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Adapting

I am 45 years old and have probably had Parkinson’s Disease since I was 17. I have had plenty of time to study this illness and put it in perspective. I would be lying if I were to say “PD doesn’t change your life”. Sure, it changes your plans, but it doesn’t have to ruin it.

I meet hundreds of people with PD a year. Most young onset patients accept that their lives must change and that they need to find good medical care. Many of the older newly diagnosed patients tell me how they had plans and now those plans have changed.

Nothing in our lives is for certain. Whether you are healthy or not, the one certainty is that things change. Plans change. The more flexible we are, the easier it is to adapt to change.  As much as we would like to believe that we are in control of our lives, circumstances outside of our control come about and we are once again forced to adapt.

Adapting does not mean you stop growing and learning. Transition is a natural process that we need not fight. Taking on this transition with a thirst for knowledge and a desire to improve oneself in mind, body, and spirit, will serve you well.

Try weeding out the stressors in your life that deter from your peace of mind. There are negative interruptions that bombard our minds, be it billboards, emails, talk radio, television news, or other distractions that upset our calm. Today, try limiting some of these outside influences and see what happens.

Just Let It Go!

It’s what you tell yourself when a thought or emotion comes up when meditating: “Just let it go!” Sure, saying it and the actuality of doing it is different but, it becomes reality, the more you do it. Meditation and the acknowledgement of letting go is a practice, and it is the benefit of  that practice that comes with the practice. So often in our lives, we are asked to let go, be it at the loss of a loved one, the breaking of a promise,  an unkind act, the releasing of a dream, resentment or guilt, or some deep seeded emotion or thought.  

Letting go takes practice, discipline, and intuition.  It takes timing. Knowing  what to keep and what to release  sometimes take a leap of faith into the unknown. It requires bravery and will.

In this New Year, whether you hope to shed pounds, bad habits, clutter in your life, or just the old of 2011, remember to let go of what you don’t need or just doesn’t benefit you. That’s what I’m hoping to do.

Happy New Year!

Stay Calm–It’s The Most Wonderful Time!

Happy Holidays And A Wonderful New Year!

As wonderful as this time of year can be, it brings stress with it. From decorating to other’s standards, to getting the house in shape, to finding just the right gift, I offer these 3 pieces of advice:

1. The gifts shouldn’t mean that much. Enjoy time with friends and family. Take time for you!

2. Try to get some quiet time. Parties are loads of fun, but take some down-time. Take time for you! 

3. Be kind to yourself. Remember to breath when the stress rises. Deep cleansing breathing works wonders. Enjoy yourself and keep hope for the New Year!

Happy Holidays from Karl Robb, Writer at ASoftVoice.com! Thanks for reading my blog!

Give & Take

I paid the price for trying to save some time on the return from my vacation to Seattle. In the hope of maximizing my schedule, I elected to take a red-eye, only to return with a nasty flu bug that has cost me a week of productivity, discomfort,  and general health. Even worse, my best friend and bride, Angela, suffered a more severe version of stomach flu, thus disturbing her digestion and resulting in a close call with severe dehydration. The dehydration led us to an urgent care facility. It was not a night to relish.

I avoid emergency rooms, clinics, hospitals, or any place that houses needles or scalpels. Needless to say, when my spouse began experiencing stomach cramps, backache, nausea, vomiting, severe thirst, loss of appetite, and diarrhea, I knew it was time to punt and call on the medical community. Angela no longer could hold fluid down without severe cramping and/or nausea or vomiting. After 2 days of no sustenance and minimal liquids, this was getting more and more worrisome. We both worried about the other’s malaise and colorless face. We tried to take care of one another in our stupors but neither of us barely had the energy to do anything but sleep and even that was a challenge, at times.

It was Friday night at 7PM when we arrived at the emergency care facility. There was a calm before the storm in the waiting room, for screaming children, bleeding noses, and paramedics would be by to join us shortly. There was no wait at the counter, as we explained why we were there.  We would explain at least 3 more times later to the doctor, nurses, and staff. Following the paperwork, waiting in the lounge, and watching a news story on an at large serial killer, I was anxious to see my wife experience some relief from her constant stomach and body aches.

