Drug Research, researchers are working on multiple new treatments.
"To have an orphan product, the condition must be rare and there must be some evidence that the drug will work for that condition," said Dr. James Cloyd, the director of the Center for Orphan Drug Research.
The Orphan Drug Act was passed in 1983, creating incentives for companies who may be hesitant to develop orphan drugs because of high costs.
According to Cloyd, more than 350 new drugs have been developed and approved by the FDA since the Orphan Drug Act of 1983.
To help companies obtain orphan-drug status, the University hosted a workshop with the U.S. Food and Drug Administration in August.
Minneapolis was chosen for the workshop because of the University’s Center for Orphan Drug Research, Cloyd said.
"This conference benefited companies who were intimidated by the FDA," he said. "It gave them a chance to sit face-to-face with an FDA staff member and get feedback immediately."
Cloyd said he hopes these workshops will accelerate the process of obtaining orphan drug status.
For Zimanske, there was not an orphan drug to lean on.
As he got closer to needing dialysis or a transplant for his kidneys, the Zimanskes moved Michael’s primary care to the University, just one of the many hospitals where they spent much of their time.
Michael Zimanske died just more than five years ago from a massive stroke. He was 13 years old.
For his mother, Theresa Zimanske of Lakeville, Minn., the experience brought enlightenment.
"When Michael was being treated, he really opened our eyes to the challenges young children face when they are diagnosed with a rare disease," said Zimanske.
Although from different parts of the U.S., Gina Gareau-Clark from Georgia can relate to the Zimanske family. It has been a year since Gareau-Clark discovered that her twin daughters, Julia and Maya, five years old, had mitochondrial encephalomyopathy, a disease that prevents the body from converting food into energy.
Her days are filled with multiple therapies, which the twins get at school and at home. It’s a constant struggle for balance, Gareau-Clark said.
"We want them to participate in therapies that would benefit them the most without robbing them of too much energy."
Julia and Maya need constant assistance to carry out activities many take for granted, like walking and talking.
"[Their symptoms] vary from day to day. Sometimes they go limp and lethargic because their body can’t produce enough energy," said Gareau-Clark.
Gareau-Clark doesn’t see a time when her daughters will be able to care for themselves — unless research and orphan drugs change that.
The orphan drug they now use is by no means a cure, she said, and it’s costly.
"It costs us $350 a month for the drugs Julia and Maya need. Over the course of the year, we have spent $10,000 in out-of-pocket expenses because insurance doesn’t cover it," Gareau-Clark said.
But Zimanske and Gareau-Clark remain hopeful that orphan drug research will provide better options.
"For now, all we can do is live day to day," said Gareau-Clark. "The heartbreak is always there. You appreciate your children so much more, and you want to hug them all of the time. Even though it can be daunting, be grateful for every moment and remember that they are here now."

Monday, October 4, 2010


A kind woman working in the kitchen at the Woodshed Gathering Place located inside Zuber’s Homestead Hotel asked, “What would you like made for breakfast tomorrow?” As we chatted for a few minutes about the breakfast choices, I felt so grateful that she made breakfast. Last week, I experienced that type of gratitude many times during a trip to the Amana Colonies in Iowa. It was the kind of trip where saying thank you hardly seemed adequate enough in expressing my gratitude.

We share a treasured friendship with a couple who got married three weeks prior to us. It’s a relationship that began by two young girls who worked together and became friends, then grew into a supportive bond between two couples that have known each other over twenty five years. As our 25th wedding anniversaries approached, our husband’s decided to plan an anniversary trip for us, which would involve a surprise destination. The mystery location was finally disclosed en-route last Monday, including the fact that mini surprises would be embedded into each day.

From that moment on, each place we visited and every person we talked to, my friend and I shared our surprise anniversary celebration story with them. As we shopped and toured the sights, we got acquainted with some of the locals. It was apparent that a close knit relationship exists in this small community through valued partnerships. Our husbands became celebrities as people learned about their surprise anniversary vacation ideas and how happy they have made their wives.

A few things I'm grateful for:

~The comfort of a beautiful hotel
~Waking up to home-made breakfast
~The sights and sounds of my childhood
~The beauty of farms and majestic wineries
~A picnic lunch at 1:00 in the afternoon during the week
~Laughing from morning until night
~Friendships that last forever
~A marriage still full of surprises

During our vacation, I had another privileged opportunity to see exactly what Be the Change believes and it revealed an unplanned surprise. By sharing our anniversary story and some of our various experiences, new thoughts and ideas were sparked in the minds of those we talked with. Gratitude born out of acts of love were demonstrated, not just in words, but in action. It became its own unique form of influence, which impacted others, including us. By it we were all changed.

I am sincerely grateful and again reminded of the great value in sharing our stories, which allows our human experiences to Be the Change.

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to view R.A.R.E Blog Grateful in MN

Wednesday, September 22, 2010

In sickness and in health

Twenty five years ago I said, “I do” to my best friend on a rainy September Saturday. We vowed to each other, “from this day forward, for better or for worse, for richer or for poorer, in sickness and in health”. In those words we promised to stand by each other in marriage, no matter what, as husband and wife, the epitome of relationships.

Back in the day, many engaged couples preparing for married life together, selected tableware at Daytons. My fiancĂ© and I went to Daytons but the hair salon instead, helping my Mom select a wig during her cancer treatment. In one way or another, our marriage has appeared secondary to illness, including the rare disease diagnosis of our son. Usually, I don’t share many of the events that make up our life story, assuming the majority of people will consider it impossible to believe.

