The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info
Daniel with his friends

Daniel with his friends

I wrote a blog a few weeks ago about my Seattle friend, Daniel Mulhaney, who is slowly fading away with the terrible illness ALS. As you probably have heard, the ALS Foundation had a public relations coup when they got thousands of people worldwide, including many business, government, and entertainment celebrities, to take the “Ice Bucket Challenge” and raise awareness and/or contribute money for research. Many millions were raised, more than ever before.

Daniel did his own private fundraising in the Seattle area and with friends worldwide for support of “Team Daniel Lives” and a charity walk that was held a few days ago. I am happy to report it was a huge success, and the team raised over $27,000. Esther and I were happy to contribute and enlist our family and friends to help.

Daniel, a once vibrant IT professional, is down with the disease but surely not out. He can no longer talk, except through a text-to-speech device. He cannot use his right hand (he is right handed), and he is fed through a feeding tube in his stomach. I haven’t seen him in a couple of months. It is now possible walking is difficult. But all that and nothing has killed Daniel’s positive human spirit. He is an inspiration.

Daniel's ALS fundraising walk

Daniel’s ALS fundraising walk

As Daniel said in an email to all of us the other day in expressing his delight at the fundraising success and show of support, “My heart and soul are singing and at peace.”

Here are some photos that Daniel included in his message. Esther and I were sorry we couldn’t walk with them in person. But these days in our world of global instantaneous communication, isn’t it great that we can not only keep in touch, but also support each other emotionally and financially as we fight serious illness?

I welcome your comments.

Wishing you and your family the best of health!

Andrew

Jessica and Esteban Izquierdo

Jessica and Esteban Izquierdo talking about their cancer journey

The other day, Patient Power producer Tamara Lobban-Jones gave us a terrific video love story. It’s the story of newlyweds Jessica and Esteban Izquierdo and how Jessica was diagnosed with non-Hodgkin lymphoma just weeks before their wedding. Jessica and Esteban had been sweethearts for years, and this was a blow they never expected. But the power of love is a very strong anti-cancer medicine. Not always strong enough but always to the good. And so it was with Jessica and Esteban, formerly of Ecuador and now living in the U.S. As the video story explains, they faced the shock of cancer directly. They sought the care of a top specialist, began treatment promptly, and began to put their lives back together—living with cancer in remission. And they, of course, had their wedding with the support of a huge crowd of family and friends.

Admittedly, not every relationship can withstand a cancer diagnosis. And certainly among young couples looking forward to a long life together, this can be devastating. But I am happy to tell you Jessica and Esteban say they are stronger because of it, and I have seen that in my own life with Esther, too. If we face cancer together with the ones we love and who love us and if we communicate openly and get the additional support we need, we have the best chance of not letting the cancer define us or beat us.

Esther Schorr

Esther Schorr sharing advice for caregivers

Recently, we produced a town meeting for CLL patients and caregivers in Seattle, and Esther was a panelist. She spoke openly about how she coped, as a spouse, with my diagnosis of chronic lymphocytic leukemia (CLL) and how she has continued to support me as the patient. Please watch her story, too.

We are very devoted to telling the stories of real people facing cancer, together with people who care, their “support team.” We will do much more of this in the months at events, online and even on your smartphone. Stay tuned. In the meantime, let the message of our newlyweds, Jessica and Esteban, sink in. They express how they have pushed cancer into the deep background of a full life and how we might do that, too. It’s great advice.

Wishing you and your family the best of health!

Andrew

powerful patient

A vocal patient at a recent Patient Power event

All of us want to be in control of our lives. We decide when we eat, when we sleep, and we pick our friends. When we get sick, why should we give up control? Is it because the doctor knows best? What if he or she is wrong or just behind the times? My view, for cancer patients for sure, is that we can’t afford for our doctor to be “wrong.” And apparently an increasing number of other patients agree with me, as born out by the results of our Patient Power Summer Survey. I am delighted to tell you that 850 people affected by cancer today, the vast majority of them patients themselves, recently took the time to answer our 33-question survey. No one was paid, and there was no outside sponsor. The survey was an effort of Patient Power and our research partner, Aptel Research. Patients answered to help us help them with our plans for more precise education and empowerment. We’ve sorted the data to zero-in first on 700 people who are in the U.S. And the results show how the Internet, and specifically PatientPower.info and other credible social media sites where patients connect with experts and patients, is changing the cancer doctor-patient relationship. While there may be some doctors who still tell their patients to avoid going on the Internet, many patients, fortunately, have a mind of their own, and they are finding useful information. Some key findings:

  • 90% of survey respondents say they have discussed what they learned online with their doctor
  • 19% said what they learned online added new options to the discussion
  • 15% said that discussion led to a change in their treatment plan
  • 43% said they felt more confident in discussions with their doctor because of the knowledge they had gained online

