It had been a little more than four months since completing my second space shuttle mission, STS-59, on the shuttle Endeavour. I was finishing my annual flight physical at the Johnson Space Center Flight Medicine Clinic. The words from the flight surgeon were as expected: I was in great condition with nothing of note. Then I asked the doctor to look at my right shoulder because my racquetball game was suffering.
He asked if I had pain. I told him I wasn’t in pain, but my right arm did not swing naturally when I walked. This comment must have set off some alarm, because he observed my walk down the hall and quickly said he would take me downtown to the Texas Medical Center the next day.

I remember saying, “I don’t believe we can see an orthopedic surgeon that quickly.” He merely noted that we were going to a neurologist.

Little did I know that next day would change my life so quickly. The neurologist spent five minutes with me before saying that I had Parkinson’s disease. He added I would have to undergo several separate tests to prove that I didn’t have some other neurological disorder. Parkinson’s disease is diagnosed by the process of eliminating other possible diseases. After several tests, the diagnosis was confirmed. This was December 1995.
To their credit, the flight surgeons asked me what I wanted to do about flying. I quickly said I wanted to continue with all activities, including standing in line for another space shuttle mission.

I kept my condition a secret to all, except my wife and my children. I assumed senior NASA management were told, but no one ever spoke to me about the disease. They protected my privacy. I continued my normal duties and was subsequently offered my third shuttle mission — STS-76, which included a planned space walk. The mission was highly successful. One year after that mission, I left NASA for a job in the private sector supporting human space flight.

With the exception of my closest friends and family, I kept my condition a secret for almost 15 years. My reason for secrecy was simple: People did not need to know.
Now I’m an advocate for Parkinson’s disease awareness. Having Parkinson’s disease is no reason to stop living life to its fullest extent. Yes, as the disease progresses I have had to change the way I do certain activities, but I continue to do them.

I have a keen awareness now of the stress my disease places on my loved ones who provide me encouragement and tender loving care. The caregivers to a person with Parkinson’s are the people who give so much of their lives to care for a loved one. My wife is my caregiver and I am acutely aware of her sacrifices. Parkinson’s disease affects more than just the patient. The patient needs to understand the caregiver is there to help.

So do not let Parkinson’s disease control your life. You may do things slower, or you may not be able to do things you once did as easily. It is not the end of the world. Do not give up trying.

Rich Clifford
5/13/13

To watch the video, go to: http://www.cnn.com/2013/05/03/health/human-factor-clifford/

My dear friend Bob passed away in July 2011 while on a trip to the Central Coast of California, visiting with his brother and sister-in-law. He had always wanted to see that part of the coastline, particularly the Hearst Castle there. His Parkinson’s disease had been progressing relatively slowly, but while he continued to maintain his life and life-style, the disease was clearly holding him back in many significant ways. His walk was slow and stiff, for instance, and he was told by his doctor to carry a cane so he would not fall…He refused and tried bravely to live with the difficult gait along with other symptoms that slowed him down. 

Bob had spent a lifetime as a top Foreign Service agent working in Japan.  He spoke Japanese fluently and had many friends in the country, including several high-level government officials. In fact, he and I and his brother and sister-in-law had just come back from a spectacular three-week trip to Japan, planned by all of Bob’s many friends there.

His death was a result of his throat muscles freezing up and he choked on a piece of meat while at dinner on the night before he was scheduled to come home from California.  They tried to remove the meat but nothing worked, including the Heimlich maneuver. He went into cardiac arrest and the paramedics who came were able to revive him in the ambulance on the way to the emergency room.  But he lapsed into coma in the ICU with no brain activity for five days and died 11 hours after being taken off the respirator.   

One of the scariest side effects of Parkinson disease is this freezing up of the throat muscles. The idea of choking is terrifying to many sufferers. Bob did have several previous incidents when something stuck in his throat and while he never focused on the negative, this did frighten and embarrass him. I remember one night when I was with him at a dinner for a Japanese organization he supported. A friend reached into his throat and pulled out the piece of meat choking him as he lay on the floor where he had fallen.

For me, this points to how critical it is to invest as much time and money as possible in research to find the cure that would do away with the life and life-style-threatening symptoms like frozen throat muscles. Existing medications for Parkinson’s disease do very little to address it. The Michael Stern Parkinson’s Research Foundation is an organization that is in existence to encourage – and fund – the research leading to a cure.   

Throughout Bob’s life, he was never bored, nor boring. He had a keen eye for the beauty in what most might miss seeing altogether. He delighted in simple pleasures and in his experiences with exquisitely elaborate natural and man-made wonders. He was brilliant, but not condescending. He loved his family and his friends, a bird’s song and flight, travel and new experiences, dinner out before the opera, a play, concert or ballet, New York, all things Japanese, and his independence.