Truth be told, it’s a story of two soul-mates who love each other deeply, unconditionally and faithfully. A relationship defined by a partnership that values respect, service and commitment. Mistakes have been made but because of them, we are better than we were the day before. We are richly blessed by family and friends who have celebrated with us and cried with us, in sickness and in health.

Now, twenty five years later, we more accurately understand the gravity of the words exchanged on our wedding day. We can’t predict what the future will hold but faithfully we can look forward to what lies ahead. Possibly another exciting twenty five years together, assured that no matter what comes, we can endure.

I do, continues to be spoken silently in daily acts of kindness. Honestly, the words I spoke in September 1985 are the same ones I would say today to the same man who's still my best friend. DZ, for as long as we both shall live, I promise to love, honor and cherish….and of course Be the Change.

Wednesday, September 15, 2010

Laughter and tears

“I will have a regular coffee with a vanilla sugar-free shot” is what I said every Wednesday morning before meeting three wonderful women to share a morning cup of coffee. I looked forward to my time with “The Coffee Ladies” except for Tuesday nights. They often felt a bit short because of the early rise required the following morning. We met once a week at 5:30 a.m. for an hour or two, depending upon varied schedules and the topic of conversation.

At times, I questioned my ability to stay committed to that early hour. Yet, the pearls of wisdom and faithful visions I was given each week not only equipped me for the challenges I was facing but, removed any doubt as to my return the following week. My time with the coffee ladies began shortly after Michael went to heaven. Jessica was finishing high school and preparing for college. I was healing from cancer treatments and devastating grief, somewhat unaware of my desperate need for restoration, so the timing was perfect. In a circle of love around a small table, the importance and value of relationships was, once again, demonstrated to me.

It was not unusual for me to be laughing one minute and crying the next, all while sipping coffee, soaking in graceful insights and valuable truths. Many things spoken by the coffee ladies embrace me daily similar to the way those women did every Wednesday morning. However, one particular statement stands out in my mind. “It is laughter and tears all in one day”. Those words of wisdom dramatically changed the way I grieve the loss of my son.

At the beginning of my grief journey, I tried to compartmentalize my sadness, saving it for only certain times and places, which honestly, made it worse. The grief of loosing a child, attached to the necessity in moving forward without him, is experienced daily. It is impossible to put it into a tidy compartment, separating it from everyday activities. When I learned it’s doable to cry and laugh all in one day, sometimes all in one minute, it opened my heart’s capacity for joy. It taught me that joyful is different than happy. Joyful is a state of being, happy is merely a feeling. Even though I might have cried at one point in the day, I could still remain joyful and have a good rest of the day, despite feeling sad for awhile. Shedding some tears gave my grief an exit, which created new space for other things such as hope and gratitude.

Through laughter and tears, I display the depth of my love for Michael and my whole family. It also, gives others the chance to do the same. Typically, it will lead to a story that brings renewed life to a fading memory. The trusted relationship that developed among the coffee ladies, gave way to the sharing of life experiences and simple, yet profound, wisdom. Created and designed uniquely by a partnership that enhanced our human experiences.

Currently, meeting for coffee early Wednesday mornings doesn’t happen for the coffee ladies. However, the fruit from seeds planted by women changed through faithful discussions around a table, does. It’s the very heart and soul of Be the Change.

Friday, September 10, 2010

A human experience up close and personal

It was late Monday afternoon February 2005, six months after his kidney transplant, when Michael was being admitted to the hospital with pneumonia. It started with a fever the night before. Michael begged me not to take him to the emergency room, even promising to keep a cool towel on his forehead in order to keep the temp down. He said he just wanted to sleep in his own bed that night. Considering he had a follow up appointment already scheduled at the University of Minnesota in the morning, I gave in to his request. That was the last night Michael slept in his bed on 250th street.

His mid morning appointment at the UofM dragged on for hours. We waited and waited for the lab results to confirm what I already knew. Michel had another infection and I could tell it was getting worse as the day wore on. His low grade temp remained steady the night before but now it was climbing. Definitely not the day our family had planned for that particular off school and work Monday. It was suppose to be a short appointment for Michael, lunch at our favorite Chinese restaurant, and then off to the American Cancer Society to pick out my wig. I was preparing myself for chemotherapy, which was the course of treatment following the bilateral mastectomy I just had done. Amidst everything, I was diagnosed with breast cancer in December 2004.

That gloomy Monday in February, we desperately needed nursing care that went beyond the usual admit check list. Not just for Michael, but for me too. After multiple frustrations with the original admit nurse, my husband sought help from another nurse he happened to locate at the nurse’s station. She listened with her heart as we explained our situation. We needed a private room that Michael could navigate with ease in his wheelchair as well as accommodate a cot for me to lie down on. Despite the drain tubes still in place from the mastectomy and pleas from my husband to go home to rest, there was no way I was leaving Michael. Instinctively I knew he was much sicker this time than we were willing to admit to ourselves. Plus, I had promised Michael, long ago, that I would never leave him and I wasn’t going to break that promise now.

