Don’t be alarmed– but be aware, my fellow Parkinson’s disease travelers!
As if we didn’t have enough to worry about along our journey, it was released recently, that the Transportation & Security Administration (TSA) has a program called “Quiet Skies” that is noting behavior, looking for excessive fidgeting, perspiration, and cold stares by passengers. Supposedly, fifty passengers a day are identified.
We are being tracked and monitored both on the ground and in the air. Our habits, reading material, and reactions are noted and logged, if we bring any kind of attention to ourselves. The knowledge that anything out of the ordinary needs investigation is understandable, but when you are faced with a neurological disorder that can alter your walking, uncontrollable movement and body temperature regulation (both hot and cold), tremor, or balance issues- these physiological reactions are possibly red flags that could bring focus on those of us living with an illness.
Maybe, just maybe, through education and identifying ourselves as people with Parkinson’s and educating TSA agents about facial masking, dyskinesia, bradykinesia, as well as the numerous subtleties that can come with Parkinson’s, might be just what the doctor ordered. Instead of making the TSA wonder what we are going through, we need to create a teachable moment that might just lead to real changes.
People suspect and often fear what they don’t know about. Unless you live with Parkinson’s disease daily and are aware of the wide variety of symptoms and unpredictability of this illness, only through education and extra training will those unfamiliar with neurological disorders come to be educated.
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!
Keeping focus and staying mindful is a daily challenge for most of us but add chronic illness to the equation and the challenge gets that much harder. With all the emails, voicemails and other electronic messages, signs, advertisements, phone calls, and various shout outs from the world, distraction of thought is so easy.
Finding a peace within ourselves comes much easier when we are able to separate ourselves from the frenzy and din of modern technology. Taking a few moments a day of quiet time for yourself can ease tension, quiet the mind, and clear your thoughts. A few minutes of peace is like a reboot for the brain.
We must never let ourselves stop learning and adding new abilities. The overwhelming multitude of information from how to juggle, how to whistle, how to tie a bow tie, how to draw, to almost any talent that you desire can be found on youtube.com. If you want to learn a language, take a course, or just find a video to make you smile or laugh out loud, there is a good chance that you’ll find it.
If you want to learn math, business, science, and a wide range of classes that you either missed the first go around or want to try again, checkout khanacademy.com.
I have discovered that the tactile feel of a pen on paper and on a tablet has led to improving my ability to write and draw. What once was illegible is now discernable, and I think I owe it to being mindful and focused while in the moment. I have found that by trying to teach myself to draw that I have better control of the pen or pencil.
Make a list of 5 to 10 goals that you might want to complete like: 1) Learn a really good card trick, learn the secret to telling a joke, learn how to make a better cookie, tie a bow tie, how to juggle, learn to meditate, or sharpen a knife. These are just a few of the opportunities to take advantage of on the web. You will be surprised by the diversity and quality of the material that is available at no cost.
Just learning one new talent or honing an old talent is a good way to keep the mind and body active and connected. Stay open-minded and flexible! Try your best and stay focused on the task at hand.
There is still a great deal that you can do and enjoy. Try something new today.
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.
There is no denying that Parkinson’s disease (PD) is an awful and debilitating illness that makes life much more challenging. Sometimes, whether we like to admit it or not, we need help. A support group can be an excellent way of receiving the help that you seek.
As someone who used to shun support groups, I decided that I would develop my own style of group. I wanted a group where patients and care-partners could come and feel empowered and educated. A support group should not leave you feeling helpless, alone, or without hope. Our group shares information about new developments in the world of PD as well as what is working and what isn’t working. Often, group members suggest something to try or a tweak that maybe those seeking a suggestion hadn’t considered. In my mind, this is the model of the kind of support group that can really benefit both patient and care-partner.
Here are some suggestions to starting a support group that can empower your participants:
- Educating others and giving alternatives provides an opportunity to change one’s situation for the better.
- Maintaining a positive and hopeful spin on your meetings not only keeps the meetings upbeat but can make for a more united and cohesive group.
- Sharing doctor information can be one of the best ways to find the right doctor or neurologist for you.
- Sometimes, just going to a support group reminds you that you have more options than you thought.
- A support group is what the members make it. Like any group, the members keep the group alive and with care and gentle adjustment from group leaders to keep the meetings on track, a support group meeting can be a very healing and beneficial tool to contribute to your healing.
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.