Parkinson’s Disease (PD) knows no boundaries, when it comes to age. Young, middle aged, or older, we are all susceptible to the throws of this illness. Parkinson’s is a complex illness that is still not fully understood as to why one person may get the disease but others do not. It may be that PD is actually more than one disease, under a dome of many.
I don’t know that there is making any sense of this illness. The diversity of symptoms and effective medicines vary so much that it is rare, if ever that two patients share the same symptoms or find the same benefit from a similar regimen.
Unraveling the complexities of this mysterious illness or illnesses continues to be a challenge for medical science. New discoveries may require a new and less conventional methodology for explaining this most elusive and cunning illness.
The Parkinson’s Disease (PD) Community lost 2 of its best known iconic figures in 2016. The most recognizable figure on the planet, the boxing legend and humanitarian, Mohamed Ali and Janet Reno, the first US female Attorney General. Thanks to both of them for their awareness and advocacy in spreading the word on PD and the importance of educating the public, our government, and the medical world. They were very public faces who helped to express the needs of this community.
This year I have been to far too many funerals of dear friends who have succumbed to the symptoms of PD. It is a tragic reality– one, that I dread sharing with you.
It is my hope for 2017, that we see more cooperation from all parties involved in drug manufacturing, drug regulation, and drug research to lead to some understanding of just how our brains work. Someone, somewhere, sometime in the not so distant future is going to recognize a common element or link that may very well break open the mystery of Parkinson’s disease. Until that very special day, when the brain reveals itself, it is our duty to ourselves and our loved ones, to do all that we can for ourselves and our conditions.
I wish all of you, my friends and readers, a very healthy and happy New Year!
While in Portland,OR for the 4th World Parkinson Congress 2016 (#WPC2016), I visited several vendors and their booths. Here are some of the interesting products and people that I had the opportunity to encounter:
I had the pleasure of meeting and speaking with the creator and owner of the blog, The Shoe Maven (www.theshoemaven.com), Tonya Walker, at the More Than Motion booth. Tonya has been living with Parkinson’s disease since the age of 32. Not only is she a mother of a young son, a law professor, a wife, someone with Parkinson’s but also a clothing designer of her own cause-based fashion label (TSM Originals). I appreciate her strength, determination, and drive to make the community more aware. Her positive attitude and passion to make a difference shone through our discussion.
I spoke with Ms. Walker about her blog and her passion for sharing her journey, improving awareness about young-onset Parkinson’s disease, and her love for fashion. With over 120 pairs of shoes, I can say that Tonya blows away my measly 5 or 6 pairs. Tonya found benefit from DBS or Deep Brain Stimulation first by having the surgery on her left side in 2013 and then her right side in 2015. You can watch Tonya’s video at https://www.facebook.com/parkinsonsmorethanmotion/videos.
As I have shared with my readers for over 8 years, Parkinson’s disease requires a proactive pursuit to search for a combination/recipe of complementary therapies, medications, or medical procedures that work exclusively for you. No two Parkinson’s patients are exactly alike, and what may work for me, may not work for you.
Here are some useful tools that I found at the vendor exhibits that might be helpful to know about:
Global Kinnetics Corporation
Global Kinnetics Corporation just released The Personal KinetiGraph, a movement recording device to assist doctors in treating and managing their patients with movement disorders. The PKG Data Logger is a wrist-worn device that was recently FDA cleared for the recording of movement, associated with Bradykinesia, Dyskinesia and Fluctuations. The unit is a nice looking watch capable of providing important mobility information to your doctors. As of 2 weeks ago, the device was not yet approved in Virginia, but some states are currently using it right now. You may want contact them for information in your state at www.globalkineticscorporation.com.
I dropped by the LiftWare booth to try out their stabilizing handle and attachments for people having hand tremor and difficulty with a fork or spoon. The product worked well, appeared to be durable, and was comfortable to hold. If holding a fork or spoon is a challenge for you, due to tremor, I think LiftWare is worth investigating as an option. For more information go to www.liftware.com
I dropped their booth to take their upright walker for a test drive. My first spin in the walker took getting used to, but I did see the benefit of this device. Unlike many walkers, the LifeWalker keeps the user upright and at eye level, allowing for face to face contact. I found the units well-built at first glance and well designed. To learn more go to www.lifewalkermobility.com.
These are not product endorsements. I encourage you to do the research for yourself and make your own decision. I hope that this was helpful!
Here are some more of my photos from WPC 2016:
Sure it looks like fun, but watch the videos and you might be playing with a potential fire hazard, a product that is sending many to the emergency room, and a powder keg of possible problems. I totally believe that taking a calculated risk now and then keeps life exciting. If you are going to take any kind of risk, make sure that you have looked at all the angles! If the choice is to ride the incorrectly named “hoverboard”, at least put on a helmet, padding, ride on a semi-soft surface, and try to be prepared to fall, rather than expect to immediately master it.
If you have Parkinson’s disease and treasure the faculties that you have, this device, in the current state, may not be the right choice for you. If you desire the ER or an unexpected doctor visit, then spin the wheel, but I’ll wait for another more reliable iteration of these products. I prefer a less risky, less self-com-busting, more stable device that admits that it does not hover (it rolls). Here’s wishing you and yours a very Happy New Year and I will see you right here in 2016!
Dealing with any illness, whether it is Parkinson’s or not, is not an easy task! Even if we call ourselves “healthy”, we are all still dealing with something that causes tension or stress. No one is immune from baggage in their life, whether it is personal, work-related, or emotional. Identifying those triggers in our life that make us ill: certain people, places, thoughts and memories, poor diet choices, lack of sleep, environmental and climate impact, and just not being aware of your body, are all contributing factors to health.
