Those of us living with Parkinson’s disease and have a caregiver or care partner to assist us, may overlook or take our helpers for granted. Take the time to show your love and gratitude for all that your caregivers do for you. Show your support and make them aware of your appreciation and the changes that they make in your life. This is a thank you to all those selfless people who make life easier for those who need assistance.
Here are some tips for you and your carepartner/caregiver:
- Caring-Taking care of another can be a rewarding and spiritual adventure that can bring our relationships closer. In any relationship, there are caregiving challenges that will require patience, understanding, compassion, empathy, and possibly, even more patience.
- Stay Vigilant-You, the caregiver, are the cheerleader, coach, and trainer, all in one, for a team that may or may not show up. It is your responsibility, as a caring helper to be observant and to ensure that you not over tax yourself. You must see that you take respites and time for self-refreshment.
- Appreciation-My wife, Angela, is the most caring, most selfless, most generous, and most thoughtful person that I have ever met. Acknowledge and do your best in thanking those making a difference in your life. It’s so vital that those caring for us know that they are valued.
- Limits-If carepartners fail to monitor and maintain their own health, it is vital that those who care about them step up and say something.
- Watch for Burnout-Continuously caring for another takes a toll on body, mind, and spirit. If a caregiver overextends themselves, they are likely to face health, sleep, and stress related illnesses.
- Self-Care-Caretaking for yourself, even for a small part of your day can be calming, centering and help to keep you healthy. Keeping your identity and getting time for yourself is a health must for you and those around you. Just a few minutes a day can rejuvenate the entire body.
- Taking Your Time-Pay close attention to any changes in how you interact and communicate. If you find yourself on edge, quick to react, and overly sensitive or emotional, take a few moments to scan yourself and the situation. Just finding a quiet spot like an office nook to try some deep relaxing breathing may quiet things down.
- Knowing your Limits-This requires knowing one’s self. Monitoring your condition is as important as the patient’s status. As a team, if the caregiver can function well, the patient sees those benefits as well. Taking care of yourself is the best gift that you can give to those that you love.
It’s hard to take care of others well, if you aren’t well. Take care of yourself and thank you!
Rock Steady Boxing and my coach, Alec Langstein (https://rocksteadynova.com/), have made me stronger, fitter, and quicker. There is a definite and noticeable improvement in my mobility, agility, and balance. When I am hitting a heavy bag, I will hit it hard but when given the chance to hit with someone wearing focus mitts, I always hit harder, faster, and with more intensity. There is just something about the human interaction that makes me want to step it up a little and to put in even more effort. My coach and my boxing mates motivate me to do my best and to push myself to excel.
Rock Steady Boxing, three days a week, has made a very noticeable difference in my stamina, my overall condition, and my life. I am in the best shape of my life, if you don’t count the Parkinson’s disease—it sounds hard to believe, but it is true.
Finding What Works For You
Motivating words and cuing from my coach, my care partner/spouse, or even a concerned bystander can help me to work harder and find strength that I didn’t know was there. Music moves me, makes me box harder, focus better, and picks up my spirit, all at once. Digging deep down for strength has taught me that if I push myself, just a little more, I may be able to do a little more than I thought.
I encourage everyone with Parkinson’s seeking inspiration, motivation, and an exercise program to check out Rock Steady Boxing in their area. Finding that right exercise, therapy, or practice that feeds your spirit, is so important. Don’t wait or stop trying to find what works for you—time is precious!
Epic sports comeback stories are reminders for us all that sometimes the underdog wins. When in the face of adversity, when pressed, the team that you discount will surprise you and overcome the odds. Sports teams, like the Washington Nationals Baseball Team proved so many supposed experts and sports journalists wrong. The Nationals won the wild card series and went on to take the World Series from the Houston Astros in game seven. The Nationals (@Nationals) future looked bleak after the Astros won game five. Somehow, what looked like an unfathomable task, turned around.The team rallied to fight back and won to go on to the definitive game seven and win away from home.
Sports emulates life. Washington celebrates the accomplishments of the Washington Capitals hockey team, the Washington Mystics women’s basketball team, and now the Washington Nationals. All three have brought the DC area great excitement and energy. This remarkable baseball team found a win just when it needed it and thrived when their backs were to the wall. Like magicians, they somehow manifested what they needed at just the right time.
“Sometimes, it’s fun to do the impossible.”