The second admit nurse arranged a hospital room that had two beds in it, which allowed me to stay with Michael and take care myself too. I wasn’t able to lift Michael because of my mastectomy so she arranged a male nurse for Michael’s bathroom assistance which meant my husband could go home in the evening to be with our daughter. She became my partner in meeting Michael’s physical and emotional needs, those of our family unit and mine as his Mother and a cancer patient. Unexpectedly, that February hospitalization turned out to be Michael’s last. That second nurse gave me a priceless gift in the way she arranged for me to stay with Michael. Outside the box thinking and top notch medical skills, she displayed with excellence how to nurturethe human experience in a complicated medical scenario.

That exceptional second nurse is one of the many faces behind Be the Change, representing how one person can affect the human experience, completely altering how a patient and family cope with medical trauma. She understood our human need both physically and emotionally, which created a human experience I will never forget. It’s an experience that has often comforted me as I grieve, reaching far beyond the kindness extended in a hospital room.

Be the Change believes sharing stories such as that, allows them to make an impact on the medical community, which will influence the choices and decisions they make. We hope in sharing this story, another family won’t have to look for a second nurse to
Be the Change.

Tuesday, September 7, 2010

The human experience

Clearly defining ways to enhance the human experience in health care is easily avoided. Mainly, because it involves an act of service that’s woven with many layers of human emotion, causing difficulty in knowing where each one stops and starts. Making attempts to explain what the human experience is can be daunting, and discussing it, challenging, because it tends to expose unrefined emotion.

Each of our unique, individual stories writes a different human experience based on the varying paths we walk in life. The human experience for a family involved in a short, one time hospital stay might be very different than the long, multiple hospital stays of a family involved in chronic or rare disease. Appearing to be different, there is a simple truth that is the same for both. Each experience demands a human element that requires mutual respect, understanding and partnership between all parties involved. Be the Change is anchored in that broad spectrum, regardless of how big or small the medical experience, devoted to patients and families seeking high quality health care as well as remaining intact as a family.

I was reminded just recently how difficult it is to integrate emotion with service. A medical provider must maintain a healthy balance between themselves and their work with patients and families. At the same time, they can’t lose sight of the human exchange, which is definitely the intricacy involved in providing the best possible outcome for everyone. A consistent presence and dialog between medical providers, patients and families outside of any medical crisis is how the patient perspective will define and protect the human experience, aiding medical providers in creating a healthy balance not just for themselves but for the patient and family too.

Concepts that speak into the human experience, going beyond mere words, are such things as making outpatient coordinated care a constant priority for every clinic or a daily commitment to consolidating inpatient blood draws for every medical provider. These conceptual ideas are frequently discussed and marketed but far too often don’t consistently match real, tangible action for the patient or even offered as a solution. These are a few of the insights and suggestions that come from personal experience and are a portion of a Be the Change presentation. Our real life experiences attached to medical expertise allows the human experience to impact change and becomes more action than words, providing an outcome we all desire.

Be the Change shows the medical community, my human self and the human qualities of a family that struggled from complicated dynamics of a rare disease. It is emotional, which makes it difficult to talk about, but makes it even more important in the attempt to keep it real, not just a diagnosis, displaying our everyday life experiences which have been altered and changed due to medical experiences. When we are willing to push through the fear of an emotional mess, we inch our way closer to a place where medical experiences are influenced by human experiences, aligned by both the provider and patient perspectives, giving patients and families a real chance in not becoming a statistic.

That combined medical and human experience will be centered by the best of the human heart and mind, giving those who suffered from a lack of humanness, a hero’s capability to Be the Change.

Thursday, September 2, 2010

We love weddings

My family absolutely loves a wedding. We love talking about weddings, planning events associated with weddings and of course, attending them. We are getting ready for a busy wedding season this fall, beginning with a wedding for my nephew and his beautiful bride.

To me, weddings are the epitome of love in the world. It creates a special place for those who are in love, to fall in love all over again. Equally, it lends a perfect opportunity for anyone desiring love, the chance meeting of the person in their dreams. Both scenarios offer a priceless gift to wedding guests that can not be contained in any gift bag.

One of my treasured wedding memories is from a family wedding held in February 2005. That special wedding turned out to be the last one we shared with our son Michael. The wedding was a grand event, not just for the bride and groom, but for Michael. Months of dialysis were over and a successful kidney transplant made him feel like the king of the ball. Guests at the wedding noticed his happiness as well as the numerous cans of Mountain Dew stacked on the table where he was playing cards with his cousins. His comment, “Thank you Auntie Mar for the kidney”, followed by another gulp of pop, made the day complete.

In his wheelchair, he danced the night away with a constant line of beautiful girls around him. For our family, it’s a circle of aunts, uncles and cousins occupying almost every inch of the dance floor, promising to bring out the dancing queen in each one of us. That particular February Saturday night was no exception.

Weddings are just one example of a complicated truth about love. It is absolutely wonderful but at the same time, it’s a risk. Nothing loved is without an element of risk. When a vow is made, either in a wedding ceremony or in your commitment to a child, an eternal bond is made. You and a part of the world are changed by it, making all the risk worth every minute of it.

Allowing me to speak about Be the Change to your group or organization involves some risk too. The risk lies in being impacted and changed by the stories of a boy named Michael who was willing to take risks, even in his wheelchair at a wedding dance. Courage moved him beyond the risk of limitations and discouragements, filling him with hope and possibility as well as everyone watching him.

