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It’s World Parkinson’s Day

April is Parkinson’s Awareness Month

I am 53 years old and was diagnosed with Parkinson’s disease at the age of 23. I have made it my mission to provide Parkinson’s awareness through my 12 year old award winning blog, www.asoftvoice.com by sharing lessons and information related to this illness.

Thirty plus years with Parkinson’s has taught me a great deal about living well with this chronic condition.

 Here are 10 things I want to share with you about Parkinson’s disease:

  1. No two people with Parkinson’s are identical. Every patient is unique and may require a personalized treatment plan.
  2. Often, the first symptoms of Parkinson’s can be a loss of sense of smell, constipation, or wrist or shoulder discomfort.
  3. Tremor, mobility issues, and facial masking are probably the symptoms that are most identified with Parkinson’s. It is believed that symptoms may begin 10 or more years before visible symptoms might be recognized.
  4. Some people with Parkinson’s disease may show no external symptoms but can have difficulty with memory and other cognitive issues, digestion, pain, eye problems, or depression.
  5. A positive perspective, a good attitude, staying flexible, and a sense of humor can help to deal with stress and anxiety.
  6. Embracing exercise (Rock Steady Boxing), speech therapy (SPEAK OUT!), yoga, reflexology, reiki, meditation, massage, can help to reduce anxiety and stress to calm both mind and body. Don’t stop looking for a combination of therapies that work best for you!
  7. Parkinson’s disease is not an old person’s disease. I have had Parkinson’s for several years prior to my diagnosis and that was over 30 years ago.
  8. Dyskinesia (rapid, uncontrolled movement) is not due to Parkinson’s disease itself, but it is a side-effect of the medications.
  9. Protein can reduce the efficacy of some Parkinson’s medications. Consult your doctor for more information.
  10. Find a neurologist who is a Movement Disorder Specialist (MDS). They have specialized training in Parkinson’s disease.

I’ve found that by staying active and taking a proactive approach to my Parkinson’s, I’ve been able to live well, pursue my writing career and published two books, lecture, travel extensively, and continue my passion for photography. A diagnosis of Parkinson’s has not been the end for me but given me a new purpose and a new direction for my life.

Does the Parkinson’s Profile Exist?

I have been fortunate to meet hundreds of people over these thirty plus years with Parkinson’s disease (PD) at numerous events. After a while, you notice more and more about yourself and those around you. It’s a question that I have been asking for years: Is there a firm personality profile, specifically for people who get or are more likely to get Parkinson’s disease (PD)?

Many of the neurologists that I have shared the idea with, have told me that there wasn’t a profile, while an occasional doctor thought that I might be on to something. I have always had a curious mind and having met so many people from around the world with PD, it has given me an opportunity to make some non-scientific observations and even a rough hypothesis. Here are a few of my thoughts: People with PD are mostly well-educated, professionals, type A, over-achievers, in high stress work, curious, creative, and are outgoing people. People with Parkinson’s are often risk takers and not risk averse. They appear to be determined and are driven to a result. From personal experience, people with Parkinson’s are rich in questions, have an insatiable curiosity, and are quite clever.

What if there is a Parkinson’s profile? What does it mean? Could it help lead us to helping people even before they begin showing symptoms? Parkinson’s disease affects people in so many unique ways that it has been discussed that it could be more than one disease. If PD is more than one disease, it could take several varying solutions to get this illness under control?

The complexity of the human brain and body is unimaginably daunting. It’s inner workings, connectivity with multiple systems, and the diversity of chemical reactions and maintenance is hard to fathom.

In the past thirty years, while I have seen numerous studies, trials, pharmaceuticals, surgeries, procedures, and therapies, however, I have yet to see a targeted individual plan that works for everyone with Parkinson’s. Maybe, if there were an understanding of what our universal link or links to this disease were, we could break it down and eliminate what it is that unites us all, illness-wise.

The brain and all its’ complexities have proven to be a formidable opponent in giving up answers. Parkinson’s disease is a mysterious and complex condition that is going to take multiple approaches to unraveling its’ secrets.

Healing Becomes a Prime Time Show

Healing Becomes a Prime Time Show

The world is shifting faster and even more progressively to complementary medicine, than I would ever have imagined. While late-night television channel surfing, I found a program that appears to be both informative and comforting. This new show is on a channel that I rarely watch. Home to numerous reality and family related dramas, TLC is not a station that usually offers programming that thrills me. I will admit that this show really interests me.