April has been declared to be Parkinson’s Awareness Month. So, I pose this question to you—what does that mean? If you or someone you care about is dealing with the symptoms of Parkinson’s disease (PD), I hope that maybe you will volunteer for your favorite organization, consider a donation of time and or money for advocacy, educate the onlooker to why you move the way you do or just educate yourself and those around you about the illness.
10. Parkinson’s disease is not just for the elderly. It doesn’t care how old you are. I was in my early 20’s when I was officially diagnosed.
9. Parkinson’s disease is unique for each and every patient. No two of us are alike, making this illness even more perplexing.
8. Dyskinesia or erratic and often uncontrollable jerking movements is a side effect of medication and not due to the disease. PD can alter the strength of the voice.
7. Often, people with Parkinson’s may stop or even freeze in a doorway for some unknown reason. A solution as simple as a light touch can assist them through the door.
6. Timing of a Parkinson’s patient’s medicine regimen is crucial to maintaining their daily activities. One missed dosage can disrupt the whole schedule.
5. Parkinson’s disease’s gold standard drug, Levodopa-Carbidopa is over 50 years old and remains the best drug available.
4. Parkinson’s disease can affect the mind, body, and spirit of the patient. Cognitive problems may or may not arise, tremor, rigidity and balance issues may occur, and many patients may deal with depression and anxiety or more.
3. Deep Brain Stimulation (DBS) is an option for some PD patients but it is not a cure. DBS is brain surgery and it does not stop the disease progression. It may lower your dosage of medicine but usually you remain on some medicine.
2. The discovery of Parkinson’s disease is nearing its 200 year anniversary and the illness is still not fully understood how or why it exists.
1. Currently, there is no official count for Parkinson’s disease for just how many people in the United States have the illness. We guess and estimate between 500,000 and 1.5 million but there could be many more. Without some form of data collection we just don’t know.
If you would like to learn more about any of the 10 pieces of awareness listed, please visit my helpful websites list on the right hand side on this site.
I haven’t purchased a new backpack or stocked up on office supplies. Ads galore remind me that it is time to go back to school. I reminisce of Trapper Keepers, bagged lunches, hours of homework, and finding the ability to appreciate the joy of learning.
Going back to school has new meaning to me as I near my late forties. I ask myself, did I ever truly leave school? Life requires constant learning–the classroom and playground may have changed. but many of the lessons still hold up.
1. A large part of school, in general, is finding your way into a peer group that is comfortable for you.
2. Much of school is discovering who you are and what you want to accomplish.
3. If nurtured, school can show you where your talents lie.
4. School forces you to interact with a wide diversity of people whether you want to or not.
5. Whether it is grammar school or college, education broadens our exposure and appreciation for the importance of knowledge.
Learning never stops and everyday is back to school. I don’t enjoy seeing summer end. I think of all the Seasons, summer ranks high in my top 4. Keeping back to school alive is a wonderful reminder that we should always continue to learn. Enjoy the rest of your summer!
Last week, I went to one of my favorite local hangouts for a bite to eat. I had been great the whole day but my meds decided to try to get me dyskinetic. The meds won out for a brief time and although I didn’t notice if anyone else saw my twitching and shaking, it had to happen at the most inconvenient of times. It rose it’s ugly head at dinner, but why not?
While waiting for my order, a gentleman I never met came over to ask me a question. Before he could even get the question out, I explained to him that I have and had Parkinson’s disease for over 20 years and what he witnessed was a brief episode caused by a medication side effect and not the disease itself.
This very friendly man told my wife and I that he was curious because he was back in school in his mid-forties to medical training as a physician’s aide. I loved his curiosity about the Disease and the meds. This was a real opportunity to educate and inform someone in the medical community about what PD is and isn’t. When these opportunities arise, I strongly urge you to take full advantage to teach those who understand PD. You can leave a lasting impression and make a powerful impact.
A Soft Voice in A Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease – 12/12/12 Book Launch!
To all our friends, followers and fans – I am excited to announce that today/Wednesday 12/12/12, I’m officially launching my first book: A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease.
As today is 12/12/12, I’m asking you to help promote the book by doing one or more of the following to help us get the word out about the book.
- Join our 12/12/12 book launch on Wednesday, December 12, 2012. Let’s make A Soft Voice In A Noisy World the most talked about book on Parkinson’s Disease!
- Please buy the book on Amazon (paperback and Kindle), Smashwords (lots of eFormats), Createspace, Kobo, or Barnes & Noble (Nook).
- “Like” us on Facebook, Smashwords, Createspace, Kobo, Barnes & Noble (Nook), Amazon (paperback and Kindle), or Pinterest.
- Share a mention or link via email, Twitter, Linkedin, Facebook, or by some other social media site to 12 or more friends who may have interest in learning about this book.
- Please take a moment to read a portion of this book and comment, review, rate, or blog about A Soft Voice In A Noisy World at any, some, or all of the sites listed above.
- Email us comments, suggestions, thoughts, or requests for speaking engagements to asoftvoiceatrobbworks.com.
- Help us get to 12,000 followers by 12/24/12. Follow us on Twitter@asoftvoicepd.
I hope you enjoy my book and find health and hope!
Join me, Karl Robb and my guest host, Angela Robb, as we answer questions and discuss issues impacting Parkinson’s disease(PD) patients, caregivers/care-partners, and those who want more information about living well with PD. Thanks to Robert Rodgers (www.parkinsonsrecovery.com) for the chance to guest host. Feel free to submit a question before the web show by logging into the web link and password below or phone your questions in live with the provided information and code below, on the day of the show (Sunday, December 9, 2012 at 5:00 PM Eastern Standard or 2:00 PM Pacific)
See the online and phone information below for show details:
Online Event password: karl2012
Primary dial in number: (206) 402-0100
Secondary dial in number: (323) 476-3672
Dial in password: 200414#