I might need to brush up on my Cha-Cha Slide skills for the next wedding dance. Many would agree that’s a risk too. Whether you enjoy dancing or not, keep stepping towards the many ways you can Be the Change, and like Michael, don’t be afraid of taking a risk.

Wednesday, September 1, 2010

Vote 4 Hope


The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition

This year Pepsi is giving away millions of dollars to fund good ideas that make the world a better place. We have a good idea that will dramatically help millions of children affected by rare disease, and we can win a grant that will allow us to fund this important effort! Fund Hope For Sick Kids – it’s as easy as a click of a button everyday in the month of Sept. Make A Difference – Vote Today!

Tuesday, August 31, 2010

Taking a drive

Yesterday, I was driving to a Be the Change talk that was scheduled for a group of nursing students at the College of Saint Benedict, when I realized that I use to like to take a drive. I had forgotten that simple fact until I was driving along 94West. The sun was shining, I had my favorite CD playing, and all of a sudden, I remembered how therapeutic a solo drive can be. That recollection isn’t life altering, I admit, but isn’t it odd how in this almost fifty season of life, you recall something once enjoyed in your younger days. It appears as if it was held in storage while life events pushed it aside, just waiting for a re-entry.

Don’t get me wrong, I am still a big fan of “my driver”. A name my daughter fondly refers to her Dad who, very willingly, drives me around. He loves to drive, most often just because it gives him another opportunity to just check things out. As I drove alone on that wide stretch of highway, I was reminded of the uninterrupted time it gives to collect my thoughts, and introspect fully check out some of my own things.

August 30th was a big day, not just because of the awesome opportunity I had to share Be the Change with St. Ben’s nursing program, it was also the anniversary of Michael’s kidney transplant at the University of Minnesota. The unaccompanied drive gave me ample time to marvel in spirit about my sister, Marilyn, who gave us a tremendous gift this day six years ago. It’s a blessing that continues to speak to others. I was very proud and humbled to mention the transplant anniversary date in my talk yesterday, giving those students another powerful example of bold courage.

The tremendous beauty, and peace surrounding The College of Saint Benedict’s campus, helped me centered my thoughts on the drive home. I contemplated a comment my daughter made the day before, as we were discussing the drive to St. Ben’s. “Maybe you’re meant to take the drive alone tomorrow”, she said. That was absolutely true. Somewhere along the freeway I was reminded that the important things in your life are never forgotten. It is also true that we must take the opportunities to be alone, seek the quiet calm within, in order to initiate a recall. You will, no doubt, have time to check a few things out including time to Be the Change.

Friday, August 27, 2010

Packing up stuff

What are you packing up this week?

While shopping the last couple of days, I saw lots of Mom’s with their college bound children picking out towels, sheets and comforters in preparation of the big day when it will all be packed up for the move. Without any permission, my mind was filled with questions that have no answers, still dare to be asked. What would Michael and I be shopping for? Would he be excited to move to college? Since we will never share this college bound ritual, I still find myself in need of packing up stuff.

I decided to pack up stuff that is not tangible but is still heavy to carry. One thing I am packing up is the intricacies about real job experience that doesn’t have a category on a resume. Work experience should include an additional section called life experience, allowing unique life occurrences to add value to a resume, making any mother like me, one of the best investments a company would make.

It’s easy to fantasize about what it would have been like to pursue a career over the last nineteen plus years other than expanding my medical experience portfolio. I have few regrets about that, but what I find frustrating is that having M-O-M be the only initials that appropriately follow my name, aren’t sometimes enough in a society that puts greater value to other, more expansive, titles. Definitely sounds like something I better pack up.

Another thing I am packing up is the confusion that surrounds this season of life. It feels like the things I struggled with years ago as a new mother are some of the very things I am once again struggling with now; they just look different on the outside. Familiarity, connections, routine changes, just to name a few. All of these formative contributors to life, often called something else, would like to steal the confidence that I gained and felt for many years in my full time job as a mother. Closing the box on these feelings will hopefully prevent that from happening any further.

In packing up some stuff, I am choosing to not allow any of my feelings to dictate or diminish all the exciting things that are about to happen this fall. August was certainly the same for many years. Each day filled with a long list of preparations for the new school year. Without even realizing it, I prepared myself as well as my children for a new start each fall. That's still possible even if I didn’t buy any new notebooks on sale this week.

Maybe my routine hasn’t changed as much as my mind would like to think. Packing up stuff, tangible or not, is hard work but when it’s done, a new space opens to Be the Change your heart desires.

Monday, August 23, 2010

Patients are the best consultants

I often remark to the doctors and nurses I encounter that the best consultants or speakers they will ever hire are the patients and families in their waiting rooms.

Patients and their families contain valuable information about the current day-to-day processes used by clinics and hospitals, which is necessary to improve health care quality and safety. Based on what you hear on the news, it’s no surprise that our health care system is in desperate need of some changes. Patient perspective adds value and expertise.

We do not need to reinvent the wheel. We need to take what we know works from real patient and family experiences and allow that to impact our health care system. We can press forward and allow the patient perspective to effectively improve healthcare. Corporate management often makes changes that look and sound effective but are out of touch with what is really required to make a change and provide the best possible outcome for patients and their families, as well as management. We have to get to the point where comment cards in clinics and hospitals are not just a passive communication tool. They should be agenda items on the weekly staff meeting, where it does affect change, leading towards re-education and daily practice improvements.

