Category Archives: Dealing and Healing Workbook

A Parkinson’s Wellness Checklist

Photo of a tasty tart by Karl Robb
Good diet!

Self-care is a topic that I talk about quite a bit, on this blog. During these changing times, it can be easy to forget wellness tools that we have in our toolbox.

In helping myself to remember to do my own self-care, I developed the checklist below and thought it might be a helpful resource and tool! You might consider using the list as a daily checklist to discover some helpful sites and be inspired to start or finish a project.

Wellness is an important part of our journey with Parkinson’s disease. I believe keeping the mind, body, and spirit in balance is a holistic approach to living well with Parkinson’s. This list covers these these 3 areas of wellness and allows to you to be creative with the items you feel drawn to add.

If you know your Parkinson’s disease resources well, you might share the list with those who are less familiar with available information. I hope that this is a tool that you can use to help yourself.

PD Checklist by Karl Robb author ASoftVoice.com

Does Masking Have A New Meaning?

Mask Up!

There is a common, unfunny, and overused joke about not playing poker with people who have Parkinson’s disease because many of us have reduced facial movement and it can be hard to read our expressions. This is masking, as I understand it. Sometimes the muscles for smiling just do not work well. Speech clarity and projection are vital to being understood. Being heard under a cloth mask when one has voice issues makes life frustrating for both the speaker and the listener.

Now, to make matters more of a challenge, add practicing social distancing, having a problem with your speech, having a softer voice, and placing a mask over that soft voice.  For someone with Parkinson’s disease, the combination of muffling the mouth, relying on just the eyes can be deceptive, and poor vocal projection, all add up to not being easily understood and worsens communications.

For some of us with Parkinson’s disease, our eyes are not as expressive or fluid as we would like, added to the tightening of facial, neck, and jaw muscles. Dry mouth, too much saliva, swallowing issues, and dental problems can all contribute to someone with Parkinson’s speech challenges.

Sight and Sound are Covered

Communication in a marriage is crucial and in this new COVID-19 pandemic of being home sequestered, the sharing of information is close and continuous. To maintain human interaction with family and friends by phone or new social technologies, takes a little practice.

Be sure that while under the fabric facial mask, (if your jaw is ok), to move your mouth, lips, and jaw. Exercising the facial muscles can add to your expressions. Do not just hide your face under the mask. Remember that you are going to have to speak louder, slower, and clearer, especially, with a mask covering your mouth. One more challenge to tackle. We can do it!

Tools and Resources

This pandemic has changed the world as we know it. There is no telling when quarantining will end and what will be the new normal. I have seen a few shining positives that have brought on what I hope will outlast the coronavirus outbreak.

After over a quarter of a century of advocating to Congress about the benefits of telehealth, your doctor visit by video has become a reality out of sheer necessity. Telehealth or telemedicine can reduce stress, anxiety, rush, travel time, germ exposure, and makes it easier for the carepartner. In trying times like these, heroes arise from selfless contributors, like the dedicated men and women facing the front-line of this virus, day after day.

As distance learning and remote access to information has quickly surged, I offer you a helpful list of ongoing classes, speech therapy, singing, relaxation, exercise, and socialization. This list of resources will hopefully help you to stay active, connected, and supported. Our list is a useful array of local, national, and regional online resources that may make your day, just a little better!

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.

The Missing Month–Where Have I Been?

If you are wondering where I have been or why ASoftVoice.com has had a month of dormancy, I can explain. I am finally capable of telling you just where I have been and the mystery, behind it. The mystery is not nearly as thrilling as this build-up, but it’s fun to write something different for a change. Writing a mystery has some appeal but this is neither the time nor place. I am happy to report that my tale is one of travel. Not too salacious, not too violent, but it does explain my absence.

I am back, after taking almost a month-long adventure-road trip to Key West and back to Northern Virginia. For about 3 weeks, Angela, Lily, the Chocolate Lab, and I explored the Southeast coast and sucked up the warm breezes, compelling sunsets, and miles of open road. Ripe with photo opportunities, my cameras were consistently clicking. Above is a sample and collage of just a few of the pictures that will be in my new gallery, on the website.

Unfortunately, somewhere along the way, we picked up a souvenir, called Flu-don’t pick it up. It is very unfriendly and may cause you to stop off at the Emergency Room on a Saturday morning. I did. A bad cough, a fever of 103.7, and body aches made for a hard-hitting attack. Slowly, I am on my way back and am feeling human, again.

The trip was great! Getting ill has been a setback, but I’m making my way back! Please subscribe, so you never miss the latest post.

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