June 2014

It’s been over six months since I last posted to this blog and I’d still like to scream I’M STILL HERE! But I can’t because MSA has taken my voice away.

A lot has happened: On February 9th,Max Chandler Kotecki arrived into the world two months early and happy to report he is developing beautifully.

Here’s a photograph I never thought I would make an appearance in.

I published my memoirs, Reflections, sold through Amazon and. receiving great reviews. Check it out. Even better, buy one.

Only $12.00 Paperback, $9.99 Kindle.

As for me, as expected, I’ve definitely had progression. Think Stephen Hawking. My attitude, If he can did do this, so can i. I’m focusing on what I can control in my world,(my mind is intact), the positives in life, my family, and the smiles on my grandsons faces.Image

The world of neurodegenerative disease is still going strong – please consider a donation.

My Memoirs

I am proud to announce that my memoirs have been published and are available on Amazon.
book photo

October 2013

            The most beautiful event occurred September 20th:  My grandson, Noah Mark, was born to his proud parents, Jeremy and Jennifer.  Holding his five and a half pound body definitely brought back memories of the first few days of Jeremy, Emily, and David’s life journey.  I can remember holding them and looking at their faces with amazement wondering about their potential and the thousands of experiences that would shape their future.  

            Who would they become?  What would they like?  Who would they marry? What challenges would they face?  These were just the beginning questions that I pondered as I held each one at the starting line of life. Almost 30 years have passed since that original moment and I’m proud to say that I’m overly impressed with the individuals they have become.  They have been a great source of joy in my life.

             As Noah slept in my arms on his ninth day, I realized he too was at the beginning of his journey and I wondered about the answers to the same questions. I know he’s in good, loving hands.  I’m excited for him.

              Let’s see what else?  Two things: The government shut down and MSA. A shutdown emphasizes some “must-have” qualities we should demand of our elected officials.   Intelligence, maturity, mindfulness, and honesty are critical qualities for the job.  I can’t imagine an American corporation would stop selling their product and temporarily shut down if  senior management had a disagreement. 

              Republican Congressman Eric Cantor talked about fairness. His father suffers from MSA but he refuses to advocate for support for funding the National Institute of Health, (NIH), the main source for a cure, because during the shutdown, it wouldn’t be fair.  What a good son!                       

               Democratic Senator Harry Reid also refused to advocate for funding for NIH during the shutdown because he wants to be fair and he does not put one group ahead of another. You’ve got to be kidding me. I think terminally ill people certainly deserve to be a higher priority. Fairness? Stop the nonsense.                                     

                As for MSA, things continue to progress and not enough research is being done.  If you perform a search at www.clinicaltrials.gov for open research studies for MSA, you will find 84.  If you search the same for cancer, there are over 35,000.  More help is needed.

                 So if you’re looking for a charity to support, please consider my fundraising (www.markfreifeld.com) effort for MSA research taking place at The Mayo Clinic.

August 2013 – an update

August 2013

            Hello.  I’m coming up on the two-year anniversary from diagnosis and first I’d like to yell, ”I’M STILL HERE!” Although, some days I have to admit, I’m surprised. When I was first diagnosed at the Mayo Clinic in October 2011, I joined a drug clinical trial that held some hope of stopping progression of MSA (turned out, it did not work.  I hate when that happens).  One of the qualifications to be in the trial was that you had to have a life expectancy of at least three years. so, statistically, I’ve got more time.

            When you’re healthy, the primary commodity you’re constantly dealing with is money. When you’re terminally ill, the primary commodity you’re constantly dealing with is time.  Comparatively, money is unlimited and generally one always has the opportunity to find ways to make more money. I can’t generate more time and having MSA makes me more mindful of how I spend my time.   I truly cherish my moments with Julia, Jeremy, Emily, David, James, and Jennifer.

               Time with friends is also precious and our home remains a busy place as I have visitors practically everyday. My brother Richard and his wife Sarah recently  visited from California.

               One question I’m often asked is, “How do you cope with this disease?”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  I’m not freaking out, although I can definitely understand that response.  Actually, I completely understand, how someone could feel angry, depressed, betrayed, frightened, alone, and every other negative emotion when faced with this disease. But that’s not how I feel.   I have sad or dark moments but they pass and I focus on today and memories of the past.  My childhood, meeting Julia, our wedding and 6-week honeymoon in Europe, the births of our three children, the thousands of experiences we shared during their childhood, our b’nai mitzvahs, ours vacations, Julia’s art, Julia’s cooking, Emily’s cooking, Jeremy’s music, David’s social prowess, laughing, Emily’s wedding, Jeremy’s wedding, being with friends, my career, love, and life overall.  It’s a long list and it has truly been a joy and I am thankful.  This is my focus and gives me the power to cope and deal with this disease. I think clearly and still laugh (although some days I’m not sure what’s so funny). 