Bob’s life, interrupted so cruelly by Parkinson’s Disease, reminds us of the critical importance of research to find a cure, allowing men and women who suffer it to renew an unbroken continuity with the life – and the friends and family — they love.  

Anonymous

Lack of facial affect is often an early symptom of Parkinson’s.

Starting about 1999, family and friends noticed that my movements seemed stiff and slow. At about the same time, my personal doctor and also my brother-in-law, an MD specializing in rheumatology, recommended that I see a neurologist. By June of 2000, the diagnosis was clear–Parkinson’s.

At the time, the new wonder drugs for Parkinson’s were the dopamine agonists–Requip and Mirapex. I began my pill-popping career with a half-milligram of Requip four times a day. It was effective in reducing stiffness and slowness, but less so in improving fine coordination in fast, repetitive movements like playing a musical instrument. The prevailing wisdom of the time was that Sinemet (Levadopa), the drug that revolutionized the treatment of Parkinson’s in the ’60s, has a fixed number of years of effectiveness after its first use, and that it probably hastens the death of remaining dopamine-delivery cells. Recent studies cast doubt on both of these propositions.

In about a year most of my work was gone. I started doing music copying work for Saturday Night Live and playing Dixieland jazz dates. I have always enjoyed traditional jazz and I found ways to play it fairly well with limited technique.

Nevertheless my playing continued to deteriorate as I yawned through about five years of Requip. Finally Sinemet seemed like the only viable solution, and the “buzz” about the consequences of its use was less intimidating than they were five years earlier. My playing improved dramatically with Sinemet and Mirapex. Although I’ll never be the trumpeter I was before Parkinson’s, I’m able to enjoy making music tremendously and to maintain the quality of my work at a professional level.

My partner Anne Olin has guided me through programs of exercise for more than 10 years. A former dancer with the New York City Ballet under Balanchine, she takes her classes to the place where movement, rhythm, and music intersect to allow those of us with Parkinson’s to escape some of its rigidity and slowness. She teaches classes in Poughkeepsie and Kingston, NY. In New York City I’ve found great benefit from Olie Westheimer’s Dance for Parkinson’s program at the Mark Morris Dance Center, and William Wade’s Sing for Parkinson’s program, also operated by the Brooklyn Parkinson’s Group at the Mark Morris Dance Center. You probably won’t catch me dancing, but lately I’ve been singing the old songs in public addition to playing them.

Playing the trumpet, singing, and going to dance class make me feel good. I have a more positive outlook and the symptoms of the disease are less apparent.  I wouldn’t recommend a trumpet as a substitute for Levadopa, but I do notice that after an evening of trying to stand up straight, move lots of air through the horn and sing with plenty of air, I’m in pretty good shape. And on alternate Mondays I have Bill Dunham to thank for this–not only for his philanthropic work in Parkinson’s but for his leadership of the Grove Street Stompers at Arthur’s Tavern, on Grove Street in Greenwich Village.

Peter Ecklund

03/25/13

For ten years I had a bunch of subtle and seemingly unrelated symptoms. It was only after I was diagnosed with Parkinson’s disease three years ago that I was able, in hindsight, to put my symptoms together, to know where/why they were coming from. One of the first things I had noticed was that I had been losing, then lost, my sense of smell. I noticed this in particular because my father was a leading food photographer so that in our household tuning into our food, thoroughly tasting it – which requires the sense of smell above all else – was always very important in my life. Next I noticed lack of coordination and dexterity on my left side, when I was cooking. And eventually during many other tasks. 

Elizabeth Wynn, 57.

Current objective symptom tests for Parkinson’s are expensive, time-consuming, and logistically difficult, so mostly, they are not done outside trials. What is exciting though: voice is affected as much by Parkinson’s as limb movements and Dr. Max Little, who is a Wellcome Trust-MIT Postdoctoral Research Fellow at the Media Lab, Massachusetts Institute of Technology, has developed the technology to test for symptoms using voice recordings alone.

This could enable some radical breakthroughs, because voice-based tests are as accurate as clinical tests, but additionally, they can be administered remotely, and patients can do the tests themselves. Also, they are high speed (take less than 30 seconds), and are ultra low cost (they don’t involve expert staff time). So, they are massively scalable.  The Parkinson’s Voice Initiative aims to record 10,000 voices across the world.

Whether you are healthy or living with Parkinson’s, all you have to do is record your voice and that information is collected to build a system to screen for and monitor the symptoms of this debilitating disease.

The contact number for the U.S. is 1-857-284-8035.

To find more information and phone numbers for 8 other countries, go to www.parkinsonsvoice.org