Laughter, giggles, chuckles, guffaws, and smiles are powerful tools for us to help ourselves–I hope the creation below does one of those for you!
April has been proclaimed to be Parkinson’s Awareness Month, but just how aware are we really of Parkinson’s disease?
Those of us living with the illness as well as our care partners, caregivers, and close relatives, are all well aware of the physical, the mental, and the spiritual toll that Parkinson’s can take. Unless you live with the disease on a daily basis, it is difficult to comprehend the wide range of symptoms, drug side-effects, and varying degrees of overall health issues that are truly Parkinson’s related—but I ask, how much real awareness is there of this disease?
Just getting a diagnosis with Parkinson’s can be an arduous endeavor. The journey with Parkinson’s is riddled with unknowns that neither scientists nor neurologists can explain, at this time. Dedication to unraveling the mystery of our gray matter is crucial to ending all neurological disorders.
In 2017, the bicentennial of James Parkinson’s observations and discoveries will be recognized. If you look at the landscape of successes in battling this illness, for all the time, money, and attempts at awareness, there is so much need that is left unmet. After all this time, there is still so little known about this elusive condition.
Maybe, spreading awareness and information, when at all possible is a key. Consider sharing your story with the uninitiated and those who are unfamiliar with Parkinson’s, for this offers an opportunity to demystify an illness that is so unique for each individual. Let’s not limit Parkinson’s awareness to just 30 days!
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.
Just in case you missed it, here is the video link to the Champions of Change for Parkinson’s disease.
The event was held at the White House.
Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney.
As we near April and Parkinson’s Disease Awareness Month, I would like to publicly thank and recognize the carepartners and caregivers who make our lives better. The carepartner/caregiver can be a tiring and sometimes thankless task.
To my wife, best friend, partner, carepartner, and true love, Angela, I congratulate you on being honored and recognized at the White House as a Champion of Change. I am so proud of you –today and everyday! I am so grateful to be in this life with you by my side! I am so happy that everyone, besides me, sees just how amazing you are!
Monday mornings can be exciting or drudgery, depending upon your perspective to the upcoming week. Once in awhile, we all need a nudge or a strong shove to get back on track. No matter how disciplined or focused you might be, we all may stray from our mission at hand.
Today, I share with you one of my favorite quotes. All I know about this quote is that it is attributed to Japan and I like it very much! I hope it motivates you and reminds you to keep on moving forward.
“Be not afraid of going slowly; be afraid of standing still.”
Okay, while the quote does refer to fear, and fear isn’t usually a healthy emotion except in times of sensing danger. I think the quote promotes the importance of keeping up the progression of doing our very best and maintaining a momentum in our lives. Please give it some consideration. Have a great week!
Parkinson’s disease has given me many gifts, lessons, and opportunities. I am forever thankful for the amazing people that I have met and developed friendships with over the past 20+ years. There are far too many of you for me to thank and acknowledge at this time, but I would like to point out an important person who works quietly for change in the Parkinson’s community and expects no praise for her tireless commitment.
Linda Swanson, of McKinney, Texas, is a force that I encountered 5 years ago. Her infectious spirit and ebullient energy is something she brings wherever she goes, and oh, she just happens to have Parkinson’s disease. A marathoner, a half marathoner, a constant volunteer, Linda is always raising awareness about Parkinson’s disease. Linda and her husband, Mike, are tireless advocates and volunteers for Parkinson’s charities. Please take a moment to learn about Linda’s story in the video, Changing the Face of Parkinson’s, which was submitted to 2015 Neuro Film Festival. Please support Linda by viewing and voting for her video titled Changing the Face of Parkinson’s (registration is required to vote).
The Swansons are two people, who along with many of you fill me up with hope and inspiration!
I have spent more time in doctors’ offices than I care to remember. It occurred to me that my insights have merit from experience. Here are some suggestions that I would love to see implemented in doctors’ offices:
10) When speaking with the patient, talk to them as if they were your own best friend. By considering that someone close to you may be just as at risk as your patient should make you more sensitive and thoughtful to how you relate and interact with your patients.
9) Your time is valuable, but so is mine. I have no hard numbers on just how many hours I have lost from waiting on doctors, but I can assure you that I am owed at least a few months.
