On the morning of this chilly windy Thanksgiving day, I want to express my thanks for the support and sincere gratitude that I feel for the readers around the globe that take the time to read my writings on both this site (asoftvoice.com) and (www.parkinsonsdisease.net). I am so appreciative for family and friends. Gratitude is definitely the word of the day!
Thanksgiving reminds us that the things that we may take for granted and discount as small things in our lives, are really not so little at all. I hope that today is special for you. Please know that as I send this out to you in hope that it brightens your day. I wish you a day full of joy!
Trust me, I am not a reminder service, nor am I a medical professional, but with the soaring heat of summer, it may not be a bad idea for a few reminders to help keep your life a little safer:
- If you are taking Sinemet, pay close attention to direct sun exposure. Make sure to wear sunscreen and protection from the rays, so as not to burn.
- Check your medications for sun exposure side effects and talk to your neurologist and dermatologist about any moles, rashes, burns or bumps that are irregular, uneven, painful, changing color, or simply suspicious.
- Some of us with Parkinson’s have the challenge of self-regulating our body temperature. It is so vitally important to keep cool and to monitor if the sun is having any impact on you.
- Keep hydrated! I had a friend who was only drinking a little more than 4 ounces a day. When I found out how little he was drinking and he came back to hydration, my wife and I were amazed to see voice improvement, better cognition, better balance, and I dare say, a healthier look to his skin.
- If you have a pet or child, never leave them in a closed car without cool air blowing and water access.
- Don’t forget that many surfaces like concrete, blacktop, decking surfaces, and even wood can get blazing hot, making it very uncomfortable for paws and bare feet. If you have poor circulation or neuropathy, this could be very important.
- Be aware of your surroundings and your comfort always. Keeping aware will avoid some of those sun hazards.
- People with Parkinson’s are notorious for being deficient in vitamin D. Sunlight is great to help replenish your vitamin D level but pay close attention to too much direct exposure. Choose your time of day outside wisely and monitor your local weather for the safest time to walk your dog or go to the garden.
- Don’t forget a hat and sunglasses!
- Be sure to remember to always crack open at least one car window so you don’t return to a blistering seat and stifling air!
Use good, safe, solid, logic about being in the sun at its least intensity and keep cool!
I have been fortunate to meet hundreds of people over these thirty plus years with Parkinson’s disease (PD) at numerous events. After a while, you notice more and more about yourself and those around you. It’s a question that I have been asking for years: Is there a firm personality profile, specifically for people who get or are more likely to get Parkinson’s disease (PD)?
Many of the neurologists that I have shared the idea with, have told me that there wasn’t a profile, while an occasional doctor thought that I might be on to something. I have always had a curious mind and having met so many people from around the world with PD, it has given me an opportunity to make some non-scientific observations and even a rough hypothesis. Here are a few of my thoughts: People with PD are mostly well-educated, professionals, type A, over-achievers, in high stress work, curious, creative, and are outgoing people. People with Parkinson’s are often risk takers and not risk averse. They appear to be determined and are driven to a result. From personal experience, people with Parkinson’s are rich in questions, have an insatiable curiosity, and are quite clever.
What if there is a Parkinson’s profile? What does it mean? Could it help lead us to helping people even before they begin showing symptoms? Parkinson’s disease affects people in so many unique ways that it has been discussed that it could be more than one disease. If PD is more than one disease, it could take several varying solutions to get this illness under control?
The complexity of the human brain and body is unimaginably daunting. It’s inner workings, connectivity with multiple systems, and the diversity of chemical reactions and maintenance is hard to fathom.
In the past thirty years, while I have seen numerous studies, trials, pharmaceuticals, surgeries, procedures, and therapies, however, I have yet to see a targeted individual plan that works for everyone with Parkinson’s. Maybe, if there were an understanding of what our universal link or links to this disease were, we could break it down and eliminate what it is that unites us all, illness-wise.
The brain and all its’ complexities have proven to be a formidable opponent in giving up answers. Parkinson’s disease is a mysterious and complex condition that is going to take multiple approaches to unraveling its’ secrets.
