Get It Out

imageLast summer, the findings of a study conducted by the University of Houston were released regarding the well being of female breast cancer survivors, specifically Chinese women. This ethnic group was chosen primarily because of the stigma cancer holds within the Chinese community.

“Unlike the Caucasian population, many Chinese have less knowledge of breast cancer and they feel that the cancer is very threatening, and they associate it with immediate death,” said Qian Lu, assistant professor and director of the Culture and Health Research Center at the University of Houston.

The study, which was published in Health Psychology, a scholarly journal, was based upon writing. Each of the 19 participants in the study (based in the Los Angeles area) were given health assessment questionnaires before the study began, followed by three sets of instructions.
In week one, patients wrote about their deepest thoughts/fears/emotions in regards to their experience with breast cancer.

Week two, they wrote about coping mechanisms they used to relieve stress brought on by the disease, and in week three they were to write about their positive thoughts and feelings. The patients who put in 20 to 30 minutes each day regularly (3-4 days per week) for the three week period saw positive change in relationship to their immune system.

The report stated that the purpose of the writing exercise was “to facilitate emotional disclosure, effective coping and finding benefit, which would work together to bring stressors and personal goals into awareness and regulate thoughts and emotions relevant to the cancer experience.” It also went on to say that the “release offered by writing had a direct impact on the body’s capacity to withstand stress and fight off infection and disease.”

So – what’s this have to do with Parkinson’s disease?

I don’t think Chinese women have an edge when it comes to writing about their illness, disease, sickness, heartache, joy and/or thanks-givings. No – I believe that writing is good for anyone’s mind,  soul,  heart, and  spirit. You can scratch down (or type out) your thoughts and feelings and say whatever you choose in regards to how you’re feeling. It’s a release of pent up frustrations, anger, fear, confused thoughts, sorrow, grief – the list could go on and on. It’s a release when no one else will listen or when no one may understand. It’s called journaling. It’s therapy in its least expensive form (besides the one on one sharing of conversation between two good friends).

Journaling (or as the study referred to – writing) will not cure cancer. It will not cure Parkinson’s. But it will allow for a place to dump the stress and walk away, perhaps leading to a feeling of life being a bit lighter. When you’re body isn’t focused on fear, grief, sorrow and the like, it has a greater capacity to “withstand stress and fight off infection and disease,” as Lu stated above. Journaling offers the opportunity to get out your fears without feeling foolish. To release the grief over feeling you’ve lost something valuable. To be thankful for what you do have.

And that last sentence is important…

If you spend your time journaling everything negative about your life with PD, your life with PD will be anything but positive. There are still good and beautiful things to behold in the midst of this journey. So, if you are thinking about journaling your life with Parkinson’s disease, either as a patient or a care giver – release the fears, the unshed tears, the grief and the sorrow onto paper but make sure you include and end with the positive. Always end with something positive.

It’s there. I promise.

YOU COULD EARN $300 FOR HAVING PD AND A RECHARGEABLE DBS IMPLANT!

Qessential, a medical market research company that is devoted to the medical device and pharmaceutical industry, has a client that is currently seeking to conduct in-person interviews with individuals who have Parkinson’s disease and who have received a rechargeable DBS implant for the management of their symptoms.

The goal of the study is to understand what the individual dealing iwth PD goes through, how he or she makes the decision to get a DBS unit, how both the device and his/her condition impacts day-to-day life, and what could be changed about the device or the process of receiving the device that might make things better for the individual, as well as for others dealing with the same situation.

The study involves a two hour in-home interview with an honorarium of $300 upon successful completion. Interested individuals may contact Deborah Booker of Qessential directly at 1-800-932-4249 or email her at Deborah@qmmr.net.

Please note:
*Patients should have rechargeable units.
*Patients should have received implants preferably (not mandatory) within the last year.

*Patients should preferably (not mandatory) be under the age of 70.

The company is happy to speak with individuals who fall outside the preferred parameters, as well, and to add their contact information to their database so that patients can be contacted about future studies related to PD.

 

More Info on New PD Drug

AbbVie Announces U.S. FDA Approval of DUOPA™ (carbidopa and levodopa) Enteral Suspension for the Treatment of Motor Fluctuations in Patients with Advanced Parkinson’s Disease

· DUOPA is the first and only treatment providing 16 continuous hours of carbidopa and levodopa for motor fluctuations in advanced Parkinson’s disease

· In a clinical trial, patients treated with DUOPA experienced significantly greater improvement in “off” time than patients treated with oral carbidopa-levodopa immediate release tablets

NORTH CHICAGO, Ill. January 12, 2015 – The U.S. Food and Drug Administration (FDA) has approved AbbVie’s (NYSE: ABBV) DUOPA™ (carbidopa and levodopa) enteral suspension for the treatment of motor fluctuations for people with advanced Parkinson’s disease. DUOPA is administered using a small, portable infusion pump that delivers carbidopa and levodopa directly into the small intestine for 16 continuous hours via a procedurally-placed tube.

DUOPA was approved by the FDA as an orphan drug, a designation granted to products intended for the treatment of rare diseases or conditions affecting fewer than 200,000 patients in the U.S.

“There is unmet need for treatment options for patients with advanced Parkinson’s disease. As the disease advances, it can be difficult to control motor features,” said C. Warren Olanow, M.D., Professor, Department of Neurology and Department of Neuroscience, Mount Sinai School of Medicine, and lead investigator of the DUOPA pivotal trial. “In clinical trials, DUOPA was shown to significantly reduce the amount of off time advanced Parkinson’s disease patients experienced.”

In the advanced stages of Parkinson’s disease, patients may begin to experience “off” time, or periods of poor mobility, slowness and stiffness. Additionally, in Parkinson’s disease patients, the spontaneous emptying of the stomach becomes delayed and unpredictable, which can affect the timing of when orally administered medicines leave the stomach and are absorbed in the small intestine. DUOPA provides patients with the same active ingredients as orally-administered carbidopa and levodopa immediate release, but is delivered in a suspension that goes directly into the small intestine via a tube placed by a percutaneous endoscopic gastrostomy procedure with jejunal extension (PEG-J). This type of administration is intended to bypass the stomach.

“The FDA approval of DUOPA is another significant milestone for AbbVie’s pipeline,” said Michael Severino, M.D., Executive Vice President, Research and Development and Chief Scientific Officer, AbbVie. “This advancement is important for patients with advanced Parkinson’s disease and their care teams, as it provides a new therapeutic option to help manage motor symptoms.”

“Due to the progressive nature of Parkinson’s disease, it can be difficult to treat over time, especially in the advanced stages,” said Joyce Oberdorf, President and CEO, National Parkinson Foundation. “Our organization is encouraged by the introduction of a new therapy that may provide another treatment option for affected patients and families.”