April 2008 - “Waiting means you’re not necessarily living.  Embrace what we can do for ourselves and in a small way, we find our own cure”. – Davis Finney, former professional and Olympic road bicyclist – diagnosed with Parkinson’s at age 40.

For Joe Ralph, Assistant Director of Nursing at Heritage Village Rehab & Skilled Nursing (Gerry), life as he knew it, changed forever on October 22, 2004.  This is when he was officially diagnosed with the disease known as Parkinson’s at the tender young age of 38.  Most people think Parkinson’s only affects the senior population, but nearly 15% of all documented Parkinson’s cases are individuals under the age of 50.  And although hard to imagine, there are also specific cases of teen children diagnosed with the disease.  The disease shows no discretion and can affect people of all ages and social backgrounds.

Despite his Parkinson’s diagnosis, Joe is determined to live his life to the fullest.  He is in the early stages of the disease and his future prognosis is unclear.  What is unmistakably clear is the loving support he receives from his family and his appreciation towards them.  Joe states, “When talking about my disease, I tend to get wrapped up in my own situation, often saying ‘I’ this, or ‘I’ that, but the truth about the disease is that it affects more than just those who have it. I may have the diagnosis, but when it comes right down to it, I am not the only one in my family living with the disease. My wife and my children deal with it and provide me with unconditional support each day. Perhaps their burden is far greater than mine.” 

Parkinson’s Defined

According to the National Parkinson Foundation, Parkinson’s is a neurological disorder.  It occurs when certain nerve cells (neurons) in a part of the brain die or become impaired. Normally, these cells produce an essential chemical known as dopamine. Dopamine allows smooth, coordinated function of the body's muscles and movement.  When approximately 80% of the dopamine-producing cells are damaged, the symptoms of Parkinson’s appear.  The loss of dopamine production in the brain is the foundation of the primary symptoms related to Parkinson’s.  The key signs of Parkinson’s are tremors, slowness of movement, rigidity, and difficulty with balance.

 

Parkinson’s affects both men and women in almost equal numbers.  The disease represents no social, ethnic, economic or geographic boundaries.  In the United States, it is estimated that 60,000 new cases are diagnosed each year, joining the 1.5 million Americans who currently have Parkinson’s. 

 

Identifying Parkinson’s can be a difficult task. There is no X-ray or blood test that can confirm Parkinson’s.  Until the disease has become very advanced, it will not appear as an abnormality on a test.  A doctor confirms a diagnosis only after a thorough examination that rules out other conditions that have similar symptoms.  People suspected of having Parkinson’s should consider seeking the care of a neurologist who specializes in the treatment of the disease.

 

Living with Parkinson’s

As a young boy, Joe Ralph grew up in Lakewood.  He spent countless hours working in his father’s garden and enjoying late night ice cream trips to Bear Lake, Pennsylvania.  After some years as a grocery store manager, he felt a higher calling. At the age of 27, he enrolled in the Nursing Program at Jamestown Community College, where he graduated from in 1997.  After nursing school, he was hired at the Manor Oak Nursing Home, which has since closed its doors.  In 2002, Joe began his career with Heritage Village Rehab & Skilled Nursing as a charge nurse and eventually was promoted to Assistant Director of Nursing in 2006.  “The thing I like most about my position is the quality assurance portion of my job,” explains Joe.  “I have been fortunate enough to develop a number of different programs to successfully track skin care, falls, and other problem areas.  It gives me great satisfaction to know my efforts make a difference in a residents’ life.” 

Before his diagnosis in 2004, Joe started noticing subtle signs of his impending battle with Parkinson’s.  His thumb began to tremor uncontrollably.  The tremor would occur for many hours, and then would cease, only to start up again the next day.  From the thumb, symptoms spread to the rest of his fingers.  In addition to the thumb tremors, Joe was noticing other symptoms such as a difficulty speaking and rigid movements. Realizing these symptoms were not normal, he felt a sense of urgency to visit his doctor.  After many tests and doubting physicians, his greatest fear materialized with an official Parkinson’s diagnosis.  To control his symptoms, Joe is taking four medications, one of them several times a day, which have made a major difference in the severity of his symptoms.

