Monthly Archives: November 2011

Getting Better

After my long history with Parkinson’s disease, I am amazed and overjoyed that I have had the ability to consistently improve and show signs of getting better.  I won’t tell you that there weren’t dips in the road as some of life’s roadblocks hit me and my progress deviated briefly, but part of staying focused on one’s own healing is to stay open and flexible in mind and body. 

I’ve had this illness at least 25 years of my 45 total years, so I don’t expect to get well overnight. My expectations are realistic. My body can only heal so fast. It took me awhile to get sick and it’ll take some time to get well.

Recently, a major network, I won’t say which, it begins with a “C” and ends in an “S”, did a story that I found incomplete, poorly researched, and all-in-all, just plain wrong. The story was that a positive attitude did not make a difference when dealing with major illness. Their argument was that modern science has proven that there is no basis for positive thinking to be either a deterrent nor a cure for sickness. I say it is rubbish. I know people who are better off and showing improvement  because they maintain a positive attitude. I am living proof . I think the producers failed to thoroughly research this issue as fully as they should have.

Even if science has shown that a positive attitude isn’t beneficial in fighting illness, which I know is false, who are they to try and dash the hopes of millions of people clinging to the hope of improving their condition? Maybe, just maybe, some reports and supposed news ought best be kept quiet.  On top of all the negative reporting that the news brings us, who in knowing this report does it really help? I, for one, am staying positive, because it works.

Ten More Apps That May Benefit People With Parkinson’s Disease

My first posting on Apps and Parkinson’s disease was so well-received that I thought I would share a few more:

1. Parkinson’s Drug Trials – is a clever little tool to research clinical trials and find information about research both past and present.

2.  ArtStudio-is a wonderful App to enhance your creativity and to expand your artistic expression!

3.  You Don’t Know Jack – is an oddball, quirky, outrageous, educational, irreverent, but entertaining trivia game show that you may enjoy.

4.  Everything-is a terrific App for listing whatever is on your mind and keeping it in one place.

5. PocketLife-is a sharp, well laid out calendar program that has a slick multi-calendar function to keep other people’s calendars as well.

6. WebMD-just keeps getting better!

7. PDLife-is an App made to monitor your Parkinson’s and to keep on track with your medications.

8.  Dosecast- is an easy to use App to keep track of your meds and doses. Don’t miss a dose and keep to your schedule.

9. AudioMemos-is a useful voice recorder App to hear your speech for voice therapy reasons or just for a voice memo or pure enjoyment.

10. PD Toolkit-an App from the National Parkinson Foundation is resource that covers a range of useful information from planning, symptoms,  diagnosis, and treatment.

See my other posting on suggested Apps at https://pdpatient.wordpress.com/2010/07/20/apps-to-help-parkinsons-disease/.  There may be a charge for some of these Apps.

If you have an App that you think is beneficial especially for people with PD, please let me know so that I can promote it. Thank you.

Parkinson’s Disease and Your Identity

As an advocate for Parkinson’s disease (PD) awareness and issues related to this illness for so long, it can, at times,  be easy to blur the lines of my identity and the disease itself. Losing one’s identity in the haze of illness may be comforting or even natural but, I am not my illness.

Healing begins once you take back those thoughts and feelings that you may have relinquished to the disease.  It’s about not giving in but making the necessary changes in your life that somewhere along the way, your mind and body may have not gotten what they needed spiritually or chemically. Now, your body is crying for change and the time has come to listen.

Listening to the mind can come in many forms, be it intuition, meditation, or self discovery, but however you get the message, calming the mind will serve you well on many levels on your road to health and healing. Self awareness comes through self-care. Once the mind is under control and focus is clear, attention to the body and issues of physical concern may be addressed.

Healing oneself may require discipline and dedication almost to the point of selfishness. Devotion to improving your condition is the jumpstart needed to taking back control in your life.

Don’t Label Me Or My Illness

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.

There Are Such Things As Miracles–PART 1

 Life on many levels can be difficult and challenging, whether one has Parkinson’s disease (PD) or not.  The added challenge of PD only accentuates the necessity of taking better care of oneself.  It is when we neglect ourselves or fail to listen to the cues presented by those around us that we miss important and even life-changing  messages that need addressing.

The older I get, the more I am beginning to believe that things happen in life for a reason. My belief is that somewhere in the happening  there is a nugget of wisdom to be mined. There may be an appearance  of  randomness  to our lives but in reality there really is true order.  Coincidences  are often messages  of unfinished business  that may need to be addressed.

Several years ago, a friend put me in touch with a Speech Language Pathologist, named Samantha Elandary.  Samantha founded what is now the Parkinson Voice Project, in Dallas, Texas, formerly the Texas Voice Project.  When I had returned from Dallas almost 7 years ago, I found my voice had improved from just a few days of therapy.  Time passed,  and this year I ran into Samantha twice at 2 different Parkinson’s events.  At the second event, she told me about how her voice program had evolved and she invited me to Dallas to see and experience the power of her voice program. As one who is fluently challenged, at times and speaks publicly, I accepted her offer to improve my speech,  fluency, and loudness.

I have been accused of being hyperbolic with my words on several occasions but what I saw for others as well as myself is nothing short of miraculous. People with PD and soft or weak voices were regaining their lost voice.  How easily we discount the importance of voice, inflection,  and the self-esteem that is attached to being heard and understood.  The Parkinson Voice Project is fighting to help people with PD regain and maintain their identity and their voice.

What I saw for myself was an increase in volume, improved clarity, and a fluency that I had not seen for years.  I saw people in the Parkinson Voice Project center smile with pride as their voice came back and tears of joy from their care-partner  because now their spouse could be heard. The old saying that you don’t know what you’ve got until it’s gone is true, especially in this case and for many of us if we don’t pay close attention we won’t realize that something needs fixing. For me, I am so grateful to hear such a dramatic change in my speech. I can also speak for my wife that she is so happy not to ask me to repeat myself.

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