Blog Archives

EverydayHealth.com Recognizes ASoftVoice.com Blog as One of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive!

EVERYDAY HEALTH logo www.everydayhealth.comRecently, EverydayHealth.com recognized ASoftVoice.com, as one of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive.

It is such an honor to be included with so many outstanding websites! Many of the chosen blogs on the list are included on our blog resource list. If you know of a blog related to Parkinson’s that we overlooked, please let us know and we will check it out! Thanks to EverydayHealth.com and to you, our readers! Congratulations to the other bloggers on EverydayHealth’s list and to every blog sharing their important story!

Accept Your Mission! It’s Not Impossible! Focus Your Energy, Wisely!

If you are embarrassed, sad, shamed, or lack self confidence about having Parkinson’s, I am here to tell you that you don’t have the energy or time to devote to such unproductive emotions. Stay strong! You have joined a community of amazing, caring, helpful people who are there to support you and encourage you. Spending time on activities that take you away from being your best will only deplete you more. Choosing to be positive and to be your very best can be a reality and not a mushy platitude!

It is up to you to make the first move. Admitting and succumbing to the realization that you need help is not weakness but new found strength. Helping oneself to learn about how others are surviving and thriving benefits all involved. This generous group of people with Parkinson’s and care partners are ready and willing to share their experiences of what has worked and what needs improving. There are tomes of great advice, educational videos, supportive medical experts, and organizations with helpful support groups and exercise programs! Be aware that your improvement and care all begins with your passion, diligence, and commitment to getting better.

I won’t say that being thrust into the world of Parkinson’s is easy and nor is it your first thought to just accept it and move forward. I had some dark days until I realized that my body, mind, and spirit were in jeopardy. My being is my responsibility. There is plenty of help out there, but you are your greatest resource. Now, build your team!

Parkinson’s is an illness that you do not fight, but work with, work around, and find solutions that work for you. In other words, Parkinson’s takes work! I, like you, am on a constant and continuous hunt for wellness or at the very least, some therapy, drug, exercise, or device to improve my condition. I wish you well!

Don’t Expect Everyone To Understand Parkinson’s-2018!

This was my first blog post 10 years ago–slightly updated!

When I was first diagnosed at the age of 23, I have to admit, the diagnosis of Parkinson’s Disease (PD )came as a relief. What I had convinced myself was a terminally malignant brain tumor was a chronic neurological deficiency of the neurotransmitter, Dopamine–that didn’t sound as bad. Sure, PD can be degenerative and rarely do people with PD get better, over time–but I will say I haven’t changed my medication for several years.  I am lucky and fortunate that my symptoms show a slow progression.

We expect our loved ones, friends, associates, and colleagues to understand our struggle with this difficult ailment. Parkinson’s challenges us all in different ways. Rarely, if ever, do two PD patients share the exact same symptoms. Those who are healthy and untouched by PD are incapable of understanding what it is that we endure with this mysterious and troubling disease. As much as we would like for those who are close to us to understand what it is that we are going through, it just isn’t possible.

Even if we live or work with someone on a daily basis, there is only so much that we are capable of understanding about what it is that they are going through. The best that we can do for any one is to be present, understanding, compassionate, and supportive. Supportive doesn’t mean that you can’t encourage better living and reminding those who you care about to exercise, eat healthier, and to get proper rest.

I’d like to know about your experience with PD. I plan to address issues facing PD patients like doctors, resources, medicines, cooperative medicine, health ideas, what works and doesn’t , Support Groups, PD Conferences, etc.

I hope you find this interesting and helpful.

Thank You!

Karl

Rock Steady Boxing–It’s so much more than just boxing!

I recently joined a Rock Steady Boxing class! The class and the instructor are wonderful! If you have Parkinson’s disease and haven’t tried the Rock Steady Boxing program, I encourage you to find the nearest program in your area. The camaraderie and encouragement amongst the participants is uplifting and inspiring.

The workout is tough, lively, active, loud, motivating, and rewarding. I hate to admit it, but I am getting older. I’m rediscovering muscles that I have not used for a good while. For an hour and a half, the boxers either move through a series of exercise stations made up of quick thinking and moving games, flexibility or core exercises, many of them borrowed from yoga focusing on balance, strength, posture, and mobility. The program is flourishing, as it should. It’s novel, fresh, and effective! This program does something amazing—it makes working out fun again, for me.

Rock Steady Boxing NOVA has been an experience that I did not expect! The whole class has bonded and become a unified group. Everyone supports the other and encourages their fellow boxers. Our coach and leader, Alec, is a charismatic and inspired young man who really strives to make improvements in our class’s lives. 

My first two classes, the workouts kicked my butt! I am happy to say that I can see an improvement in my strength, balance, and overall fitness. Rock Steady Boxing is a welcomed break in my day and week. I see the boxing as a moving meditation. It is a break that I look forward to, as well as seeing my boxing friends and putting on the gloves. I think this program builds your confidence as much as your body. Rock Steady Boxing is like a fast-paced support group that makes you sweat.

If you are looking for an opportunity to get a great workout, build some muscle, make some new friends, and pound some punching-bags, then I encourage you to try Rock Steady Boxing in your area to see if it’s right for you! 

Community Update – Events and Online Resources

Parkinson’s Awareness

ParkinsonsDisease.net Reaches 10k Likes!

If you follow this blog, you know that I have been actively posting on the new Health Union site, www.ParkinsonsDisease.net. What you may not know is that this site recently made a rapid climb to 10,000 likes! Here’s where you come in—in honor of this success, you have the opportunity to vote for one of the fine charities below to receive a donation, if they win the vote count. Encourage your family and friends to vote as well. Vote today by clicking this link and scrolling to vote in the poll!