We all face challenges in our lives that look insurmountable but if we hold on to the inspiration and belief that we can do something amazing, we may very well go beyond our limits. Walt Disney said, “Sometimes, it’s fun to do the impossible” and that’s what the Nationals achieved last night.
Congratulations to the Nationals for their amazing win!
I have hobbies: I write, I read, I travel, I photograph, I do Reiki, and I collect shark’s teeth. Shark’s teeth are elegant, silky, shiny and smooth. They come in all shapes, sizes, colors, textures, and tones. Just like people with Parkinson’s disease, all the teeth are totally unique and full of character. The teeth are technically a waste product of discarded chompers that are fossilized over long periods of time. Some are black, brown, gray, speckled, multi-toned, sharp, dull, serrated, or pointed.
I can’t explain the connection that I have to these tiny but beautiful pieces of art. Nature and time have created a cornucopia of remarkable masterpieces. Some pieces are almost gem-like, worthy of display and adornment. Often, their beauty is overlooked, underappreciated, and cast aside because beachcombers fail to recognize what is right in front of them. They fail to identify the magnificence and uniqueness of the diversity of each and every piece. The teeth are results of wear and tear from years of natural forces, while being tumbled through swirling water and abrasive sand. The varieties of sharks combined with the range of conditions affecting the teeth, create a product that is easily underappreciated and often overlooked.
Diversity, it is to be respected and upheld, for without diversity, the world would be boring and tasteless. The splash of colors and striations throughout some of the teeth are due to minerals and variations from the water’s varying pH level. These imperfections in the teeth, add beauty and character, plus they make each tooth memorable and one of a kind.
It takes a fresh perspective to look at something so common, with new eyes. We must look deep and see what is there and not be influenced by what others may want us to see. Some will try to influence what we see. Most of us know what is right and what is wrong. Appreciating these teeth took realization and a level of understanding. I see their beauty even if some do not.
Ben Franklin is quoted to having said:
“Do not anticipate trouble or worry about what may never happen. Keep in the sunlight”.
This quote speaks to me when discussing Parkinson’s disease or any illness. Living our best life now, prepares us for a better life in the future. For many of us who try to live in the moment but sometimes slip into predicting the future, we create unnecessary worry, fear, and anxiety. Procrastination for taking care of ourselves now, only delays our future wellness.
There are actions that we can take to prepare for our future physical health, financial health, mental health, and spiritual health. Some future planning can be very helpful in reducing future anxiety.
Our creative and active imaginations can run away with innumerable variations of what our future self will look like. Put a hold on that thinking and focus on the now. Our futures are variable, undetermined, and largely up to the decisions that we make, right now. Fate, destiny, karma, and the universe are most likely going to intervene as well, so let the winds blow and hope for the best, but don’t fret over the outcome, especially if it hasn’t happened, yet.
The quote also refers to the ‘sunlight’, something we all need but many of us with Parkinson’s are susceptible to skin problems. Due to the way our medications may impact our skin to sunlight, it is so important to apply sun protection to our skin, avoid direct sun exposure, monitor your skin, moles, and marks for any changes that might be a red flag to rush to your Dermatologist.
Franklin was focusing on staying positive and keeping a positive attitude for the future, in his quote. This is a message for us all to remember when we look to the future. The unknown isn’t to be feared but should be a fresh opportunity. The future may be different than we expect it to be, but it doesn’t have to be negative just because it is out of our control.
Trust, faith, hope, and diligence are four key components to seeing your way through any health challenge. Personally, they have made my 30 years with Parkinson’s disease more than just sustainable. Living well with Parkinson’s disease takes a variety of skills that must be honed and used. Before I get to trust, let me express the essential weight that faith and hope play when facing illness.
Without faith and hope our internal drive shuts down and leaves us vulnerable to only worsen our condition. We all need to visualize a path for our future, whether it is a leap or a small step. Your path is yours alone and only you can determine the scope of your vision.
When I speak of trust, I mean the belief in oneself as well as believing in others. Trusting that if we follow our gut, listen to our inner voice, and do what we know in our head/heart is a big part of making a good decision. There is much more, though. When it comes to making an informed decision about your medical condition, it is best if you’ve done the research as well. You may want to consult those around you for their opinion.
Trusting your doctor’s decisions, his or her pharmaceutical suggestions, surgical outlook, or any other decision will require your educated consent. You have the free will to reject or accept your doctor’s suggestions. Trust can only go so far when questioning your doctor. You must weigh the pros and cons of the proposed medicines and possible procedures. Providing cogent reasons and facts for why you are adamant about going against a doctor’s wishes needs to be thought out and be thoroughly researched. Depending upon the severity of the recommendation, a second or third opinion may be needed, despite the trust.
