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, 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.
Tomorrow, James Parkinson‘s essay will be 200 years old. Since his discovery, modern medicine has made strides with L-Dopa and Carbi-dopa breakthroughs that have become the long-standing gold standard of regimens. Not to diminish the importance of the Levadopa breakthrough, but that was over a half a century ago.
New drugs and procedures are slowly trickling out, but no one drug that I know of has impacted Parkinson’s disease as that of L-Dopa. To this very day, since my 1991 diagnosis, I have found benefit from this most amazing life-changing drug. I am very lucky to report that my dosage, even after all this time, is a lowly 3 pills (25/100) a day. I aim to keep my pill consumption to the utmost minimum, but only time will tell.
I am hopeful but impatient as I plead with any pharmaceutical company, researcher, doctor, or anyone connected with creating new innovations to the neurological world that a huge need is there, right now, and an escalating problem that will impact so many. I would offer detailed numbers, but at this time, as we have no hard numbers, for lack of a registry devoted to Parkinson’s patients, the numbers just aren’t gathered, yet.
On World Parkinson’s Day (4/11/17), like millions around the world, I will be participating in #UniteForParkinsons. Please join us to spread awareness via social media to the world about Parkinson’s disease. Visit https://www.worldparkinsonsday.com/#world-parkinsons-day for more information!
If you have Parkinson’s disease, you probably didn’t get it overnight. Getting better probably won’t happen overnight, so don’t expect a quick fix. Be patient and stay open to trying different complementary therapies and diet changes to see what might work best for you.
Reducing the stressors in your life and any trigger to stress that leads to stress can make a huge difference in your symptoms.
Do you ever notice that when you are having a great time (vacations, a hobby, an outstanding meal) that you may miss a dose of medication due to the fact that you didn’t need it? Isn’t it strange to find pills leftover at the end of the day because your body didn’t need them?
Don’t let a diagnosis of any illness brand you! I don’t believe the words “chronic, degenerative, and progressive” should ever be used for anyone! Don’t think of yourself in those terms!
Hope, tenacity, determination, strength and creativity are more than words. Being stubborn can be of help!
Don’t let denial delay you helping yourself! Every day is an opportunity to be better—whatever that means to you.
Positive thinking really can reinforce good overall health. Focusing on the negative is unproductive and only weakens the connection of the mind, body, spirit connection.
In Parkinson’s as well as other illnesses, just because one individual responds well to one treatment or drug doesn’t guarantee the same result for others.
Devising a health plan and staying open to solutions outside your comfort zone that aren’t overly expensive or invasive are worth consideration.
The issue of “control” plays a major role in the Parkinson’s world. Knowing when to let loose of it and when to take charge of it will make your life much easier and less stressed.
These are just a few of my observations from living with Parkinson’s disease for over 30 years. I hope you find them to be of help and encourage you to share what have learned with me and my readers. Remember, I am not a doctor and this not medical advice. Consult with your physician or neurologist before making any changes. Thank You!
On occasion I get requests to endorse, promote, or mention products. I am careful what I mention on this site and I take it very seriously.
A little over a month ago, a very inspirational and motivating teacher and fellow Parkinsonian from the Midwest, Dora Leonard, introduced me to a song that she and her son, Jeremy Leonard, collaborated on together. The song, I Will Choose, came from a poem written by Mrs. Leonard, put to music created by Jeremy, and sung beautifully by a local singer in her church, Shawn Christopher, who helped her bring the song to life. She is generously donating all sales to Team Fox.
After hearing the song for the first time, I was moved and my wife was brought to tears. That’s what music is supposed to do.
I Will Choose is an uplifting anthem of hope and dedication to staying strong and positive whether you face Parkinson’s disease, another illness, or any obstacle that may crop up.
If you seek a piece of music for a boost of motivation look up I Will Choose by Jeremy Leonard (feat. Shawn Christopher) on iTunes.
There is still so much mystery that comes with the human body. The mind-body connection is interwoven and not fully understood. It makes sense that what we eat, drink, think, hear, feel, and say has consequences that most probably play a role in our overall health. Maybe, just maybe, through the benefits of modern science and complementary therapies, each of us may find our unique regimen.
This is from my book:
Positive thinking and hope can help people get through the most traumatic of events. Feats of superhuman strength in times of crisis, heroism under severe pressure, survival under extreme conditions, and the ability to push the body beyond its breaking point are just some of the unexplained medical phenomenon that science can’t fully dissect. Why shouldn’t everyone be capable of such feats?
It is ingrained in western culture not to question the authority of the doctor. There is no doubt that doctors provide a vital and life-saving service but there are times, especially if you are dealing with life and death situations, that you have the right to question your doctor. If you rely solely on your doctor’s advice and treatment you may very well be cheating yourself of improving your condition.
Although they don’t scream it, scientists and doctors don’t fully understand the total complexity of the human body and brain. It is a lack of understanding that I believe repeals the doctor’s right to project into the crystal ball and predict a patient’s future outcome.
You must do your part in getting better. Feeling better and getting better begins with a mind shift that you know that you can get better. The medical community in general believes that people with Parkinson’s only get worse–period. They provide little hope for improving one’s condition and add that this illness is both chronic and degenerative. I have yet to hear of a doctor who prescribes hope and positive thinking to his patients. Positive thinking and hope get people through amazing traumatic events every day. Feats of super-human strength in times of crisis, heroism under severe pressure, survival under extreme conditions, and the ability to push the body even beyond the breaking point are just some of the unexplained medical phenomenon that science can’t fully dissect.
