When people think they do not have what it takes to make a difference in the Parkinson’s world or in their own Parkinson’s progression, we’d like to say “Guess again.” This story is a perfect example that doctors, scientists or researchers are NOT the only ones who have answers.
In March 1992 (reprinted in November 1996) and published again in this issue of NEWSWORTHY NOTES is the article GROWING UP WITH THE ELEPHANT IN THE LIVING ROOM by and from Ross Bonander, a young man whose father had Parkinson’s. The name of Alan Bonander (1940 – 1996) still resonates in the Parkinson’s world. He was the epitome of someone who ACCEPTED or surrendered to his disease diagnosis but NEVER GAVE UP.
Long before his time, along with his doctors, Alan developed a computerized pump that time-released, liquid sinemet into his duodenum. Alan would come to our support groups to talk about this procedure which was especially interesting to those who were having heavy fluctuations in their “on and off” times. Alan designed, and perhaps even sewed, the vest he wore to carry the computer and the liquid Sinemet.
With ascorbic acid in the recipe, Alan made his own liquid Sinemet; he was instrumental in the creation and programming of the system that released the liquid from its pouch in his vest, through a tube, entering his duodenum.
Medline Plus describes the Duodenum: The duodenum is the first part of the small intestine. It is located between the stomach and the middle part of the small intestine, or jejunum. After foods mix with stomach acid, they move into the duodenum, where they mix with bile from the gallbladder and digestive juices from the pancreas. Absorption of vitamins, minerals, and other nutrients begins in the duodenum.
Earlier in this article we used the phrase “long before his time”, because today we have a process that is on the fast track for FDA approval, called Duodopa®.
Today’s “LIQUID SINEMET”
The liquid Sinemet that Alan prepared was the forerunner to Duodopa®, a Carbidopa/Levodopa (generic sinemet) gel that is administered directly into the small intestine through a surgically placed tube. The purpose of the gel is for treatment in people with advanced Parkinson's disease who do not have adequate control of severe, disabling motor symptoms when using available combinations of other medications for Parkinson's disease.
According to scientists, the body transforms Levodopa into dopamine. When taking levodopa it increases the amount of dopamine in the brain which should reduce the symptoms of Parkinson's disease.
Levodopa alone does not get into the brain. When combined with Carbidopa, it ensures that the Levodopa, or enough Levodopa, reaches the brain where it is needed. The Carbidopa improves the effect of the Levodopa as well as reduces the adverse effects of Levodopa, such as nausea and dyskinesia.
Duodopa® is a gel that is given throughout the day with a pump, through a tube, directly into the duodenum or upper area of the small intestine. This process allows the body to receive Levodopa and Carbidopa simultaneously and continuously throughout the day, which allows the amount of drugs in the blood to be more constant, reducing the risk of such symptoms as dyskinesia.
Who can, should or should not be treated with Duodopa®?
People with advanced Parkinson’s are targeted to be the most often treated with Duodopa®, when treatment with other medicines no longer deliver satisfactory control of severe and disabling symptoms. A Movement Disorder Specialist (a neurologist with a fellowship in Movement Disorders which includes Parkinson’s) should be consulted to carefully examine and determine if Duodopa® is the suitable treatment for the disease manifestations and the patient’s health condition.
Indications for someone NOT being appropriate for this treatment is someone who cannot take Carbidopa/Levodopa in pill form because they are hypersensitive or allergic to Carbidopa or Levodopa, or because they have other medical conditions.
If a Person with Parkinson’s has a history of complications or problems with their stomach and/or intestines, including but not limited to swelling, obstruction, impactions, etc., or their pancreas prevents placement of a PEG tube, Duodopa® should not be used.
Side Effects of Duodopa®
Duodopa® side effects are similar to the side effects that can occur with tablets of Carbidopa/Levodopa. The most common serious effects of Levodopa include irregular heartbeat, cognitive changes (changes in mental condition), hallucinations, depression, allergic reactions, inability to urinate, and narcolepsy a condition where the patient reports falling asleep without warning.
Side effects caused by the intestinal tubing
Duodopa® requires that a tube be surgically placed into your intestine. Complications related to the surgery and the insertion of the tube may include movement of the tube back into the stomach, knots or obstructions in the tube, infection of the surgical opening, leakage from or around the opening, swollen flesh around the opening, and stomach pain. Bleeding and damage to the lining of the digestive tract, associated with the surgical procedure can transpire as well as seepage of fluids from the stomach through the opening can result in inflammation of the lining of the abdomen. Pneumonia may also occur
To minimize the risks from side effects, good communication and regular contact with your physician while being treated with Duodopa® are most important.
Duodopa® is currently approved in all 30 countries of the European Economic Area (EEA = EU plus Norway, Iceland and Liechtenstein), Croatia, Switzerland, Canada and Australia and has received Fast Track Designation from U.S. Food and Drug Administration Duodopa® Infusion System