               If I were 90, this disease would be less tragic because I would be considered old and at the end of my life.  Although I’m only in my late 50s, I may be young in years; but I feel my particular body has somehow reached old aged quickly. The statement, you never know what tomorrow will bring, may sound a bit cliché, but this disease is a perfect example. The cause of MSA is unknown, strikes people in their mid-50s, and seems to be random.  It could happen to anyone.

                One thing I’ve been particularly struck by is the generosity of others.  I am honored to have my circle of friends.  They have come by to watch  a movie, bring lunch, give words of encouragement, laugh, and simply just hang with me.          

                 So what else to do with my time? A cure for MSA requires medical research which in turn requires money. I’ve decided to try and raise some more money for MSA research at the Mayo Clinic. The desperately needed medical research that seeks a cure typically is not funded by the pharmaceutical industry because there are too few people with MSA to provide enough profit incentive.  Instead, funding for research comes from the federal government funding of the National Institute of Health (NIH) or private donations.  Currently, the federal NIH grant program has been adversely affected by the government sequester with the NIH announcing 700 fewer research grants being issued as a result. Thus, private donations at this time are even more important.

                  My goal is to contribute to the effort in finding a cure for MSA and I need your help. To assist in this fund raising effort, my family started a fund raising and MSA awareness drive and thus far we have raised $35,000 from private individuals for research at the Mayo Clinic in Rochester, Minnesota.  I’ve decided to support The Mayo Clinic because it is a leading MSA research center under the direction of Dr. Phillip Low.

                  I don’t like asking people to donate.  It’s uncomfortable.  But, I want to keep leading neuroscientists focused on finding a solution to MSA. So if you’re looking for a cause to support, consider MSA research and go to www.markfreifeld.com to donate.

Thank you.

My daughter’s story about the impact of MSA

My daughter’s story about the impact of MSA

My MSA journey

Well its been 15 months since my MSA diagnosis.  How am I doing?  Unfortunately, the disease has progressed manifested by the most pronounced symptoms of an inability to walk plus my speech is now being affected.  However, I must say despite the constant challenges of this disease, I am coping pretty well. I am support by a loving family and supportive network of friends. I try to maintain a positive attitude because the alternative is unacceptable to me. I can’t control MSA, but I can control my response to it.

I also want to resume fund raising efforts. I want to remain active in the cause and continue to raise money for MSA research  I want to make sure that smart neuroscientists remain motivated to find solutions to neurodegenerative conditions like MSA.  Throughout my journey, it was common for me to hear doctors say “There is no cure for MSA.”

That is an unacceptable answer to me because it limits discovery, quiets curiosity, and highlights hopelessness.  The answer should be “There is no cure for MSA – Yet.  But one day there will be.”

That answer keeps curiosity and hope alive. I don’t know when that day will arrive, but I have confidence one day MSA will be an incurable disease of the past like certain cancers, smallpox, and bacterial infections. Discovery of new breakthrough knowledge should be the obstacle to a cure, not money. Thus far, approximately $35,000.00 has been raised.  I know money raised today will probably not help me, but perhaps it will help people with MSA in the future. This disease needs to be eradicated from human beings.

I encourage you to donate and contact your network of friends, family, acquaintances, and co-workers.   We can’t wait for someone famous to contract MSA and give it a name and public face.  Write your congressional representative or senator to support funding of medical research at NIH. Given today’s fiscal budget stress, NIH funding is always at risk of being cut at the very time when it needs to be increased.  Imagine one day, someone will present to their doctor with MSA symptoms, and their doctor will respond, “This disease used to be incurable and a death sentence, but today we have a solution.”  I dream about that day. The time is now.

Vote for me!

I have submitted an application to participate in the 4th annual Mayo Clinic Healthcare Conference on Social Media. They are offering three scholarships for people to attend and participate. Winners will be selected not only by a panel, but also through a combination of Facebook likes and comments on my essay. Please read my essay, ‘like’ it on Facebook and vote for me!

