Hooray for the Ice Bucket Challenge!

Ice Bucket ChallengeThe 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

 

Robin Williams’ Death: A Message About Depression

Robin WilliamsWe were all shocked by the sudden loss of actor and comedian Robin Williams. Just today I had breakfast with an old friend from Marin County, California. She went to high school with Robin and would run into him often in her home town of Tiburon. People in that area knew him and his family. I even once attended a party with his mother. But whether you lived in the Bay Area or not, Robin Williams’ death too soon seemed personal, as he made us laugh for so many years. Last night, our family, during a reunion, re-watched “Good Morning Vietnam.” He was an incredible talent.

Robin Williams didn’t die of natural causes. He died by taking his own life. Deep depression, in some cases an ongoing illness and in other cases an onset of deep anguish, must have made him feel hopeless. There are times when many of you reading this, perhaps with a cancer diagnosis or because a loved one has been diagnosed, feel hopeless too. I remember, a few years ago, seeing a friend off in the distance sitting under a tree drinking from a bottle of scotch. I walked over. He said, “It’s hopeless, I’ve just been diagnosed with pancreatic cancer.” The man was bewildered and as low as one could go. He hadn’t told his family yet and didn’t know if he could. True, as it turned out he did not have a long life. But increasingly, that is changing for some, and it is a very variable road for any of us on our cancer journey. Some beat the odds, and in more and more cases – especially some blood cancers now – the odds are improving greatly.

But no matter what, the diagnosis can send you reeling and unfortunately, some people fall into deep depression or even take their own life. This is so sad because there are treatments, and there is help. I know in myself, I work hard to see the positive in each day. But if depression was part of my illness, I would need help doing that. If you feel like your health is failing in this regard, don’t be ashamed to ask for help. And if you are a “support partner” of someone with a serious diagnosis like cancer, don’t be ashamed to ask for mental health help for the person you care about.

At major cancer centers now there are typically oncology social workers. Ask to meet one at the center or in your town. In the U.S., there are social workers at the Leukemia and Lymphoma Society and at CancerCare in New York. Their services are usually free. And check out our recent interview about how a social worker can help.

Other organizations provide such services in other countries. Dealing with the diagnosis and medicines for cancer are tough. The goal is to cure us or, if that can’t be done, to allow us to live well for an extended time. Don’t let depression dampen that time. And please, please, if you have thoughts of shortening your time on your own, get help! The National Suicide Prevention Lifeline: 1-800-273-TALK and the Crisis Text Line: www.crisistextline.org are both important resources.

Here at Patient Power we are a community and need each of us to work together to get well individually and as a group.

The death of a celebrity draws tremendous attention to an issue. In Robin Williams’ case, it’s depression and suicide. These are real and so unfortunate. But if we confront this in our own lives and families maybe, in a strange way, Robin Williams will have given us one last gift.