Life is what happens between neurology appointments.
We don’t talk about this much but facts are facts. The best medical treatments for PD can do no more than relieve neurological symptoms. Your medications buy you some time without PD mounting a full assault on your daily life. Without well targeted treatments, that assault would be devastating. Your neurologists can’t cure your disease but can modify its impact on you.
However, your neurologist can’t give you directions for using that time treatment buys you. The quality of life that follows is entirely up to your discretion.
One way to spend the time good treatment buys you is to direct your full attention to that bright future when there will be a cure for Parkinson’s. A cure will come; we all know that. All one has to do is sit and wait, doing nothing more as time passes. Monitor the Internet for the latest breakthroughs, religiously search PubMed, but most importantly, wait patiently and don’t let anything move you from your chair. Life passes you by, of course, but that is just the cost of keeping one’s eye on the future.
Another approach might be to keep one’s eye on the symptoms that are still there rather than being reasonably satisfied that that a significant number are muted. Remind yourself that you have gotten a bum deal, that Life has not been fair, and that you didn’t deserve this. Spend those good moments with a chip on your shoulder and growl in your voice. Life passes you by, of course, but at least you aren’t wasting it on groundless optimism.
Another, perhaps better way to use that time your neurologist buys you is to focus on those precious minutes. Make a decision to use them wisely and completely. Talk with family and friends about how you can dip a toe in the stream of life again, then do your best to wade back in. Think about those things that make your life uniquely yours, those things that give it quality. Be aware that the symptoms will come back and that the disease will become worse over time then resolve not to dwell on either fact. Envision your life as an exception to the rules of Parkinson’s because you are choosing to make it so. Life passes you by, of course, but it will be a life well lived.
Life happens between neurology appointments. The gift that comes from proper treatment is yours to use in whatever way you choose.
The arrival of a new year brings pressure to change aspects of ourselves we determine need improvement- the infamous New Years Resolution. For a person with PD or their partner, the notion of making a resolution may provoke feelings of pessimism. If the disease gets worse over time, what point is there in resolving anything? What can a resolution of any kind possibly bring when the future is inevitably looks so bleak?
Try a resolution not to see the future as so bleak.
I am not talking about delusionary thinking nor am I urging hopelessly sunny optimism. Neurodegeneration is a fact of life. No amount of resolve to slow, stop, or reverse it will change that. However, the psychological overlay we bring to any chronic illness can be a more disabling factor than neurodegeneration will ever be. When we are disposed to see a bleak future, we are treated to fulfillment of our expectations.
Research has demonstrated that men and women who maintain even a small focus on gratitude weather life challenges better than those who are not able to find gratitude. Gratitude is a subjective sense of well-being that can be developed when it is actively pursued. It is not ignorance of or running from life problems, including PD. Rather it is an active resolve to find one or more things a day brings that one can feel grateful for.
In my coaching practice, I ask my clients to keep a gratitude journal. Sometime during the course of the day, I ask them to write down at least three things they are grateful for. I have yet to meet a person who could not find three tiny things that make them feel better during the course of the day. There are days when this will be a challenge but challenge is not impossibility.
Finding areas of gratitude may be difficult at first, particularly when you have weathered years of frustration with your disease. Early attempts may be as simple as feeling gratitude for being alive so one can attempt to keep a gratitude journal. Or it may mean being grateful for loved ones. My experience is that every body learns to find that little something that has made the day richer, more enjoyable, or even unique. The exercise works, if you do it every day. And it is better that you write it down so you can review past moments of gratitude.
Ultimately, you will observe a journal of possibility in the face of a disease that produces feelings of chronic dread.
Resolve to start your gratitude journal today and let me know if it makes a difference!
We are all used to thinking about Parkinson’s as a movement disorder but rarely do we consider that it is a communication disorder as well. As it progresses, PD steals a person’s voice, literally and figuratively.
Most people are aware of the changes in voice output that are so common in PD. The voice softens (hypophonia) and articulation of words can become compromised. Establishing a presence in any conversation can become challenging, as everyone with advancing PD learns.
However, it is rare for us to consider voice in its more figurative sense, as our presence in the world. It is easy to forget that voice is also defined as our agency or interaction with the world to communicate thoughts and emotions or achieve specific results. Voice allows people to notice and attend to our presence as when we “give voice” to a thought or “voice” an opinion. When we are in agreement with others we speak with the one “voice.” We listen to the “voice of authority” and “voice” disagreement or dissent. It is only when we think of the figurative voice that we are able to understand the profound effects PD can have on our most human of interactions.
For example, PD effects our vocal prosody, the rhythms and intonations that color our spoken words when we convey a thought or message. As the disease progresses, voices tend to become more monotonic and far less expressive. This can make someone with PD sound uninterested or unengaged in a conversation even when this is not truly the case.
PD also causes masking and the loss of spontaneous movements so essential to telling others what is going on inside us. With masking, many subtle facial expressions can be lost. Blinking is diminished, sometimes leading to what others perceive as an unengaged stare. Family and friends rely on these tiny gradations in our facial expressions as a connection to us and their absence can cause those closest to feel that are being put at a distance. This distancing can be amplified when one’s body doesn’t shift periodically, the hands rest in the lap, or there are no head movements signaling one is following a conversation.
Treatment teams tend to overlook the figurative voice, leaving the person with PD frustrated and communication within the family blocked. It is often helpful to coach the person to become as expressive as possible in work and social situations. It is also helpful to train the partner to assist the person by providing feedback when communication is reduced.