We, as patients and families, are the missing link in improving health care. Our real life medical experiences and the lessons we learned from them are more valuable than the tips and guidelines highly paid consultants use to suggest improvements to health care systems. The critical difference is when guidelines are supported by the patient perspective, they become infused with a powerful influence that most corporate consultants lack. When the patient perspective partners with the medical perspective, it produces an environment where the human experience and medical experience are one.

Patients and families have suggestions and input on current medical processes because they have already piloted and tested these processes firsthand. Patients and their families live on both sides of health care, in a place where the view is from both sides. The scope is wide, encompassing a life at home that is trying to connect to an unfamiliar way of life in health care. The unique view of patients and families is valuable because they are constantly trying to reconnect home life and medical life, providing an insight unlike any other. With a stronger, more influential patient perspective present in health care education and training, we will easily obtain what has been missing in health care improvements in the past.

Be the Change wants to partner with nurses, doctors, clinics, hospitals, college programs, and any company or organization that believes in putting a new value to the patient perspective. That desire will be the beginning to the many ways each one of us can Be the Change. One person has a dream and when others believe in it, everyone is changed.

Friday, August 20, 2010

Holding down a job

We experienced many changes in our life because of Michael’s progressive rare disease, SIOD. As Michael’s physical changes started occurring, accommodating them became a full time job. It became clear to me that not only did we need to make changes in our home and in our transportation, but in my employment as well in order to support Michael’s rapidly changing physical and emotional needs. Quite honestly, so many changes occurred during those years that it would be impossible to list them all. One thing I knew for sure, despite mounting uncertainty, was that I had to accept constant change as a way of life in order to keep some kind of balanced flow to my family’s life.

One morning I was explaining to Michael that the following week I was going to start another new job that would allow me to be at home more. Seated in his wheelchair, he looked up at me and said, “Mom, are you having trouble holding down a job?” You can about imagine what thoughts were running through my head after that statement! All I could do was laugh, hug him and reassure him that was definitely not the case. The real truth- I was changing jobs again to be more readily available to him as his body was failing and his day to day life was becoming more difficult.

Many parents are packing up their sons and daughters this week recounting many of those same types of decisions made with deep parental love. Choices that have required great sacrifice yet were made somewhat effortless simply because parents love their children and want to provide an ease to certain areas of their life.

Lots of these parents are now entering into a new season of life, often referred to as “the empty nest”. What appears to be a new season for mom and dad is really just going back to where they began. Will they remember what it was like? They have the opportunity, maybe for the first time in almost eighteen years, to apply a fresh new focus to their life. Inadvertently, lending confidence to the many changes occurring for their children, sparking renewal in everyone.

As a mother, it seems as if it was easier to make changes that were centered on a need for one of my children. Now it is much more difficult to make when it is centered on me. Walking on the bumpy road of grief I am learning that by placing a new value on the ways I take care of myself, I teach others to do the same. It's a daily search for a healthy balance between meeting the needs of others and my own, completely surrounded by grace. Seeking that balance helps me wear the changes I am experiencing in my own type of empty nest season. Addressing my needs first allows me to give my best self to those around me, equipping each of us with what is required to keep moving forward even though changes have occurred. It’s a balanced order I admit is not easy to change as a mother, but is necessary especially as children leave the nest.

In the past, I might have had some trouble holding down a job in Michael's view. But I can honestly say, it was worth it, any mother would. My family often says that we don’t like change, but now we say, Be the Change.

Tuesday, August 17, 2010

RDF Interview

Last week I was interviewed by a research assistant from the Rare Disease Foundation located in Vancouver, Canada. We talked about our journey as a family with Michael and his rare disease, SIOD, including the silent complications that are heavy burdens but often only recognized by families with chronic illness. All of which makes the dynamics of family life coupled with illness even more difficult. There were questions about my marriage to the same man for almost twenty five years despite tragic incidents. She asked about maintaining a family unit, as well as the underlying affects on siblings and extended family. She was surprised to hear about the multiple levels of support we had during Michael’s illness, his death and still have in our life. With most of the families she has talked to that is typically not the case, once again making our situation unique.

The interview gave me another opportunity to boast about our family and friends. We could not have done what we needed to do for Michael and for Jessica without the loving hands and feet of faithful family and friends. Their commitment to us was unfailing, sustaining us during the unthinkable. Often we ask ourselves, how is it possible to repay so many extreme acts of love and kindness. Asking that question over and over again revealed to us the importance of receiving with as much grace as giving. Not an easy task for two people who like to have the scales of give and take evenly balanced. During those years of exceptional generosity in almost every area of our life, we realized it was in our receiving that our family and friends became the answer to our prayers. It was purposeful service to a family with chronic illness that they themselves didn’t own but yet had a desire to share it with us and their beloved, Michael.

A wise woman once gave me this quote by W. Somerset Maugham, “We are not the same persons this year as last; nor are those we love. It is a happy chance if we, changing, continue to love a changed person.” For years now, I have carried that quote with me because loving a changed person is a true blessing in our life. Michael’s rare disease changed us, altering our course. Inevitably, changing the way we see things. The countless ways family and friends continue to love us unconditionally and unselfishly while we are changing, just as they did from the beginning of our journey, is yet another level of kindness and support being offered to us. That love, on its own, has changed us. People serving others in varying degrees, with no expectation of repayment in any way, is the true meaning of love with the word itself not even spoke.