  • Parkinson Voice Project
  • Davis Phinney Foundation
  • Parkinson Association of the Rockies
  • Parkinson’s Foundation (National Parkinson Foundation/Parkinson’s Disease Foundation)
  • The Michael J. Fox Foundation for Parkinson’s Research

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Parkinson Voice Project – Parkinson’s Lecture Series

The Parkinson Voice Project has launched a lecture series which features Parkinson’s experts talking about topics affecting our community. They hold this lecture each month and it’s live streamed for anyone in the world to attend. They also archive previous lectures so you can watch the lectures that are of interest to you. Visit https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1876 for more information about upcoming lectures and view previous presentations which include lectures on wellness, physical therapy, cognitive challenges, making a Parkinson’s diagnosis, and Deep Brain Stimulation.

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Virginia Education Day – October 7th, 2017
If you live in or near Virginia, I hope to see at the Virginia Education Day in Williamsburg on October 7th, 2017. I am a member of the planning committee. The event is being held at Fort Magruder Hotel and Conference Center. The Education Day is has a diverse mix of wellness information including presentations by physicians, people with Parkinson’s, caregivers, and allied health professionals. Click this link to see the conference brochure and click here to register for this event.

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Living Well Conference 2017 – Parkinson Foundation, Western Pennsylvania

Join Angela and me in November in Pittsburgh for their Living Well Conference 2017, where we will be presenting and facilitating two breakout sessions. Read this link for all the details. We would love to see you there! We will also be selling and signing our books and audio CD collection at both events—we hope that you can make it!

Positive Daily Living Sample Chapter from Dealing and Healing

The following PDF is an excerpt from our new book, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit.

We are excited to provide this collection of exercises and tools that we believe can benefit most anyone! Whether you are an individual, a support group, a social group, or a small informal group, we encourage you to try these exercises and to share it with those who you feel may benefit from it.

If you like this chapter and would like to purchase the workbook, it’s available for purchase online at Amazon.com and BarnesandNoble.com.

Dealing and Healing Chapter 29 Positive Daily Living

Chapter 29 Positive Daily Living

Parkinson’s Essay Turns 200!

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!

Five or More with Todd Sherer, CEO of The Michael J. Fox Foundation

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

Five or More…

My thanks to Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) for contributing to my question/get to know you experiment.

Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not.

Required questions:

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?

Italian – See next answer

 

What do you like on your pizza?

I’m a New Yorker.  Plain cheese, bent with the oil dripping onto the plate

 

Of the four seasons, which is your favorite time of the year?

Spring because baseball season starts. Go Mets!

 

How many World Parkinson Congress events have you attended?

3 – DC, Scotland, and Montreal

 

What are you looking forward to most in Portland, site of the WPC 2016?

Unfortunately, I am unable to attend this year but am looking forward to hearing all the reports from the MJFF team.  I always love the interactions on the exhibitor floor and hearing what people are really interested in and concerned about.

 

Optional:

Tell us something about yourself that we might not know about you that you would like to share.

I’m extremely scared of heights.

 

Where would you like to go, that you have never been before?

Hawaii – how about they have the next WPC there so I can go?

 

What is the Michel J. Fox Foundation working on that you would like to tell us?

We are working really hard to develop better diagnostic tests and ways to monitor disease progression through our Parkinson’s Progression Markers Initiative (PPMI) .  These measures are critical to allow the field to test new disease-modifying treatments – with the potential to slow the disease.  I’m excited that all the data from this study is made available to the research community in real time at http://www.ppmi-info.org.

 

 

Friday nature photo!

Awareness.

Awareness.

Shoes, Coffee, Advocacy, and WPC 2016

First thing:

I am NOT a paid sponsor nor have I been compensated for these comments:

I guess you could call this a “footnote”–okay, bad joke, but I think some of you with foot problems and balance issues, might just find benefit in trying these shoes. They are the cost of a good running shoe and they have a return policy if the shoes don’t work out: My only mention of these shoes here is because I have found them to be so comfortable–period. My wife and I recently discovered these

Comfort and Stability

Comfort and Stability

running shoes made to accommodate for more space for a wider foot. We each got a pair–she loves that her heel doesn’t hurt and I love the comfort and flexibility that it allows my toes. I can say that these are the most comfortable shoes that I own!  I just think this product should be known. I haven’t sold out and I won’t sell out. I will only share products that I use, find great benefit, and feel that they may have a positive impact on your life. The shoes came from altrarunning.com.

Second Thing:

I want  to commend my friend, Sonia Gow on organizing her first Parkinson’s Cafe! Her event was a smashing success as over 50 people in the Fairfax, VA,  area attended. The event was like a free-flowing support group and a great opportunity to share and catch up with friends. We are so lucky to have Sonia’s passion and vision for helping the Parkinson’s community so close by. Check out her site at  www.parkinsoncafenetwork.org. to learn more.

Third Thing:

My friend Jean Burns is bringing awareness to some very important concerns involving clinical trial participant and hospital policies. After you have read this, share it with friends and family. This is an eye-opener. Here is the article in US News World Report.

Fourth Thing:

The 2016 World Parkinson Congress registration deadline for discount is nearing (July 5), so register soon. Don’t forget about visiting the author Book Nook and Wellness Way while you are in Portland, Oregon. This event only happens every 3 years and as an international event in North America, this is a great opportunity to learn from doctors, researchers, practitioners, and patients across the globe. This is a wonderful opportunity to meet and learn  from neurological experts from all over the world. Go to WPC2016.org to learn more.

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