In 2003, I attended my first Young-Onset Conference in Atlanta where I met some great people and made lifelong friends. In 2004, I was asked to join the planning committee right after the Minneapolis meeting. In 2005, I would help organize and arrange conferences each in a chosen city until 2008: Phoenix, Reston, Chicago, and Atlanta. Attendance was strong, and the Conferences brought in people from all over the world. The Conference for many of us turned into a large family get together.
The events were not only planned by the committee, but each member would present at the Conference as well. We were encouraged to live by example and to motivate the crowd. Our dynamic group of people with Parkinson’s covered an array of topics of how to live well with the disease.
When you bring hundreds of people together with Parkinson’s disease (PD) in one place, everything Parkinson’s seems normal and the world outside our hotel seemed odd. A peace came over us, where explaining ourselves to why we were doing what we were doing wasn’t necessary. Parkinson’s was the normal for this closed and safe environment and we all understood one another. A symptom of the illness or a drug side effect needed no explanation, but if it did it wasn’t drudgery to relate. An overwhelming feeling of belonging and being part of something that was changing people’s lives provided us an amazing opportunity. When the final day of the event came around, parting was hard for us all.
The medical information was helpful, but the living knowledge provided to us was empowering. What really made the difference in most of our lives was the freedom that we felt inside those walls and the relationships that we would take away. It takes a special event to recall so many joyous encounters around what could have been a maudlin event—but it was not.
The unity of these participants was unlike any other that I had ever seen. The newly diagnosed were being encouraged by those who had a little more experience with the illness. For many of the attendees this was there first conference devoted to Parkinson’s as well as the first time meeting another person with the disease. This was an important moment for thousands of people with Parkinson’s disease.
This was an event sponsored by a large foundation, organized largely by a committee of 7 or 8 Parkinson’s patients, which focused on educating, empowering, and enriching those diagnosed with PD. Most of the lectures were from those living with the disease and not those attempting to treat this disease. Who better to advise on how to live with an illness than those living with the experience?
There is a place for medical conferences where the program is filled with medical expertise and experts related to the illness of choice. Far too often, I see conferences about living well or living better, but the conference organizers neglect to include the ones who are living with the condition. The ones who are living well with the disease are the experts, in my opinion.
A doctor can tell you about research, medications, studies, and possible medical procedures, but they can’t tell you what it is to live inside our bodies. They can speculate and imagine, but it just isn’t the same. A conference for people with a specific illness, like PD, ought to be planned by the ones who understand it the most.
I had a conversation the other day with a good friend who had a hard time seeing eye to eye with me about this tragic government shutdown. I say tragic because during this time, those who are living paycheck to paycheck and those in need of medical care, families trying to pay their rent or mortgage, those who are unsure whether they can pay this month’s heating bill or pay their cat’s vet bill are struggling to get by only because our politicians are unable to relate to the families that they are hurting . For anyone just trying to put food on the table, the shutdown can only make life harder.
Appreciating those calm moments of the day, a good laugh, or even a brief nap, may seem simple daily occurrences that are the good stuff of life that we too often take for granted. Too often, we are waiting for something big to land in our lap, but while we are waiting, we miss some of the crunchy goodness. Simple pleasures are often the best.
Playing with your dog in the first snowfall of the season or watching a seagull soar are just two of the magical moments to savor, treasure, and truly appreciate. These are moments that cost nothing and are beyond any kind of currency.
There is a great deal of kindness out there out but much of it gets silenced by louder voices. Many of the soft voices may not get heard, at first, but in time, with commitment, can lead positive change. Loud and noisy can only do so much, but one soft voice only needs to spark one other person to go viral. When the mission is right, everything can fall into place. Kindness isn’t in short supply, it just may need to be cultivated.
Hardships, shocks, tragedies, disasters, illness, deaths, and life tests will be with the human race as long as we occupy the planet Earth. The question for all of us is how often do you take the time to recognize those not so little moments of your life? It’s so easy to get caught up in daily life and forget to be grateful for those simple and little things. Practice gratitude today!