After what seemed to be an eternity, we were called in and Angela received a gurney and sheet thinner than a tissue. She was unable to get comfortable and the staff did little to try. The gown was neither flattering nor thermally functional. Following several warnings to anyone who would listen, we explained that Angela’s veins even when hydrated were a challenge to locate, but with 2 days of severe dehydration, connecting with any fresh hemoglobin would take a detective with remarkable talent. After 3 nurses, 1 lab tech, and a doctor, Angela had bruises, needle holes, but no IV fluid bags that she needed so badly. Two hours of tension, frustration, and being in a hostile environment was enough for us.

We elected to scrap the IV, give Angela a dissolving anti-nausea pill so that she might take her own fluids at home, and get her resting comfortably back in her own bed. The pill broke the cycle and she soon was able to retain fluids and mended quickly. She still has the bruises from the needles that did her little good.  The bruises are slowly fading–the memory is still quite vivid.

An Interview with Author, Jane H. Davis

 Jane H. Davis is the Author of the new book, First Aid For Heroes. The book is the compelling story of the challenges Jane experienced as a nurse at New York’s Ground Zero on 9-11, as a wife, a patriot, and as a care-partner. Gary, Jane’s husband, has Parkinson’s Disease and battled Cancer as well. I am fortunate to know them. They are true inspirations.  I was able to ask Jane a few questions, and here are some insights from Jane. Thank you, Jane!

 If you are looking for a book to inspire, might I suggest First Aid For Heroes by Jane H. Davis?

You volunteered to leave your home in North Carolina, as a nurse, to go to work in New York City right after the 9-11 tragedy. What compelled you to put yourself in this situation and how did your family react to this decision?  I was literally compelled to do more. It was something deep within me, a deep seeded feeling that I needed to help out on a much larger level. To watch the devastating news on the television all day or to answer phones at the local Red Cross Station, was just not enough for me. My family was incredibly supportive and very proud of me for choosing to do this. Gary, my husband, was incredibly busy at Fort Bragg (where we were living) as he was commanding the post hospital, Womack Army Medical Center. He understood my pull, as he had seen it many times before with my volunteering at every military post we had been stationed. It was a hard decision though, as I knew the assignment would be for at least three weeks. My life on the military post was a very busy one as I was involved with many organizations and they were counting on me. Everyone gave me their blessing. I ended up working/volunteering at Ground Zero for six and a half weeks.

 

For those of us who never visited the massive devastation of the World Trade Center but saw it on television can you describe what your first impressions of the sights and smells that you experienced? It was if I had gone from color to black and white, similar to the movie ‘The Wizard of Oz’ but in reverse. The noise of Midtown Manhattan was what I remember when I entered the subway, but it was a totally different city once I exited in Lower Manhattan. The hustle and bustle of the big city seemed to be hundreds of miles away, it could have been in another state, another country, and it was only a short subway ride away. The first thing I noticed is that people were talking in hushed voices and quietly sobbing. There was a stillness in the air, a quietness, not like the cacophonous sound of Midtown Manhattan. I had to force myself to observe the devastation of Ground Zero, I knew that I could not start my volunteer job until I made myself look. The vastness of the devastation was so powerful, it looked as if I was in the middle of a war zone. I realized that the television could not capture the enormity of it, as it was 360 degrees of tragedy. Then the overpowering stench assaulted my nostrils. It was a smell like no other, and one that is hard to describe. I can still smell it and did when I recently returned to Ground Zero to pay my respects after 9/11/11. I know it was only in my mind, but I am amazed that the smell has lingered inside me.