Diligence means making use of your time and taking care of yourself. There are things that you can do for yourself that even your doctor can’t. Maintaining a healthy lifestyle and keeping a schedule take discipline but can be very helpful when structuring your day. If you take medicines every day, structure is crucial to stay on time when administering medicines.
There was a time when we didn’t question our doctor’s advice, but with greater access to information and a better understanding of therapies, nutrition, exercise, diet, meditation, reiki and more, there is real opportunity to work with your doctor. As a constant seeker of information about improving your condition, you become a resource for your doctor and are empowered with knowledge that may unveil new options for your future.
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.
Expression and making our voice heard is hard enough but if you throw in a neurological wrench like Parkinson’s disease, a whole host of challenges can arise. Some of us speak softly while others may find it difficult to form words or sentences. Our words are often judged be it vocabulary or elocution. But, real expression goes beyond the boundary of words as the transcendence of understanding relates to us through the mediums of photography, oils, pencil, music, film, video, and a host of other outlets.
How we interact with the world is only limited by our imagination. Through the medium of painting, viewers and appreciators experience the work at a gallery or museum, but this is limited access. Paintings gather deep and powerful feelings and yet limit a very particular sector of the overall population. Whether you are a viewer or creator of art, our understanding of the medium and the message make a difference in the impact. There is no doubt that the artistic personality of anyone stifled by illness is at a loss without the therapeutic reward of a creative medium.
Just as a dancer feels the urge to leap and twirl, those with limited mobility and restricted movement may need to express themselves in a manner beyond their media of choice. Bottled creativity may be wasted and untapped. The frustration and built up anxiety of sustaining our message or messages, only adds to feeding the powder keg. When done right, awareness and understanding can come about, through our expressions. Finding an outlet for any sensory message and making one’s “voice” heard is a human necessity, like breathing.
Photography, for over 40 years, besides the written word, has been a favorite medium of choice. Every photo that you see on this site, for the past 10 years was taken by me. Capturing a moment in my life or nature through photography is gratifying and almost Zen-like. When I find myself in a mountain valley or a sun-drenched beach, my focus becomes nothing but the beauty around me.
Those of us with limited options for expression must delve into exploratory mode to uncover the medium that we think fulfills the message that we mean to convey. This is art therapy. Offering creative solutions or even simple solutions can make a difference in a life.
Recently, I have been the recipient of kind acts from those who I don’t know. I am grateful. It warms my heart that an Etsy store owner gave us a beautiful serving spoon as a gift when we bought a book from her. Unprovoked, out of the blue, it was simply a kind act that touched both me and my wife.
Touching other’s lives, whether it is directly or from afar, can change the direction of one’s day or one’s life, depending upon how long you hold on to that feeling. Kindness begets kindness and perpetuates goodwill. It feels good to know that you have made another human being feel good. Kindness comes at anytime and can be displayed anywhere. Here are 15 ways to consider passing on kindness and making those around you and those not so close a little happier:
- Share at least 1 genuine compliment with anyone you encounter in person or online.
- Do a little more for someone than what they asked, if you see that they are in need.
- Buy a homeless person a warm drink and a blanket on a cold evening.
- Keep an eye out for animals that may need medical care or shelter from the weather.
- Start a Go Fund Me page for someone in dire straits.
- Take time out of your day just to listen to someone who needs to be heard, without criticism.
- Offer your expertise to the less fortunate at a reduced rate or for free for your services.
- Join a non-profit board to help get an organization off the ground.
- Buy a cup of coffee, a morning sandwich, a side of fries, or a cookie for the person behind you in line.
- Give the person in line at the grocery store with 1-5 items, the right of way and let them go before you.
- Offer a stranger a smile, a laugh, or just a kind word of encouragement to make their day.
- Be a mentor, a friend, or just be a good listener to those seeking your counsel.
- Offering compassion and understanding to one in need is a wonderful experience.
- A phone call to alleviate a neighbor’s loneliness or sharing homemade cookies with the family down the block can change lives.
- Be kind to yourself and share that feeling with those around you.
Sometimes just being a good listener is enough. Just helping one other can create a chain reaction of goodness. When we assist others, we help ourselves in the process. Be creative in how you make a positive impact in another’s life.