Of course, as a patient advocate, I am thrilled. I KNOW I have received better care for two cancers, CLL and myelofibrosis, because I’ve become an informed, savvy patient and because I’ve asked questions. I have received personalized cancer care because I have advocated for myself, and I am convinced my health is better because of it. I am also thrilled, of course, that survey respondents ranked PatientPower.info, by far, as their #1 online resource with 80% of them searching for new information at least weekly. What is happening today is that more patients are going the extra mile and learning about their cancer and speaking up with their doctor about it. If the doctor “blows them off,” more of them are finding another doctor. Today, we patients are commanding respect. If we don’t get it, many of us walk out the door. To be fair, I have found the top doctors are totally in sync with this. They want smarter patients. They want to discuss research progress, clinical trials and long-term treatment planning. They want to discuss management of side effects. They want to discuss helping us improve our quality of life. That is what our survey respondents expect. And the growing number of people like this will force more doctors, clinics, and hospitals to line up with a true patient-first model, not the hollow one that has been in vogue in recent years as a marketing ploy. My belief is the effect of patients who speak with their cancer doctor about what they learn from Patient Power and other credible sites is far reaching. Doctors are learning from us as we bring up what we’ve learned online, often from world experts. The afterglow of what we discuss in the exam room, I believe, helps those less engaged patients with appointments that follow. Our discussions get doctors thinking. And the experience they gain with us, often opting for leading-edge treatments, gives them experience – perhaps in an accelerated way – to help others. We’ll see how all this shakes out in cancer areas where, I am happy to say, there are now many emerging options. Do patients who are self-advocates accelerate positive change in the practice of cancer care? I think so. What are your thoughts? And, if you participated in our survey, thanks for being our partner in the effort to produce positive change in cancer care that benefits us all. Look for more survey results coming soon, including a closer look at how people responded with specific cancer types. This is part of our effort to understanding our audiences better and provide insights, so we all can do a better job. Wishing you and your family the best of health! Andrew

Daniel in the blue shirt with his family

Daniel in the blue shirt with his family

The past couple of weeks, my Facebook newsfeed has been filled with friends and relatives dumping buckets of ice water over their heads as they participate in the ALS Association’s “Ice Bucket Challenge,” a grassroots and viral approach to raise awareness of a rare disease and to boost fundraising. As you probably know, it has taken on an unexpected momentum of its own and brought tremendous benefits to the effort. I have read that the Ice Bucket Challenge has helped the ALS Foundation raise over $40 million when they raised less than $2 million last year. While dollars are vital and important to advance research, awareness is critical, too. For example, I am living with a rare condition also, called myelofibrosis. Fortunately, the pharma companies are pouring money into therapies for it, therapies that, if safe and effective, could bring them revenue from other related conditions, as well.

ALS, a terrible and fatal condition that can take away your ability to eat, talk, and move, unfortunately, has no real effective medicines. And I haven’t heard of a magic bullet yet on the horizon. It’s very personal for me as a close friend, Daniel Mulhaney of Mercer Island, Washington (near Seattle), has ALS and, despite a terrific Ice Bucket Challenge attitude, his health is going downhill.

Daniel is very public about it now. And just a few days ago, with help from his daughter, Michaela, he produced his own Ice Bucket Challenge video. Please watch it.  Here’s what Daniel wrote announcing the video: “For me, the hurdle was less about having ice water dumped on my head (and, WOW, was it ever a shocker!), and more about exposing my physical self to you – I’ve lost so much upper body muscle mass.  Having been into fitness all my life, it’s quite a change. But the Daniel that you’ve known is still there, it’s the avatar that I’ve occupied all these years that’s approaching its ‘used by date.’ ”

As you will see, Daniel can no longer speak. The voice you hear is the computer voice of his iPad speaking what Daniel wrote. Daniel is right-handed. But he can no longer move his right hand. So imagine him plunking out the letters of his message to us slowly with his partly functional left hand. I recently sat with Daniel as he patiently did this. And he smiled as the computer voice “spoke” his words to me. Daniel can no longer swallow. He keeps a suction device close at hand. During my visit, like a dental hygienist, I helped operate the device when Daniel signaled it was needed.

Daniel can no longer “eat” like we do. He has a feeding tube that attaches to a little port on his belly. While I was with him, Daniel ate, and he smiled. Around him, his wife tended to chores, and Michaela visited with friends. It was a different experience then just about 6 months before in Barcelona when Daniel led his wife, daughter Michaela, and his college-aged son on a trip to Europe. They stayed with us for several days. Daniel could eat and talk then. But he needed me to sign credit card receipts, because his right hand was almost nonfunctional then. This was part of his “bucket list” trip and included a family reunion in France. Later, he stopped in Boston to explore a clinical trial. He decided not to participate as he didn’t feel this one offered real hope for him, and it would require him to be separated from family and friends.

So, as you can now see, I have seen ALS close up. Even as a two-time cancer survivor, it makes me feel healthy and blessed. My wife, Esther, and I have wanted to do our part. No, we have not dumped ice water on our heads. But we have joined ”Team Daniel” virtually to support a charity walk in Seattle in September. Here’s a link if you would like to support this, too.

The Ice Bucket Challenge has proven to be a bonanza for people researching and affected by an orphan condition. Maybe this is a model to help other little-known groups, as well. Not to be critical, but in this age of pink ribbons and pink baseball bats, awareness – and money – needs to be spread around.

I pray Daniel, who is as alert and sharp as ever, will have many quality days with his family and friends and know that by “speaking out” he is touching us all and hopefully setting the stage for treatments that can prevent suffering in the future.

Rather than sign off my blog my traditional way, here’s the quote Daniel uses as the sign-off for his email updates:

“I promise to smile and laugh and cry and love for every breath that remains in my body.”

        - Steve Gleason – #37, Former New Orleans Saints Safety

 

Thanks for reading this,
Andrew

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