Your book, First Aid  For Heroes, is a true and very personal account of many of the struggles that you have experienced from 9-11,  the death of your mother, feeling threatened by a stalker, being sexually harassed by a boss, moving your family across the world 18 times, dealing with your husband’s diagnosis of Parkinson’s disease and Cancer, and you continue to move forward and thrive. Where do you find the strength to overcome the hurdles that you encountered? I joke and say I have no choice, as my blood type is B positive! But on a serious note, life its a challenge, we all have hurdles we have to overcome. It is how we chose to do it, how we chose to make our way in the world. I want my children and grandchildren to know me as a strong individual that can overcome anything that comes her way. I want my husband to know that I am there for him through thick and thin and no matter what illness he may have that I will be by his side to help fight the fight with him. Where does my strength come from? That is a good question and the best way to answer it is probably from all of my life experiences and growing up and learning what works and what doesn’t. I just saw this quote on Facebook and it is so appropriate: “Every person from your past lives as a shadow in your mind. Good or bad, they all helped you write the story of your life, and shaped the person you are today.” Doe Zantamata. I have made my share of mistakes, but I have learned by them and haven’t wallowed in the negative aspects…that gets me nowhere. My goal is to keep growing, keep learning and to stay strong and healthy. How can I be an effective care-partner, wife, mother, grandmother if I choose otherwise?

What advice do you have for others facing challenges in their lives? Get involved. Be proactive. Know that there are others out there that are also facing challenges…you are not alone. There are many organizations to get involved with in the care-giving arena. Find a local support group in your area. I found a local Parkinson support group for my husband and myself and from that some amazing friendships have blossomed. I have also became involved in the Well Spouse Association, a nation-wide group that supports spousal care-givers in staying physically and emotionally strong. I urge people to connect, learn and grow from others. I urge those facing challenging times to please take care of themselves, whether it is physically, emotionally, or spiritually. Caregivers face so many challenges and many end up facing their own illnesses. One study shows that 11% of caregivers report that care giving has caused their physical health to deteriorate. I believe that number is much higher. I reiterate, take care of yourself… do not become a care-giver statistic.

To learn more about Jane and her book, go to:www.janehdavis.com.

All Charged Up

 I have little doubt that Neurological disorders like, Parkinson’s disease, may manifest emotionally, possibly triggered by a physical or chemical jolt to the body. The body’s electrical circuitry gets scrambled and disconnects with the circuitry of the mind. If you think of the whole human body as if it were a battery that holds a charge,  you are dealing with a complex and sometimes fragile network of functions that are all reliant on the body’s ability to send out current where it is needed. When the current is weak or broken, problems arise.

“Burnout” is a familiar term that applies to both body and electricity. When stress, work, lack of sleep, improper diet, depression, and all the other invasions of modern day society pile up, the body along with the mind will shut down. Some of us are wired differently probably through genetics and are capable of repelling some of these outside forces, thus evading illness and remaining healthy.

If the body is an energy center in itself and it gets depleted from outside, it only makes sense that the answer to getting the body back in synch is to recharge it. For thousands of years Eastern medicine has proven that energy work and spiritual practices have real world medical benefit. Only through therapies like Reiki, Qigong, Acupuncture, Yoga, and Meditation can you replenish what is lost.

One of the great mysteries of Deep Brain Stimulation (DBS) is why it works? As a therapeutic tool, DBS is a brain surgery discovered  to work by accident. No one knows exactly how it works or why but the electrical signals generated from batteries implanted in the chest sent through wires implanted in the brain disrupt certain signals going to the brain. This proves that we are one big power plant that needs maintaining.

Energy work is mostly free and painless. Time, some dedication, commitment, and some self exploration may be needed to educate yourself about what works best for your specific symptoms.  As unconventional and new agey as energy work may seem to some of you,  I ask this: What do you have to lose in trying one or more of these therapies? Even more so , what do you have to gain?

As overused as the metaphor of the body being compared to an onion is, if you imagine the moments of our lives, both good and bad, constructing our thoughts, emotions, and overall makeup, we are what feel, see, eat, breathe, think, hear, and drink.  Delving into the onion and locating the parts that need changing can be challenging and take some time.

 There is as much understanding of why energy work makes a difference as DBS , the only difference is that the energy work doesn’t require drilling in the skull or implanting batteries in the body. DBS is brain surgery and can cost as much as a small house. It would make sense to me that before one resorts to the option of implanting hardware in the body that he or she seeks the less invasive option first. That’s just my opinion.

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.

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