The interview ended with me saying, “The patient perspective needs a face and a voice.” The changed person in me will be that, representing Michael’s courageous spirit in our efforts. Be the Change represents patients partnering with the medical community finding new ways to provide honest input, giving a voice to every child and family that faces what we faced. Be the Change will stand in the gap for families that don’t have the circle of support that we have.

Service is the center of Be the Change with our family and friends as the models. They represent the high quality relationships we need in health care. I trust and believe that powerful experiences will continue to flow from this network of extraordinary family and friends. Hopefully, our gratefulness for what was and what is will always be reflected in our new journey where, together, we will Be the Change.

Thursday, August 12, 2010

Michael Zimanske Golf Tournament

Monday August 16, 2010 Monticello Country Club will host the 4th annual Michael Zimanske Golf Tournament sponsored by Roll With It. This fundraising event is very special to the Zimanske family as is everyone involved with Roll With It. Last years event raised $7100 which goes directly to supporting sports and recreation activities for children and adults with physical disabilities.

When Michael was about nine years old he started loosing his ability to walk because of the rare disease SIOD. During the time he was transitioning into a wheelchair, we started looking into what kind of adaptive sports were available for him. Even though he was loosing the ability to walk, he wasn’t willing to give up his love for competitive sports. The question then became; how can my child, with special needs, play sports now? Through a phone call to the Courage Center we found out about a wheelchair basketball team forming in the south metro called the MN Royals. With them we experienced wheelchair basketball for the first time and a whole new world opened up. Soon after, we met Heidi Schwichtenberg and her family. All of these organizations, including Roll With It, taught us that there is never a reason why a child with special needs can’t participate in sports.

Heidi’s love and commitment to children and adults with disabilities is absolutely amazing. It is consistently displayed in her efforts with Roll With It. Heidi’s basketball ability on the court and Michael’s need for speed in any sport made them instant friends. Heidi invited Michael to promote Roll With It events with her, sparking a unique relationship beyond the court. Sharing a love for basketball and the MN Timberwolves, they even attended some games together because of Heidi’s kindness and generosity. Heidi’s involvement with the Courage Center wheelchair basketball and Michael as a player for the MN Royals wheelchair basketball team, gave them many opportunities to also meet on the court.

If you have never attended a wheelchair basketball game or any adapted sporting event I encourage you to do so. I assure you that once you attend an adaptive game you will never be the same again. These children and adults are incredible, exhibiting not just outstanding athletic abilities, but a sense of pride and commitment that it is unlike anything I have ever seen before. When you give some thought to the challenges they face in everyday life, including recreational activity, it makes you appreciate their abilities even more. It might appear that a wheelchair athlete weaves without effort on the basketball court, until you see their hands bleeding at the end of the game. That’s only one of the many valuable lessons displayed in these types of adapted sports. It promises to alter your perspective as well as the way you view any sporting event after that.

On behalf of Roll With It, the Zimanske family would like to invite you to participate in the 4th annual Michael Zimanske Golf Tournament on Monday August 16, 2010. I promise that any amount of time or money you give to this worthy cause will be put to very, very good use. Make sure to check out the Roll With It website and see the extraordinary things that are happening in adaptive sports.

People such as Heidi and her family along with all the athletes involved with Roll With It have changed my life. They are real hero’s which inspire me to be better and do better just because I know them. The Zimanske family is extremely grateful to Roll With It in honoring Michael’s memory by organizing this golf tournament. It allows his competitive spirit to live among us, challenging more people to Be the Change.

Monday, August 9, 2010

Mother of a Princess

Surely every mother would agree, that at one time or another, their children believed they were royalty therefore excluding them from the mundane daily tasks and responsibilities required of a busy home. However, in my situation it’s me that believes I am the mother of not only a prince but a princess.

Being the mother of a child with special needs automatically places you in a category all its own. Taking that one step further, puts the focus on the siblings of a child with special needs. I have witnessed extreme acts of kindness simply by walking in the arena of special needs children and their siblings. At the beginning of our journey with Michael’s special needs I found myself staring at children with special needs as they interacted with their siblings. My heart was heavy just watching that scenario and thinking that would soon be us. But now, I stand in awe of siblings caring for their brothers or sisters with special needs. It humbles me in ways I can hardly describe. The sibling relationship is unique anyway but when special needs are involved, that relationship goes to another level of love and compassion which is exceptional.

Currently in my home lives a princess, my daughter Jessica. She quietly yet bravely walks out the grief and sadness she owns because her brother died from a horrible disease. I can see how the years of loving and caring for him has shaped her life. I am reminded of something my parish priest shared with me when Jessica was six months old as my Mom was dying from cancer. He said that at some point I would look back at the illness and death experiences I shared with my Mom as a blessing.

From this vantage point, I can honestly say that he was absolutely right. I am grateful for the wisdom he shared with me that day and the courage he displayed by speaking the truth, even if I wasn’t able to completely understand it at the time. A seed was planted by those simple words of truth and was cultivated in my journey through life. I was blessed twenty two years ago by the wisdom of my pastor and now I am blessed again by the opportunity to pass on that truth to my daughter.

When we choose to walk through the darkness of illness and death it gives way to a resurrection that in part, is only possible because of the suffering and sacrifice you personally experience. It makes me sad thinking about what Jessica physically, emotionally and visually had to experience with Michael. But in faith, I have come to realize some of that sadness is actually my limited worldly view of what is a blessing in disguise.

