Category Archives: Education & Support

A Time For More Compassion!

Today, I have a slight deviation to my usual positive message for an expression of frustration and a plea that I strongly feel needs to be expressed. Consider this my contribution to advocacy:

Congratulations if you are watching and reading the world news and can remain calm. I for one, am unable to digest the vitriolic, bombastic, childish, unproductive, hateful, remarks coming out of our nation’s capital.

When I was a child in the 1970s and 1980s our greatest fear out of Washington was the threat of nuclear war. The fear generated countless classic Hollywood blockbusters and the story slowly faded in the background, until now. The threat was probably there the whole time, but it did not remain on the front page and now, in addition to the chaos of the Trump White House, the threat of climate change, and the shake-up celebrity marriages, it makes one ponder just what to do?

If you are dealing with Parkinson’s or any disease, this is the last thing that you need on your plate. Healthcare, doesn’t mean much, until you need to access it. Our Congress, Senate, and President are entitled to full lifetime health coverage for little or no cost. It is more than a nice perk. They don’t need to vote on a healthcare plan for themselves, they’re just fine, thank you.

As for the rest of us, who actually, could use affordable healthcare, many of us are left dangling in the wind and waiting for a solution. It isn’t pretty, sexy, or exciting, but it sure is needed. I have never seen our government at such a standstill as it is at this time. A stagnant Congress and a President in turmoil leave the millions of people in need of affordable care under undue duress and the inability to move forward.

I know of many friends and fellow people with Parkinson’s who have to make the decision to cut back on their grocery bill to be able to pay for this month’s medication bill. It shouldn’t have to be that way. Sacrificing from your already reduced food budget to eke out enough for some or all of your medications is a sad and scary trade off.

Therapy caps have created a huge problem in limiting coverage for appointments for those of us who benefit from occupational therapy, physical therapy, speech therapy and rehabilitation. These outpatient services keep many of us out of the expensive doctor’s offices, crowding hospitals, and keeping patients active in their community.

I wish I had an answer. I wish I wasn’t so frustrated. I wish someone would hear our voices!

Book Review: Parkinson Voice Project

Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

My many thanks  to my friends at the Parkinson Voice Project in Richardson, Texas for this generous review of our second book!

Book Review by LOUD Crowd® Member Carol Brandle

TITLE: Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook
for Body, Mind, and Spirit
BY: Angela and Karl Robb

Having a workbook to accompany the best-selling Parkinson’s book, A Soft Voice in a Noisy
World, provides an excellent wellness tool for individuals or group discussion. Questions in the
workbook are closely paired with chapters in the book. Additionally, some questions shine light
on new ideas, such as complementary therapies like Reiki, massage, acupuncture, and
reflexology.

Karl Robb brings the same positive attitude, hope, and strength to this workbook as to his
book, A Soft a Voice in a Noisy World. Exercises which reduce stress and reaffirm strength can be
done as individuals or in communication groups, such as The LOUD Crowd® groups at Parkinson
Voice Project. A caregiver or partner might use the questions to strike up meaningful
conversation with the affected person, whether Parkinson’s is the health concern, or some other
health conditions. Either format will help you balance the connection between mind, body, and
spirit.

It’s apparent that Angela and Robb write from a wealth of experience as they direct
questions to sensitive issues, such as “What are you willing to do to help yourself?” and creating
a timeline to improve communication with a health care provider. Angela was honored in 2015
as a White House Champion of Change in Parkinson’s Disease. She and Karl also author an award winning
blog, http://www.asoftvoice.com


Angela and I have been fans, friends, and Board members of the Parkinson Voice Project for several years. We encourage anyone unfamiliar with this organization to learn about the wonderful work that they do.

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!

Nature Heals!

I have just returned from a working vacation in the mountains of North Carolina. The experience proved to be nothing short of amazing, as I saw an improvement in almost all my symptoms! Strength, stamina, balance, gait, sleep, cognition, and productivity were all improved and recognizably noticeable.

Nature has a healing property. Just to be surrounded by the abundance of flowering, fluttering, and stirring plants and creatures can reunite you with your connection with the planet. In this modern world, we begin to lose that connection with earth and sky, only to focus on flat screens, texts, and our on-screen accounts.