8) As medicine and technology continue to merge more and more and the veil of healthcare costs are revealed through websites like https://openpaymentsdata.cms.gov/, physicians ‘relationships with pharmaceutical companies and procedure providers will become public knowledge. This fascinating site reveals how much doctors were paid by drug companies (at this time the site only covers the last few months of 2013). Keep an eye on the site as it gets updated in the next few months.
7) I am not a doctor but as a patient and one who knows his own body, it is of vital importance that you hand out helpful and nurturing advice prior to rushing into altering a drug regimen or suggesting a risky life threatening procedure. Listen to the patient as well as the care partner/caregiver. Each of them has important information to relay to you to make the best possible recommendation.
6) If your patient sees more than 1 doctor other than you, it would seem practical and logical that you and the patient’s physicians share data to refrain from duplicative testing, sharing a history of allergies and sensitivities, and just keeping all the players involved, on the same page. Health requires a team effort where doctors in their specialty actually confer and share their knowledge with the other specialists working with the patient. Communication between ALL your doctors is easier in this modern day.
5) How you communicate with your patient can be more critical than the information that you are delving out. Patients get white coat anxiousness for a reason. A good visit means more than providing the patient with helpful medical advice, it would make the whole doctor experience better for everyone if you could show compassion and view a doctor’s visit from the patient’s perspective.
4) The term “waiting room” should be gone for good, but if it must still live on, how about proving that the patient/customer still matters? Comfortable seating, cheerful art, free Internet access, and water to take medications are the very least of the amenities that one might expect, as they wait. Television in the waiting room does not appeal to everyone and can be very annoying when made mandatory.
3) Some physicians have embraced technology and made strides in making it easier for patients to update their records and to reduce paper in triplicate. Patients with mobility or handwriting issues should not be forced to fill documents in by hand. Some offices have not moved forward at all.
2) The administrative people and nurses that patients must deal with are a direct reflection of your “practice” as well as you as a healthcare provider. If they aren’t treating the patient right, you may end up with unhappy patients, or even worse, fewer patients.
1) Good medicine is more than just handing out drugs or understanding the science behind a condition, it is about real care for the patient’s needs. It is about working with the patient and his or her family members to determine the best possible strategy for the patient’s future and best outcome.
The people that we encounter leave indelible impressions that can last a lifetime. When in I was in my early twenties and unable to get a diagnosis of my illness, some individuals that I did not know all that well showed me kindness that I remain grateful for to this day.
I had moved to a city that I did not know well and had no friends. I was drawn to an art gallery that specialized in nature photography. The photographs were comforting as was the gallery owner and photographer who were one and the same. His name was Patrick and he became a dear friend. His gallery gave me solace. On a day when I needed a getaway, Patrick’s gallery was my sanctuary.
Before I left town, I bought 2 of Patrick’s amazing southwest desert photos. The photos were not just pieces of art but they were reminders of our friendship and the gift his friendship meant to me. I don’t think I ever told Patrick what his friendship meant or how he got me through some dark days with his mentoring.
Patrick and I lost touch as many of us often do when we move away. Not until recently did it occur to me to look Patrick up and reconnect with him through social media. I couldn’t find him anywhere. After racking my brain to how I might find him, I remembered that we had a mutual friend who was a photographer. I contacted our mutual friend after 20+ years In hope that he could tell me where Patrick might be. A few days later, I got my answer.
The email said he was sorry that he didn’t have better news and it linked to a website. I clicked on the website and it linked to the local paper. The paper announced Patrick’s obituary and read from the year 2007 that Patrick had had a lengthy battle with lung cancer.
I was filled with regret that I had lost touch and had failed to realize what he had done for me. I had let too much time pass. I wasn’t there for him like he had been there for me. I was and am very sorry but I learned a huge lesson from Patrick and I am thankful.
- When someone shows you kindness, make sure that you express your gratitude so that they know how you feel.
- Share the gratitude that you feel for that special person who stepped into your life to make a lasting impression. Feel the need to pass it on.
- Don’t wait to share your feelings with those people in your life. You may not get another opportunity.
I am grateful that I can share the gift that Patrick gave to me. I hope that you will share it as well.