Many with royal qualities live among us, especially in the world of special medical needs. In the role of parent it’s important that we allow our children to experience both the good and bad in life even though it is difficult to let it become a part of their reality. What we might consider to be a bad experience could actually turn out to be a divine experience with a flow of blessings straight from the King of all prince and princess.

I consider being the Mother of both a prince and a princess one of my most profound blessings. Because of the princess I found the courage to Be the Change.

Friday, August 6, 2010

The Patient Perspective

Can we really reshape the relationship between patients, their families and health care providers and improve the quality of health care? My quick and simple answer is definitely, yes.

I sincerely believe that we as patients and families of patients hold the key to a vault of valuable information that will not only improve health care relationships but also increase patient safety and be done in an affordable way. We need to rid ourselves of complicated processes that only lead to drawn out meetings, redefined mission statements and overflowing recycle bins.

The future of quality health care lies in learning how to take the patients perspective, which has been defined by hard earned experiences, and line them up with the expertise of medical providers. Integrating these two vials of wisdom, placing them side by side, creates the power behind real change. This has the capacity to form a true partnership where both the patient and provider agenda is served and valued.

Be the Change can pave a new road to better health care. It is possible to strengthen the relationship that currently exists between patients, families and medical providers. My family’s health care experience especially in my son Michael’s rare disease can often be more valuable than any degree or certification. Embracing that truth will be the driving force behind redefining relationships between patients, families and medical providers.

It’s no secret that the way to strengthen a relationship is to improve the methods in which you communicate. For instance, patients and their families are constantly frustrated in finding fair and consistent ways to communicate information between health care providers and patients. It should not be the exception but the norm to feel both physically and emotionally cared for by the way medical providers communicate with us. This feeling is achieved in a number of ways, but establishing a reasonable length of time a patient waits for information would be a good start. When a medical provider adheres to the established guidelines, the patient will naturally learn to trust the process. That alone will increase the outcome of the medical experience, strengthen the patient/provider relationship and ultimately shape a more human experience.

When I speak on behalf of patients and families experiences for Be the Change, I talk about the ways a patient perspective can impact health care. The next logical step is to incorporate a patient’s perspective and wisdom into existing health care manuals. The insights gleaned from a patient’s own experiences, coupled with clinical wisdom, will provide a profound teachable component on the value of the patient perspective. We will maintain the value in the current clinical logic, making it even more influential because of the enhanced patient perspective connection.

This is just the beginning of how the patient perspective can impact the future of health care which allows everyone to
Be the Change we all desire.

Monday, August 2, 2010

Nineteen years later......

I keep thinking about how impossible it seems that it has been nineteen years since my son Michael was born. But when I see my nieces and nephews with babies of their own I am quickly reminded of just how fast time rushes by. We were up north this past weekend enjoying a fun time with family. Now it’s my nieces and nephews turn to talk about their birth experiences, the latest and greatest trends in baby equipment as well as show us "older mothers" what is the correct way to lay down a sleeping baby.

Suddenly, we aren't the only ones going to bed early due to complete exhaustion from running around with kids. When did my nieces and nephews inherit what I considered to be my life for so many years only to find myself the new generation of Aunties? When did the generational gap narrow and completely shift over?

So nineteen years later, I realize......
I carry a cell phone everywhere
I text every now and then LOL
I get more emails then phone calls
I get up early because I can’t sleep past 6am
I can’t drink pop past 8pm without a restless nights sleep
I'm even more thankful for my parents, sisters, brothers
and good friends
I get teary watching my nieces/nephews grow into young adults
I am profoundly grateful to be a mother
I am still in awe of my daughter Jessica
I wonder how naughty Michael would be at this age
I know that at age 19 Michael would have more than likely looked just like the handsome guy I knew back in 1979 – his Dad

Nineteen years later, I can humbly say I walk on a path of blessings. That truth confidently allows all sorts of changes to take me to where I was created to Be the Change. I pray that nineteen years from now people will say that I put it all out there, laid it all on the line, and that Be the Change is a concept no one can be without.

Thursday, July 29, 2010

Happy Birthday Michael!

Michael’s 19th birthday is this Sunday, August 1st. I ask myself, as each parent does every year on their child’s birthday, “Where does the time go?” Yet for me that question takes on altered meaning when some days it’s as if I can actually hear the minutes ticking away without my fun-loving Michael.

Ever since Michael went to heaven in 2005, I haven't planned an August birthday party. But with strength greater than my own, I still choose to celebrate one of the happiest days of my life; the day Michael was born.

So come with me now down memory lane.....

It was the usual heat of summer and I was on my fourth week of bed rest with Michael tucked safely inside of me. Jessica could finally take a break from her daily announcement to who ever was in ear shot of “Mom’s throwing up again”. That daily ritual was now being replaced by very high blood pressure giving way to total bed rest, joining the previous condition of Placenta Previa which was diagnosed early on in my pregnancy. You can about imagine how much fun I was having with all that by the eight month of my summer pregnancy! Not to mention the very cute three year old blonde toddler girl that was also looking for her own summer of fun. None the less I loved being a Mother and the idea of another baby joining our family in spite of this kind of pregnancy was still exciting. I absolutely adore babies and everything about them.

