Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”
Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.
People who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.
Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.
I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.
I am so excited to announce that Angela and I will be guest blogging for the site, PatientsLikeMe.com. I look forward to sharing stories, insights, and information through my blog posts and joint posts with my wife and partner, Angela. Here’s a link to our first post, a Q&A session: http://bit.ly/2iJb0Ex
If you are unfamiliar with this website, here’s a quick description from the PatientsLikeMe About Us page:
We’ve partnered with 500,000+ people living with 2700+ conditions on 1 mission: to put patients first
Imagine this: a world where people with chronic health conditions get together and share their experiences living with disease. Where newly diagnosed patients can improve their outcomes by connecting with and learning from others who’ve gone before them. Where researchers learn more about what’s working, what’s not, and where the gaps are, so that they can develop new and better treatments.
It’s already happening at PatientsLikeMe. We’re a free website where people can share their health data to track their progress, help others, and change medicine for good.
ParkinsonsDisease.net Reaches 10k Likes!
If you follow this blog, you know that I have been actively posting on the new Health Union site, www.ParkinsonsDisease.net. What you may not know is that this site recently made a rapid climb to 10,000 likes! Here’s where you come in—in honor of this success, you have the opportunity to vote for one of the fine charities below to receive a donation, if they win the vote count. Encourage your family and friends to vote as well. Vote today by clicking this link and scrolling to vote in the poll!
- Parkinson Voice Project
- Davis Phinney Foundation
- Parkinson Association of the Rockies
- Parkinson’s Foundation (National Parkinson Foundation/Parkinson’s Disease Foundation)
- The Michael J. Fox Foundation for Parkinson’s Research
Parkinson Voice Project – Parkinson’s Lecture Series
The Parkinson Voice Project has launched a lecture series which features Parkinson’s experts talking about topics affecting our community. They hold this lecture each month and it’s live streamed for anyone in the world to attend. They also archive previous lectures so you can watch the lectures that are of interest to you. Visit https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1876 for more information about upcoming lectures and view previous presentations which include lectures on wellness, physical therapy, cognitive challenges, making a Parkinson’s diagnosis, and Deep Brain Stimulation.
Virginia Education Day – October 7th, 2017
If you live in or near Virginia, I hope to see at the Virginia Education Day in Williamsburg on October 7th, 2017. I am a member of the planning committee. The event is being held at Fort Magruder Hotel and Conference Center. The Education Day is has a diverse mix of wellness information including presentations by physicians, people with Parkinson’s, caregivers, and allied health professionals. Click this link to see the conference brochure and click here to register for this event.
Living Well Conference 2017 – Parkinson Foundation, Western Pennsylvania
Join Angela and me in November in Pittsburgh for their Living Well Conference 2017, where we will be presenting and facilitating two breakout sessions. Read this link for all the details. We would love to see you there! We will also be selling and signing our books and audio CD collection at both events—we hope that you can make it!
Back To School
A phrase or term in the English language that makes young people shudder and hide when heard. To parents it means a return to normalcy and yet it means more carpooling, drop-offs, early mornings, and late nights.
We are all constantly back to school. Once we stop educating ourselves, we limit our potential. Always be back to school!
This Sunday marks the first Partners in Parkinson’s event in Washington DC. The event is a full day of education on living with Parkinson’s and learning about resources in the DC/VA/MD/DE/WV area. I encourage you to come and be a part of this free event. Wednesday 10/8 at 12 pm is the deadline for registering online. You can register as a walk up on the day of the event.
As part of the Partners in Parkinson’s event, there will be a Resource fair that includes representatives from universities that have Parkinson’s programs, local and regional support and exercise groups, vendors who provide services to our community and many more community resources. It’s a great opportunity to meet with the staffs of these organizations and network.
You also have the opportunity to hear from those living with Parkinson’s, their carepartners, and allied health professionals who work with the PD community.
Register online and find out more at: https://www.partnersinparkinsons.org/attend-an-event. There are also upcoming Partners in Parkinson’s events in Philadelphia, Chicago, Denver and Los Angeles before the end of 2014.
P.S. Read my September blog posting discussing other upcoming PD Educational Events this fall.
I am neither a doctor nor am I a scientist. I am simply a Parkinson’s patient living over 25 years with what I have been told is a “progressive, degenerative, and chronic illness”. My theories hold no scientific merit and my empirical data is close to nil, and yet the proof is in the results of my actions. As I write this blog post, I can tell you here and now that I am as well as I have been in many many years. I don’t reveal this information for applause or braggadocio but to explain that I truly believe there may be tweaks, nudges, and slight alterations to our “conventional” perception of illness to take it even farther. Call it faith, call it hope, call it luck, but if it works for you and you improve why put a label on it? Just accept that what works for you works for you.
As a Reiki practitioner and master, I can tell you that I have seen a change of some sort in every person that I have worked on over the past 15 years. The distinct change in the person’s eyes, the calmness in their demeanor, the deepening of their breath, and often the clarity of their mind are noticeable results following a Reiki treatment. Even when the client is unable to identify a change or is unable to recognize any difference, it is often quite obvious to the energy worker.