Click here to vote: http://socialmedia.mayoclinic.org/2012/07/17/mark-f-scholarship-contest-essay/

After reading the essay, vote for me by clicking ‘Like’at the bottom of the essay.  Thank you

July 16, 2012

I’m excited to announce we’ve raised over $20,000  for MSA research. We want to continue to raise funds for research and awareness. Help the MSA community raise awareness about this disease by signing this petition and passing it on to your friends and family. The goal is get 1,000 signatures or more.  Sign the petition here!

June 14, 2012

I am deeply touched at the response we’ve received.  The donations, words of support and encouragement, love and kindness have been overwhelming and I am grateful.  Some of the most striking responses were from people who have known friends or family members who have struggled with MSA.  This battle has led me on a journey that I never thought I would encounter.  Two years ago, I had a battle with cancer, received treatment, and was cured.  MSA is more challenging because it is rare and at this time, there is no cure.  By comparison, there are approximately 12 million people in the U.S. battling cancer at any given time 1; for MSA the number of people at any given time is approximately 50,000.  Thus, the resources for cancer are tremendous while MSA and other rare diseases struggle for solutions.  Money is one of the obstacles to discovery and private sector financing is critical to funding research at medical insitutions like the Mayo Clinic.  Your donation can truly be lifesaving.

Many people have asked how I am doing.  I naively thought these types of struggles only happened to other people but not to me.  Wrong.  MSA has been dropped in my lap and I have to live with it.  It’s truly a struggle and a difficult disease.  However, my wife Julia, my love, soul mate and best friend, helps me find the power to fight this battle.  My adult children, Jeremy, Emily, and David, and their spouses, Jennifer and James, give me extra power.  And my network of friends provide additional support to lean on.    But since illness is part of life, MSA is the challenge I’m facing and the love and support I have received is therapeutic and reminds me I am not alone.

  1. American  Cancer Society, http://www.cancer.org

Mark’s letter to the editor

Health care machine must pay more heed to patients
Published in The News and Observer, Dec. 18, 2011

Your series “Hearts and Minds” did a great job spotlighting the business of health care. I spent 25 years in that business as a medical group administrator, physician practice management consultant and executive recruiter for health care professionals. More recently I spent a lot of time as a patient: I fought cancer and survived and currently I am battling a rare neurological condition. In reading the series, I found myself asking, “What about the patient?” Although patients receive billions of dollars of services, their side of the story is conspicuously absent in this drama.

Mayo Clinic founder William J. Mayo, M.D., stated “The best interest of the patient is the only interest to be considered.” This does not appear to be the philosophy of the executives at WakeMed and UNC Health Care who were featured in Mandy Locke’s investigative series.

Locke did a superb job of describing the power struggles between physicians, hospital administrators, hospital board members, state officials and community members. But where is the patient in the discussion? Are patients better off with less competition among hospitals or doctors? Will outcomes be better or will the level of population health improve if WakeMed or UNC controls the market?

Bill Roper, head of UNC Health Care, and Bill Atkinson, his counterpart at WakeMed, may feel that the more they control the market the better they can influence quality of care, but health care is practiced one patient at a time. Since we’re all future potential patients, while this debate takes place we need to ask ourselves, “What do we want our local health care system to look like and what should it deliver?”

A health care executive from 25 years ago explained to me that the “The great U.S. health care financial machine is made up of large turning gears” consisting of doctors, hospitals, pharmaceutical and insurance companies and the government. He then crudely described the patients as the “grease” that make the wheels turn. My concern is that the patient’s status has not changed much, and Mayo’s philosophy doesn’t reach from Rochester, Minn., to Wake County.

As a patient, I want the choice to select the hospital and doctor who best fit my needs for the best result. After all, patients are the consumers of health care services. I am not interested in a one-size-fits-all approach with one institution controlling the market and controlling the way my medical care is delivered. Health care reform opens the door to change. Hopefully, that change will evolve into something better for the overall care of the population and better outcomes for the sick, not just more profits and market share for the business players in the system.

Ideally, I would prefer a local system that begins with a goal of better health for the population at a lower cost and an infrastructure built around that goal. This requires all participants in the system to work together for a common goal of illness prevention and better health outcomes. Your series seems to imply that the current struggle between UNC and WakeMed is primarily focused on power and executive egos. Let’s focus more on the outcomes, better health and lower cost structure in health care reform and let’s clean the grease off the patient.

Mark Freifeld