Living with Parkinson’s on a daily basis is a constant struggle and challenge for Joe.  “Simply stated, Parkinson’s is a thief”, Joe explains. “Parkinson’s is annoying.  It steals your identity and is something that just won’t go away.  What a lot of people don’t realize is that Parkinson’s can also be very painful.  Muscle, joint, and back pain are very common.  I wake up every morning with my hands swollen and feeling like they were burning. Something as simple as getting out of bed in the morning is a constant struggle before taking my medications. Parkinson’s has taken away my ability to live a normal life. Through medications and other means, I have learned to adapt to and control my symptoms. Most importantly, I have the support of my wife Stephanie, and my children, without whom, I could not fight this disease alone. They are my support structure.”   

Caring for Parkinson’s at Heritage

In addition to Heritage Village, Heritage Ministries’ oversees Heritage Park (Jamestown) and Heritage Green (Greenhurst) Rehab & Skilled Nursing , all of whom provide specialized care for Parkinson’s residents on a daily basis. Each facility offers unique programs to keep Parkinson’s residents active in mind and body.   

Sherri McCall, Director of Nursing at Heritage Green, explains, “We have developed a program called ‘Helping Hands Purposeful Living’ that is offered to our Parkinson’s residents on a daily basis. This program provides purposeful opportunities for our residents to help in many areas within the facility.”  Some of the residents’ specific responsibilities include arranging flowers, watering flowers or plants, daily announcements or prayer, writing birthday cards to fellow residents, helping with bingo, assembling welcome baskets, assisting with church services, and many other rewarding duties that provide the Parkinson’s residents with a sense of duty and accomplishment. “It is our desire that each and every one of our residents feel a sense of value and purpose and that's what makes this program work,” states Sherri.  “These ‘jobs’ give a sense of meaning and purpose to our residents each day. Some of our Parkinson's residents have good and bad days.  This makes it difficult to go to a lower level of care or home because on those bad days, they may need a significant amount of nursing care. However, on the good days, we want to provide them with opportunities to enhance their independence, dignity, and purpose.”

On a daily basis, as the Assistant Director of Nursing at Heritage Village Rehab & Skilled Nursing, Joe has the unique opportunity to share his Parkinson’s experience with residents who are also afflicted with the disease.  “I was officially diagnosed with Parkinson’s on a Friday and returned to work the following Monday,” Joe states.  “When I returned to work, a new resident was just admitted with Parkinson’s.  Here I was, newly diagnosed myself, explaining to this gentlemen and his family exactly what they were going to expect in the coming months and years.  That was a difficult experience for me.  But, in a strange way, it was something I truly needed.  I had spent a couple of very angry days feeling sorry for myself after my diagnosis and asking ‘Why me?’  Maybe there was a purpose for this meeting.  Many families open up to me when I tell them I have Parkinson’s as well.  It creates a special connection and bond that cannot be broken.”

Parkinson’s Unity Walk 2008

Last year, Joe and his wife Stephanie participated in the Parkinson’s Unity Walk in New York City’s Central Park.  The 2008 event will take place on April 26th and Joe and Stephanie will be traveling to New York to once again participate.  The Parkinson's Unity Walk, a grassroots organization, began in 1994 through the dedicated efforts of patients, families, support groups, and friends who were affected by Parkinson's. Their main goal was to raise awareness and funds for research to find a cure. 

Joe states, “I was searching the Internet for support groups and came across the Unity Walk. After my diagnosis, I spent countless days feeling sorry for myself and decided this would be my way of ‘thumbing my nose’ at this disease.  The 2007 walk, which had over 10,000 participants, was a very humbling experience for me that I will never forget.  There were a number of people whose disease was much further advanced than mine. It really put things into perspective.”

The funds raised for the walk have dramatically increased with each passing year. In 1994, the Unity Walk raised $16,000 in research funds, and, in 2007, a new one-year record was established when over $1,700,000 was raised for Parkinson’s research.  One hundred percent of all donations are given to non-profit organizations for Parkinson’s research.

To support the Parkinson’s Unity Walk, and Joe Ralph specifically, please log on to www.unitywalk.org , click the “Donate” button, click “Sponsor Walker”, and then type in Joseph Ralph.  Or, if you prefer to fill out a donation form, you may contact Chris Anderson at 716-487-6873 or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it to receive a form in the mail.