Reiki has given me such peace, control, and strength. I found it as a skeptic but when I discovered the tremendous benefits of calmness and energy that it brought me, I new this was what I needed. That was 15 years ago. I am not supposed to get better, but I am. I have no doubt that Reiki is one of the key tools to my success.
I have little doubt that we humans are susceptible to many stressors that we don’t often think my be a stressor. Consider electricity, Electro Magnetic Fields (EMF) and exposure to busy streets, or a hectic and loud room. For me, if I am exposed to high energy power lines or even an electronic store full of appliances, I can feel that energy bombarding my body and going right through me.
If carrying crystals or stones in your pocket calms your mind and body and you feel an attachment to the energy of the object, by all means, do it. As wacky as it may sound, I have found benefit and protection by carrying stones with certain properties. At little cost and no risk, what is the harm in carrying a piece of quartz and malachite to see if it helps.
Putting a cap or at least reducing your stress level will no doubt reduce your symptoms, improve your state of mind, and improve your sleep. Sometimes taking a break from outside influences like television news, newspapers, reality TV, and people with negative attitudes, will seem like a vacation. You need positivity and to hear the good stuff. What we hear, see, and touch leaves and imprint on us. If the mind is a computer and we program it with negative software, the more likely we are going to need to upgrade our virus protection.
If we remain skeptical and close-minded about exploring options that are foreign to us, we cheat ourselves and an awaiting opportunity. If you are open enough to explore a complementary therapy, I encourage you to investigate the therapy and practitioner, go in with an open mind, and be flexible to try another therapy if you discover this therapy isn’t right for you. Make sure the therapy is noninvasive, within your budget, and that the person doing the therapy is certified and experienced.
Parkinson’s Disease Puts Your Life In Perspective
I will not tell you that having Parkinson’s Disease (PD) is a walk in the park. This disease can dictate your life and clutter your schedule every which way. I have seen it take its’ toll on many a marriage and family. I have also seen PD bring people together and strengthen family bonds.
How you and your friends and family deal with your diagnosis of PD will play a large part in how you deal with this illness. Some friends are going to be your rock and will be there when you need them the most. Sadly, you may see some friends crumble and possibly distance themselves from you. This is the unfortunate reality that some friends can’t go beyond a certain limit of friendship. I think some close friends don’t want to watch you go downhill, an unfortunate but realistic problem. It is my belief that sometimes friends are more unable to cope with PD than the patient. Some people just cannot accept bad news.
Your true friends and family will shine. You’ll have no trouble identifying who is going to stand by you and who will jump ship. You may get a few surprises along the way. It is my belief that my true friends accept me whether I am healthy or ill, and if they don’t accept me for the state that I am in, then that’s the way it is.
Receiving a diagnosis of Parkinson’s Disease will make you stop and consider your future. It’s a sobering reality to get a grip on. Now is a good time to evaluate what it is you want to accomplish within the next 20 to 50 years of your life. The questions are important and probably obvious, but here are just a few:
- How am I going to continue to work?
- Do I tell my employer?
- What do I do now?
- How do I tell my spouse, child, relative, friend?
- What do I do next?
- Do I begin medicines or wait?
- Do I need a Neurologist even if I have a fine primary physician?
- If Parkinson’s is chronic and progressive is there anything that I can I do?
These are just some of the many questions that arise when someone is newly diagnosed, especially for the early onset Parkinson’s patient. I was diagnosed at 23 but saw symptoms as early as age 17. Now at 43 years old, I can’t control the disease but I can accommodate for it and plan around it.
At some point, if your PD progresses, there may come a time when an activity or function that you really enjoy is no longer possible. As disappointing as this may sound, keep in mind that you may just have to make adjustments and substitutions. Keeping active in both mind and body can go a long way to slowing the progression of Parkinson’s Disease. I believe that it is possible that if you take control of your health, early, you can keep PD in check.
It is important to know that there are resources and loads of valuable organizations that can help you answer your questions. There is an amazing network of Parkinson’s patients across the United States and the world. Many of us have been where you’ve been. While PD can be and often is a very individualized illness, sometimes sharing stories and information proves that many of us share a common situation. It is vital to understand that you are not alone with this illness.
I believe a support group is meant for empowering the attendees with information, options, and an to provide an understanding that the Parkinson’s community is just that, a community. As a unified unit our community can rally for better drugs, new therapies, better dissemination of information, and with hope, a way to stop, and end Parkinson’s Disease completely.
Below is a brief list of some helpful resources to get you involved:
- National Parkinson Foundation (NPF) – Find Local Resources in your Community – http://parkinson.org/Search-Pages/Search.aspx?pSearchOpt=Local
- American Parkinson Disease Association – National Young Onset Center – http://www.youngparkinsons.org/
- Parkinson’s Action Network (PAN) – http://www.parkinsonsaction.org
- Parkinson’s Disease Foundation (PDF) –http://www.pdf.org/en/resourcelink
- Parkinson’s Alliance – http://www.parkinsonalliance.org/
- Michael J Fox Foundation – Living with Parkinson’s – http://www.michaeljfox.org/living.cfm
I am not a medical professional and this information is my personal view. I am just sharing my medical journey with you, the reader. I encourage you to seek all avenues that can benefit your condition.