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Parkinson’s Disease: A Guide for Patients & Families – Part 1 of 3

Up to a million people in the United States are living with Parkinson’s Disease. Lena has been living with it for over 25 years. Ken for 5 years. They are sharing their experiences. And Medical Experts are sharing their knowledge to help you understand what a diagnosis of Parkinson’s means to you and to your love ones. You’ll also hear from actress Holly Robinson-Peete who became a health care advocate because of her personal connection to this illness.

Holly Robinson-Peete“You can live very well with Parkinson’s Disease today.”

40,000 times a year someone in the United States is diagnosed with Parkinson’s Disease, two words that can cause concern, even fear.

Lena (Parkinson’s Patient)“I remembered bringing my hands up like this ‘It can’t be true, can’t be true!’ But, then I picked my self up and went to work actually.”

Lena continued her work as a social worker for more than 2 decades after her diagnois. Ken still works full time in marketing. As their experiences show, by partnering with a healthcare team people with Parkinson’s can continue to lead active, busy lives.

J. Williams Langston, MD“They have multiple treatments that can help symptoms day to day. Some are quite dramatic. So I think to get diagnosed with Parkinson’s now is very different than it would have been 10 to 15 years ago.”

Holly Robinson Peete remembers when things were different. Her father, Matt Robinson, was a successful television performer and writer. He was the first Gordon on Sesame   Street and wrote scripts for hit programs like the Cosby Show. But when he took her east for college she noticed something was wrong.

Holly Robinson Peete“We said our good byes and he walked away and I noticed he had a limp in his left leg. So I said ‘Dad, why you walking like Fred Sanford?!’, another show he use to write for. And he made some joke like ‘Don’t worry about me. Just get good grades or you’ll be running a junk yard too!’ So we laughed about that, but then that limp became worst. He was eventually diagnosed with Parkinson’s Disease. This was in the 80’s when we didn’t have the internet and the luxury of the tremendous examples of Muhammad Ali, or Michael J. Fox. It was a really dark time to get this diagnosis. All I saw when I went to the Sara Lawrence Library was neurological and incurable. Those were the two words I saw.”

As the years went by Holly learned more about Parkinson’s disease. She and her husband NFL Quarterback, Rodney Peete, started a foundation to help others with this illness and to support research.

Holly Robinson Peete“So, we started the Hollyrod Foundation about 10 years ago to help support families and elevated the quality of life. I just feel when you have the opportunity to shed some light on something; I feel it is your duty to do that.”

Ken and his wife Anne are also active activates in the search of a cure. But as a patient Ken says the first step for people with Parkinson’s disease is to understand it.

Ken (Parkinson’s Patient)“My advise to someone that has been newly diagnosed with Parkinson’s Disease would be to do research. Get to know the disease itself

So, here are the basics about Parkinson’s Disease:

  • It is      named for Dr. James Parkinson who first identified it in 1817.

Kathleen M. Shannon, MD“Parkinson’s Disease is a degenerative disease of the brain. That means a disease that is caused by brain cells dying in center parts of the brain. And in Parkinson’s Disease the most important brain cells that are lost are ones that control the speed, timing and coordination of movement.”

Stanly Fahn, MD“When Parkinson’s Disease starts out it is very mild. You may not see much at all, maybe a little tremor, maybe a little shuffling with one leg when you are walking.

J. Williams Langston, MD“It is characterized by a number of features including tremor, shaking; which most people recognize; slowness of movement, stiffness. Sometimes a slow shuffling gait and balance problems.”

  • Parkinson’s      usually appears in adults between the ages of 60 and 65. But about 1 out      of 10 people with Parkinson’s Disease is 45 or younger. Lena      started feeling symptons when she was 43.

Lena (Parkinson’s Patient)“One day when I went to the refrigerator to pick up an egg it just slipped out of my hand, and that was very odd because I felt like I couldn’t control the pressure you need to grab a thing.”

  • The      symptoms a person feels and how quickly the disease progresses can vary a      lot from person to person. Usually the disease progresses very slowly.

Claes (Lena’s Husband) – “She was working very hard, we both were, and things just kept on going.”

  • Because      Parkinson’s Disease develops over a long period of time, establishing a      strong partnership with a healthcare team is important. That team will      include a Neurologist, a medical doctor who specializes in disorders of      the brain and nerves. Connecting with a Neurologists can provide access to      the most affective medical treatments for your particular needs.

Kathleen M. Shannon, MD“This is a chronic illness. It will be with that person every day for the rest of their lives; and the earlier you learn about the disease, and the more supportive the environment in which you are diagnosed and learn about your disease, the better your life will be.”

What Causes Parkinson’s Disease?

J. Williams Langston, MD“The cause of Parkinson’s Disease is completely unknown. However, there is a huge amount of research going on to find the cause. Two major possibilities are genetics or inherited, and the other is something in the environment. The most common of the genetic forms of Parkinson’s still only accounts for amount one and half percent of all cases. Our research, and that of others, strongly suggest that environment plays a major role.”

Kathleen M. Shannon, MD“… And so our current thinking is that there is probably a genetic component that makes you more susceptible to developing Parkinson’s, but perhaps in addition an environmental component that some how triggers the disease to start.”

No matter what the root cause, the symptoms of Parkinson’s arise because of a problem in a part of the brain that controls movement. Levels of a brain chemical call dopamine are too low in this brain region.

Stanly Fahn, MD“Because the symptoms of Parkinson’s Disease depend on the amount of dopamine in the brain; if there is too little dopamine you get more symptoms. As the dopamine production dies out therefore there is less dopamine and more symptoms develop.”

How Do I Know if I have Parkinson’s?

There is no blood test or brain scan to reveal Parkinson’s Disease. It is diagnosed by certain signs and symptoms. Ken had been experiencing one of the most classic. A tremor when a limb is at rest. Most commonly in one hand.

Ken (Parkinson’s Patient)“I spent most of the day with my left hand in my pocket because of the tremor.”

At first Ken thought his problem was stress related. But after a year of treatments that didn’t seem to work, the possibility of Parkinson’s led him to Dr. Shannon. At the neurologist’s office Ken was checked for other common signs. Limbs that are weak, clumsy, stiff, or aching. Difficulty with walking or balance.

Ken (Parkinson’s Patient)“They did what is called a pull test were she would walk behind me standing and pull my shoulders back in a very abrupt manner. And that is to check your balance.”

There was a physiological exam as well. And many tests of coordination.

Other possible signs of early Parkinson’s Disease include cramped, small handwriting, difficulty with tasks that require fine control such as buttoning a shirt. And decreased arm swing when walking. At the end of the testing Ken had his answer.

Ken (Parkinson’s Patient)“The doctor walked in, extended her hand, and said you have Parkinson’s. And it was just that blunt and as for me, that type of bluntness I appreciated because I don’t want hear all the things that it could be. Tell me what it is and then we’ll deal with it”

Stanly Fahn, MD“I think a person wants to know what’s going on. They want the diagnoses. They want to know what the prognosis is. Their family wants to know. They want to know what they should do about handling their Parkinson’s. So having the diagnosis will help the patient early on so, they can plan their life.”

But the answer does not always come right away. One reason Parkinson’s disease can be difficult to diagnosis is that individuals have different sets of symptoms.

Kathleen M. Shannon, MD“There are lots of other signs of Parkinson’s that are a little bit less well recognized. Things like constipation, depressed mood, sleep disorder, changes in skin texture.

Click here to view Part 2 of 3 the continuation of Parkinson’s Disease: A Guide for Patients & Families