It was suppose to be a typical follow up OB appointment on August 1, 1991 which in my case included a repeat ultrasound. It was the same type of appointment I had been having the last four weeks since the bed rest began. My husband had been coming with me to the other appointments but this week I insisted that I was just fine going myself. To make a very long story short, my appointment on August 1st did not go the way I expected and it definitely took us all by surprise. Early that afternoon, a little baby boy named Michael was born emergency C-section at Fairview Ridges Hospital in Burnsville after complications were found during the ultrasound that morning.

Michael was small but perfect complete with ten fingers and ten toes. Even on day one he stunned the emergency team of doctors on stand-by who were anticipating a newborn transfer to Children’s Hospital in Minneapolis. Michael was doing fine and a transfer was never needed. That day was the first time we met our wonderful pediatrician, Dr Baker. Years later he admitted to me that Michael was one of the first patients he saw as a new doctor on call that day.

It was the beginning of a life for our family that would change us forever. I see now all the seeds that were planted in that birth experience, gracefully preparing us for what lied ahead. Once again I was humbled and blessed beyond the capacity of my earthly imagination. I thought I was going to teach my son everything he needed to know about life but instead he taught me.

Happy Birthday Michael!! Until we meet again one day I will continue what you started; Be the Change.

Monday, July 26, 2010

What do you do?

It seems as if I have been asked the question, "What do you do?" a lot lately.

Therefore, in my blog today, I want to more clearly define what I hope to do through Be the Change. Who knows, might even be helpful for myself!

In my efforts with Be the Change, I want to identify simple yet effective ways to reshape and strengthen the relationship between patient, family and medical providers. By it, creating a more real and honest exchange of information, with the patient at the center, improving the way health care is received and delivered everyday. I believe this is possible by making patient perspective additions to education, training and day to day operations which involve all medical staff from housekeeping to CEO.

This can be accomplished in a number of ways, but I think it begins with our own patient and family health care experiences. These valuable, hard-earned lessons gleaned from personal interactions with health care providers, are the heart of what is considered the patient perspective and should be integrated into health care curriculum and processes. It then has the ability to affect how health care providers are currently being taught to care for patients and family’s, which in my opinion is far too clinical.

Be the Change wants to go beyond just talking about being the change. The last few months I have seen the importance of Be the Change talks and presentations and consider them to be a very valuable asset. However, I desire to make a long lasting change in the medical community regarding the way patients, family’s and providers communicate. I have come to realize that the value of the patient perspective needs to be in print in addition to a verbal presence in order to accomplish that long lasting affect.

Through Be the Change and the patient perspective, the human experience will hold equal value to the medical experience. The whole family will be cared for in the way a patient and provider communicate. Patient and provider will hold equal weight in every choice and decision that is made from small decisions such as appointment times to larger ones like surgical options. Be the Change looks forward to the day when a patient knows ALL of the choices that are available in any given situation and not just some times, but every time. ALL the variables will be laid out for an informed decision to be made with patient and provider working together as partners, each bringing their own unique experiences and wisdom into the decision. That is where the best possible outcome will be achieved.

Wow! Be the Change has lots of work to do.

Thursday, July 22, 2010

A prompt response please

I was reminded this week of the extreme importance of a prompt response regarding test results and/or a call from a nurse or doctor. Is it too much to ask, especially in this day and age of immediate response technology, that a patient wait more than 24 hours for health information, critical or not?

We as patients need to be direct and crystal clear with our medical providers as to what they mean when they say “I will get back to you”. Does that mean this afternoon, tomorrow, the end of the week or sad to say in some cases, when they get back from vacation? I completely support any medical providers attempt to get adequate rest and relaxation which might include a vacation. We want them to be at their optimum, but not at the expense of patients waiting for a return call wondering about important medical information.

Respect of a medical provider’s time is essential since they have an enormous job to perform. However respect of patient’s time is just as essential. Both roles have enormity to them requiring mutual respect that flows both ways. I am more than willing to respect my nurse and doctor and the time it takes to do their job. However, I am simply asking them to respect me back and the fact that I too perform an important job in my life. We need to come to a place of mutual understanding with regards to the delivery of health care information.

Allow me to give you some hard earned tips for the next time you might be waiting for some information from a nurse or doctor and someone says, “We will get back to you or someone will get back to you”.

-Confirm if the information will be given by a phone call or a letter
-Confirm who will be calling you back and will it be the nurse or the doctor
-Confirm the exact date and approximate time you can expect a call back
-Confirm if the person in charge of your information will be out of the office the next few days and if so will you have to wait for your information while they are out
-Clarify your expectations with your provider and if they can’t meet them ask to be referred to someone who can meet your expectations

It is important to be kind and respectful in your conversation. Make every attempt to keep your voice calm as you are communicating honestly about what you expect to happen. Don’t be afraid to display your humanness in your attempt to obtain the best possible outcome. In my experiences with nurses and doctors it was when I was willing to share a human part of myself that it allowed them to do the same. In being clear and direct about what I considered necessary in a medical as well as a human relationship with my medical providers, I was then able to be not only a patient but also a mother, a wife, etc. The opportunity for a human experience inside the medical one was present allowing both of us, patient and provider, to serve and stay committed to each of our agendas. Through that type of relationship we will raise the bar, improving the quality of health care received and delivered.

It's true that most often we can’t change what happens to us, but we can Be the Change while it’s happening.