Monthly Archives: October 2015

ASoftVoice.com Reaches to 200th Post

200 blog posts and counting

200 blog posts and counting

This blog post is a milestone! I can’t believe that this blog posting makes number 200! I hope that this sight has brought you some thoughtful entertainment with a dash of spiritual infusion. It has always been my intention to provide the readers, both Parkinson’s disease related and not, a thought, a picture, or a story that might inspire or spark conversation. I love to hear from my readers and encourage feedback as I approach my march to 300.

In honor of this occasion, I am bringing back a few of my favorites from past years. I encourage you to search the site archives for more of my postings. Thank you for reading my blog and book, I appreciate you all!

Please enjoy these 10 past postings (click the title to visit that post/page):

Don’t Expect Everyone To Understand Parkinson’s!

It’s Only A Matter Of Time

April Is Parkinson’s Awareness Month!

Is there a Parkinson’s profile?

10 Medical Questions To Ponder – I Think

Picture Of The Week-PD Awareness Tulips

Exclusive Interview With Davis Phinney

Adapting

Opportunity To Inform

Why Did The Medication Stop Working So Fast–The Antibiotic Dilemma

A Look At Young Onset Parkinson’s Disease

If your first experience with Parkinson’s disease (PD) was anything like mine, I went into a state of shock, disbelief, and a spiral of “what do I do now” syndrome. That was a long, long time ago, here in this galaxy, not so far away.

Since then, I have had almost 28 years to digest and understand (or at least try to) what it means to face the diagnosis of Parkinson’s disease. While in my very first neurological waiting room I found myself, a 23 year old, surrounded by much older patients in wheelchairs with various conditions. At the time, I, like most of the public was positive from all that I knew that only the elderly get Parkinson’s disease. A few years after my diagnosis, it was bittersweet reinforcement from Michael J. Fox’s release of diagnosis that Parkinson’s was not exclusive to those over the age of 60. I would like to think the world outside of the Parkinson’s community has a grasp on the nuances of our Illness, but I think I would be wrong.

Many are surprised that I was diagnosed so young despite that the face of Fox has largely become synonymous with this Illness. Both,

Fighting for right(and candy) at a young age!

Fighting for right(and candy) at a young age!

he and I and many others that I know are not anomalies. We are young and we are a growing segment of the population with Young Onset Parkinson’s disease.

At the time of my diagnosis, I was said to be in the rare two percentile of patients. Now, according to the Parkinson’s Disease Foundation (PDF) it is estimated four percent of people with PD are diagnosed before the age of 50. It is estimated that 60,000 new cases are diagnosed a year and somewhere between 1 million to 1.5 million people in the United States are living with it. The truth is, until data collection is put in place, all these numbers are sheer speculation. To learn more about data collection for Parkinson’s disease and what you can do go to http://parkinsonsaction.org/our-work/data-collection/.

Neurological disorders largely remain a mystery mainly due to the sheer complexities of the human brain. Better government funding, a drive for expediency, better institutional sharing and cooperation about data, and a public outcry that urgency is required right now must be reiterated over and over.

10 Observations For People With Parkinson’s To Consider

Watching the road ahead!

Watching the road ahead!

  1. 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.

  2. Reducing the stressors in your life and any trigger to stress that leads to stress can make a huge difference in your symptoms.

  3. 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?

  4. 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!

  5. Hope, tenacity, determination, strength and creativity are more than words. Being stubborn can be of help!

  6. Don’t let denial delay you helping yourself! Every day is an opportunity to be better—whatever that means to you.

  7. 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.

  8. 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.

  9. Devising a health plan and staying open to solutions outside your comfort zone that aren’t overly expensive or invasive are worth consideration.

  10. 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!

Parkinson’s in color!

Parkinson's word art!

Parkinson’s word art!

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