By Carol Walton, CEO, The Parkinson Alliance
Taking a step back to see how much Parkinson’s disease research has progressed
Every few years I believe that you need to step back and look at how Parkinson’s disease (PD) research has progressed. Research takes so long and costs so much that sometimes it gets discouraging—but in the past few months I have read about some wonderful projects that tell me every penny we have spent on research has been well worth it!
Margaret Tuchman, President of The Parkinson Alliance, had Deep Brain Stimulation (DBS) almost 15 years ago. The difference between what she went through over a decade ago to have this surgery and the practices and technology that are available today is amazing. The Parkinson’s Unity Walk is funding research today that will potentially advance DBS even further, where if successful the outcome will be customized DBS in the future. Many of you may have dogs that have a little chip put under their skin in case he/she gets lost for identification. Technology is progressing towards that someday we will have a chip inserted into the DBS systems that will sense when your body needs electrical stimulation—what part of your body needs it and how much you need!
The National Institutes of Health (NIH) just funded a multi-center consortium collecting and analyzing thousands of pieces of data to develop a “global” view of neuromuscular diseases. Dr. Clive Svendsen, professor and director of the Board of Governors Regenerative Medicine Institute, compared this shift in perspective to the way meteorologists began predicting weather years ago—viewing global trends and collecting vast amounts of data to create a forecast for a specific place and time.
As many of you know, falling and freezing of gait (FOG) are two of the major challenges in Parkinson’s disease. In some cases, that one fall is enough to cause problems for many years. We are currently funding a fascinating project entitled: What Patients Look at When Walking. The focus of this project is an eye tracking machine that allows patients to walk freely, and records a video of what is in front of the patient and then indicates exactly what the eyes are focused on. Hopefully, the knowledge we gain from this project will help prevent some of the falls and FOG for people with Parkinson’s and that will greatly enhance quality of life.
Sinemet, (carbidopa-levodopa) is still the gold standard of medication for Parkinson’s. Today we know of at least four new delivery systems for this miracle drug. Some medications will be able to provide 24/7 continuous delivery resulting in less “off” time for those living with PD and others will act as a rescue drug for people with Parkinson’s. Drugs that are already approved by the Food and Drug Administration (FDA) are being tested to determine which ones might help people with PD. The following are some examples:
- Cynapsus is developing APL-130277, an easy-to-administer, fast-acting reformulation of apomorphine, in a sublingual (oral) thin film strip for the acute rescue of “off” motor symptoms of Parkinson’s disease.
- Civitas Therapeutics is currently testing an inhaled version of Levodopa, called CVT-301, which reduces tremors and reduced movement caused by Parkinson’s disease and can be used as a “rescue” drug.
- Impax Pharmaceuticals has submitted a New Drug Application with the FDA for Rytary, an investigational extended-release capsule formulation of carbidopa-levodopa for the treatment of idiopathic Parkinson’s disease.
- NeuroDerm’s ND0612L and ND0612H for treatment of moderate and severe PD respectively, are both in clinical trials. The delivery systems administer Levodopa subcutaneously through a small belt-worn pump similar to the administration devices used to deliver insulin to diabetic patients. A second generation product, using a patch pump to deliver LD/CD, is under development.
Progress is being made and although we all want to know the cause and cure, we have many therapies to help with quality of life until we have the ultimate answer. Research is so critical and we must keep up the fight because we are making progress.
This guest post was written by Carol Walton who is the CEO of The Parkinson Alliance, as well as the Executive Director of the Parkinson’s Unity Walk.