Programming can be as dangerous as it is powerful. When a patient is diagnosed with any illness and the doctor tells a patient that there is “no hope” , the negative reinforcement can have devastating consequences on the patient’s whole being. Had the doctor said, “We have no medical answer for your illness at this time, I suggest you investigate other potential therapies that may benefit you that western culture has yet to embrace but shows great promise.” Of course, you probably won’t hear this from most doctors. Shifting the standard outlook from grim to hopeful could revolutionize medicine and improve the lives of the ill seeking a cure or just a better life. There is power in keeping positive.
5 Ways To Get More Positive
1. Avoid negative influences of those around you!
Try to identify what and who drains your energy and see if you can’t change the way you interact. Learn to control stress through deep breathing, yoga, and meditation.
2. Moderate your television and media!
Avoid tragic news that only weighs you down and has any spiritual or uplifting value. Turn off reality shows that don’t make you feel inspired. Focus on you and what you can change for the better.
3. Visualize yourself getting better every day.
Seeing yourself getting stronger and having that picture in your head is a good place to start for improvement.
4. Clear your mind and body as best you can.
Finding a therapy like Reiki, massage, acupuncture, reflexology, exercise, or other modality may set you on a path to feeling better clearing out toxins in both the mind and body.
5. Help someone else.
When you help others you feel good about what you have accomplished. Making a difference in someone else’s life makes an impact on yours as well.
These are just a few ideas of how to be more positive but I’m sure that you can come up with many more.
Someone that I respect recently wrote an Op/Ed piece that I felt shined a more negative light on people who maintain a positive outlook on people dealing with Parkinson’s disease. My interpretation of the piece inferred that Michael J. Fox calling himself “lucky” or anyone who considers themselves lucky to have Parkinson’s, to be a “Pollyanna”. Pollyanna, (as I have read accounts and in full disclosure not read any of the books) went through extreme suffering but was grateful for what she did have. I see this trait as nothing but admirable. If seeing the glass half full as opposed to half empty, empty, or even dirty and cracked is Pollyannaish then paint me as a “Pollyanna”. Having lived over 25 of my 44 years of life with this challenging illness, I am not naive nor am I uneducated. I am well aware that this illness robs millions of people around the world of their ability to move, to work, or to function as they choose. The mind seems to get a mind all of its own and neither the mind nor the body wants to respond to one another.
Parkinson’s symptoms of tremor and rigidity appeared in my life at the early age of 17. I spent over 6 years without a diagnosis, never knowing what I was dealing with or how fast it might progress. Was I scared? Sure. Did I feel sorry for myself? Only, after I got booted out of Outward Bound for being considered a health risk to the rest of the hiking party did I feel a real loss, because of the bonds that I had made and my failure to complete what I had started. Thankfully though, my dismissal from hiking the rugged mountains of North Carolina led me to my last 3 or 4 doctors who finally diagnosed me with Parkinson’s disease. Not until years later, did I realize that it took my leaving the group to get diagnosed and move on with my life.
The diagnosis of Parkinson’s disease for most people, can be sheer shock and devastation, or sometimes provide a sense of relief such as, “I had a feeling that it might be Parkinson’s” is heard from someone newly diagnosed who was looking for the culprit behind the symptoms.
As a support group leader, a frequent speaker, an active advocate for Parkinson’s disease issues, and as an attendee at several conferences a year on issues related to Parkinson’s disease, I can honestly say that those people dealing with Parkinson’s disease who keep a positive outlook, appear to be doing far better than those who are less positive. Staying positive is a choice.
Once I received a diagnosis, I had an idea of what I was up against. Usually, people with early or young-onset Parkinson’s disease symptoms progress slower than older patients. The Disease can impair both mind and body, cognitive function, memory, speech, swallowing, balance, gait, posture, and numerous other challenges. Parkinson’s can unleash an array of physical and mental complications and with side-effects from Parkinson’s medicines almost every patient can have a unique combination of symptoms . Some people with Parkinson’s show little to no obvious physical impairments but may suffer strictly from cognitive issues or vice versa.
The really good news is that as bad as this illness is or may seem, there are numerous therapies, medications, exercises, doctors, and classes, support groups out there that can make a difference in your life and help you change your life for improvement. While I don’t discuss DBS (Deep Brain Stimulation) surgery, I have seen it help many friends and for some it has not been as positive.
Parkinson’s has taught me to appreciate every day, to appreciate and to truly be grateful for the good things and the simple pleasures in my life. Whether one has Parkinson’s disease or is in perfect health, the realization that a positive outlook not only makes you feel better but makes those around you feel better as well. I didn’t choose to spend the majority of my life with Parkinson’s disease, but I did. Sure, illness throws roadblocks and detours in the path, but that’s where the ability to adapt and creativity come into play. Any illness can change how you see yourself and may get in the way of your perception of who you really are. This is an opportunity to take a hard look at your life and observe that maybe a change in lifestyle is in order. Reducing stress and altering your life for the better in diet, exercise, and complementary therapies on top of neurological care can have a tremendous impact on mood and well-being .
I hope and wish for a cure for all of us. Until the puzzle of Parkinson’s disease is solved, I believe the best course of action is to stay informed, take the best care of your body and mind as you can, take your meds on time, eat low on the food chain, eat organic, and get your rest.
If every day were sunny and warm could you truly appreciate the loveliness without experiencing those cold gray damp days of winter? The balance of life exposes us to pain because without it, there is no knowing pleasure.
Take stock in the fact that people care about you. Focus on the simple things in your life that you can appreciate, like having a comfortable place to sleep, clean air and water, the beauty of Nature around, and so many more details of life.
I would like to know what you think.