I came across a new show called, The Healer. Let me say that as a Parkinson’s patient and a reiki master, I use the term “healer” very rarely and very carefully. I had to see what TLC was doing with someone who had the ego and gift of restoring one to health. To use the word “healer” takes on a serious responsibility.

Charlie, an Australian entrepreneur, has been using his “gift” for several years and seems to deliver results with varying success. Charlie admits that results may depend upon the malady and the severity of it. I respect that he takes his gift so seriously. He freely admits that some illnesses may not respond well to his energy work, while some may react better. I also like that he shares his gift at no charge.

Doctors on the show are amazed, without explanation, yet appear to be willing to make the mind-shift that energy work may have merit. They are witnesses of the inexplicable. The doctors don’t deny that after Charlie’s treatment, something substantial has just occurred for their patient. Skepticism is understandable from the medical community, but when they see results from complimentary therapies, they should be willing to acknowledge them. One of the biggest dilemmas facing energy workers and the medical community is that if they both worked together, the patient may very well see surprising new results and at minimal cost.

I have seen slightly over one episode so far. I am an energy worker. I find the delving and unveiling of energy work on prime time television as a huge leap in the right direction! Shows like this demystify and shed light on the benefits of touch. This television program helps to show that hands on work has much to offer. In the United States, patients are less likely to pursue energy workers. In my opinion, the reason that many doctor(s) discount or don’t understand the potential benefit of working with energy practitioners is that little to no research has been funded.

Not until seven years into my diagnosis of Parkinson’s disease, at the age of 32 was I introduced to Reiki. From day one, I went from skeptic to believer, immediately. After experiencing what I had so easily discounted, it turned out to be something life-changing. Reiki hasn’t healed me to where I am void of symptoms.  I do know, not scientifically, that Reiki has made my life considerably better, increased my quality of life, and slowed my Parkinson’s progression over these last 20 years!

What does Thanksgiving mean to you?

For me, the holiday resonates with special memories of the whole family watching parades, football, and eating my late mother’s exceptional cooking. Those memories are treasures that line the walls of my Thanksgiving box for the rest of eternity. Those days are long past, but I am still fortunate to make special new memories with dear friends who mean so much to me. Times change, life moves quickly forward, and I am forced to accept change.

I think a keystone of this holiday is about one thing only, gratitude. In the hustle and bustle of shopping, cooking, pre-Christmas preparation, and Black Friday sales, the meaning of Thanksgiving gets blurred.

This year, I have lost more dear friends, neighbors, and close Parkinson’s disease colleagues than I can count on my fingers. Loss of loved ones, both friends and family are so bittersweet as I rejoice in having been part of their lives, yet mourn that those days have ended.

As the year quickly ends, I am ever so grateful for my wife and best friend, Angela, my wacky and hilarious chocolate lab, Lily, my relatives all across the United States, my dear Reiki and Parkinson’s families, and you the reader/subscriber who takes time out of your busy day to read my latest blog post. I am grateful!

Thank You!

Happy Thanksgiving!

Summer Reprise – “Trying to Understand Stress as It Relates to Parkinson’s Disease”

I will be re-releasing this and a few other posts from my archives that I think are worth revisiting:

If you are a frequent reader of this blog or have read my books, you know that I talk a great deal about the impact that I believe stress plays on Parkinson’s disease and the related symptoms of the illness.  Make note, I am neither a doctor nor am I a clinical researcher. I have recently found this fascinating research showing signs of scientific evidence to validate more of what I have experienced and believed to be true – stress may have a significant role in Parkinson’s.

 I have seen benefit and strongly believe that if you are able to lower your stress level, you can improve your symptoms of Parkinson’s disease. There has to be a logical reason why when many of us go on vacation or get deeply involved in a project that engrosses us, we sometimes see improvement in our condition.

How often do you find that when your stress is lower you have unused medication at the end of the day because you found that you didn’t need it?

Does this happen to you when you go away to a place less full of stress, like the beach or the mountains?

If stress does play an important factor in neurological disorders, and it looks very possible, then the science of stress needs deep exploration—quickly.

 I encourage you to read this paper online and judge for yourself. I think that you will find some observations that need further investigation.

To read the paper for yourself, go to http://jnnp.bmj.com/content/85/8/878.long

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