April is Parkinson’s Awareness month

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PDF AprilParkinson’€™s disease affects millions of people worldwide. Patient advocacy groups like the Parkinson’€™s Disease Foundation and the Parkinson’€™s Action Network provide resources to patients and advocacy tools to promote more research on this devastating disease. PDF has a toolkit to empower advocates and patients to spread the word, educate themselves and others and learn more about Parkinson’€™s research funded by PDF.

PAN Tulip

Meanwhile, PAN is urging advocates to contact their representatives in Congress to support a bipartisan effort to increase funding for the National Institutes of Health; you can also plant a virtual tulip in honor of a loved one and make a contribution to PAN in their honor.

Survivor Margaret Tennent writes on PDF’€™s patient stories what it is like to live with Parkinson’s:

      It was as if somebody had pulled a plug, causing my brain to lose its connection with my body. Even simple commands were totally ignored. During these episodes I frequently found myself “frozen” in a certain position, unable to move even the tiniest muscle. I felt that if only I could stand upright, I could make my legs “remember” what walking felt like and get going again. By that time, however, my muscles were so exhausted that no amount of effort was sufficient to force me into a vertical position.

Parkinson’€™s disease is a devastating illness that targets brain cells, or neurons, and slowly impairs a patient’€™s ability to move, regulate their balance and later during the disease course it can impact basic cognitive functions.

Follow news and advocacy alerts from both PAN and PDF on Twitter, Facebook and by visiting them on the web: @PANtweets, PAN Facebook, PAN online; @PDFparkinson, PDF Facebook, PDF online. Both PAN and PDF are Reseach!America members, and we applaud their advocacy efforts.

Post ID: 
691

Comments

I am Debora J. Jeffries from Stamford, CT am 45 years old and have Parkinson's Disease. Though recently diagnosed, I've had the disease for almost 9 years. That woman's story is so similar to mine. My friends ask me if I have paralysis. The answer is no. The disease is more of a you want to move but can't get the signal to your limb. Every patient is different. I freeze often when walking, have slowing body of movements with coordination problems and get jerking tremors in addition to classic Parkinson's rapid tremors. Jerking tremors feel like a taser gun and are painful luckily not often. If the government cuts funding due to the sequester, they should cut the earmark funding for pointless agendas and causes. We in the Parkinson's community deserve way better.

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Without continued support for health research, many of the most promising young scientists, their ideas and a myriad of potentially life-changing scientific breakthroughs will vanish into oblivion.
Paul Marinec, PhD; University of California San Francisco