Once leaving the bucolic beauty of the lush green forest and coming back to city life, I find myself wondering if this is my healthiest decision. Returning to the sights and sounds of nature re-invigorated me–I found it to be a struggle to return to civilization, albeit, at this time, a necessity. Don’t forget to garden it, walk in it, swim in it, or just be in it–don’t lose your connection to Nature.

Summer Reprise – “Motivation”

What keeps you motivated?

What gets you out of bed every day?
What makes you happy?
What inspires you?

Every day may be about small victories.

They count.

Be proud of your achievements.

Don’t discount yourself or what you accomplish.

SaveSave

SaveSave

Guest Blogging for PatientsLikeMe #MoreThan Campaign

I am so excited to be part of the @PatientsLikeMe #MoreThan campaign! I recently wrote a blog posting for the PatientsLikeMe blog, which you can read here. I encourage you to tell the world about your #MoreThan story via your social outlets. Sharing your story can help inspire, motivate, and educate. Showing the world that we are #MoreThan our illness is a powerful reminder that those of us dealing with illnesses have families, hopes, dreams, and goals just like everyone without this additional challenge. There is something very powerful about one’s personal story along with a photo. Making your voice heard is crucial for awareness, unity, and community! Thanks to @PatientsLikeMe for this opportunity.

#MoreThan Parkinson's PatientsLikeMe - Karl Robb

#MoreThan Parkinson’s PatientsLikeMe

Eating Fresh and Organic–Trusting Fresh!

Eat your veggies!

Fresh!

Now is the time to eat all the healthy greens and fresh produce that you can. Canned and frozen vegetables may be okay when fresh isn’t available but, fresh peas, squash, corn, and beans are simply the best! Support your local farmer’s markets, local growers, and co-ops. Encourage organic and no-pesticide growers! Fresh is best!

6 Warnings of Parkinson’s and Summer!

Be aware of the sun’s intensity and extreme heat!

  1. Enjoy A Beautiful Sunset!

    Protect everything! If you are taking Sinemet, exposure to the sun may cause you to burn more easily! Wear a hat and sunscreen everything that you don’t want to burn.

  2. Stay hydrated! Staying hydrated is not just good for the body, but your pills may function better as well.

  3. Hot or cold Many PD patients, me included, can easily overheat on very hot days. For some reason, we don’t always self regulate our body temperature at peak performance. Pay close attention to your sweating and thirst.

  4. Watch your salt–Too little salt may cause orthostatic hypotension (dizziness when getting up or lying down) and too much can cause high blood pressure, find a balance and ask your doctor.

  5. Most of us are low on vitamin D! Have your vitamin D level checked. Sun helps with D, but sun ages and burns. Dairy has D but be careful with protein and your meds.

  6. Moderation and body awareness will help keep you sun safe. Be sun smart and careful out there! Talk to your doctor about these issues. I am not a doctor and these are suggestions, not medical advice. Be well!

Comfortable Routines

A comfortable routine  is not always a bad habit.

Cats love it! The only real problem with routines is when you sacrifice an opportunity to maintain the routine. If the cycle that you are in is working for you, then by all means keep it, and don’t let go, but if the routine has gone stale or you see a need for correction, it might be time for a new tack.

Preserving the Smile

Parkinson’s Disease can take away the very basic but vital skills that we treasure and sometimes take for granted. Facial masking, or loss of obvious facial emotion can make identifying a Parkinson’s patient’s state of emotion very hard to read, by observation. Due to muscle tightness and rigidity in the jaw and facial muscles, some patients find it difficult to smile.

Just taking the time on a daily basis and scrunching your face in the mirror, wiggling your tongue back and forth, and squinting your eyes and face can be a great way to keep the face a little more limber. That’s what I do!

A smile is not to be wasted nor forgotten. Use your smile and share it with the world. Sometimes we forget to smile and the power that comes with it. If those facial muscles are a challenge for your smile, do what you can to work to keep those facial muscles as limber as you can and keep that bright smile. A smile is a viral gift that often comes back, when shared with others.

We shouldn’t have to, but Parkinson’s disease may make us have to practice smiling, instead of just doing it naturally.

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