Category Archives: Education & Support

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.

Healthline Selects ASoftVoice.com Three Years in a Row as a Top Blog for Parkinson’s Disease!

Healthline Best Blogs Parkinson's Disease 2017I am so honored, humbled, and proud to announce that for the 3rd year in a row, Healthline has recognized my blog, http://www.Asoftvoice.com, as one of the best Parkinson’s disease blogs!  I enjoy blogging and sharing my experiences and thoughts with my readers. It means a  great deal to me to know that my site may help in some small way! Thank you for reading my posts and coming to my site! I hope that I can continue to offer the content that you enjoy and find to be of assistance.

5 Tips Parkinson’s Patients Should Know

Nutrition matters

Summer color and flavor

Last week, I had the opportunity to speak to a wonderful audience with Parkinson’s and their care partners, in eastern Virginia. It was a marvelous exchange of information and emotions. Parkinson’s disease comes with so many unwritten rules. Trying to find all that you need to know about this illness, all in one place, may be frustrating to collect. There is so much to remember and so much that you might forget. Staying on top of Parkinson’s disease, symptoms, medications, and health maintenance, is a full-time job!

The following are 5 pieces of knowledge that you will want to remember:

  1. Is your neurologist a movement disorder specialist? If you have Parkinson’s disease and your neurologist isn’t a movement disorder specialist, you may want to see if there is one in your area. Movement Disorder Specialists complete extended training to focus on neurological disorders like Parkinson’s disease.

  2. If you are taking antibiotics, your medication’s effectiveness may be hindered dramatically. I can speak from experience that after taking antibiotics for my tooth infection, I saw a huge decline in the efficacy of my daily regimen of Parkinson’s medications.

  3. Don’t forget that if you are on Sinemet and you are protein-sensitive (protein in your diet may interact with your Levodopa), protein may decrease the full benefit of your dose. You may want try taking your protein later in the day or evening. Timing your medications for optimal benefit is part science, part art, and part luck.

  4. When I am able to lower my stress level, I have found that medications work better, I feel calmer and more peaceful, and see less of my symptoms.

  5. Eat smart and healthy! Talk to your doctor about how to improve your gut health.

News May Have An Impact!

Hyperbole on television, the evening news, politics, the Internet, and especially late night shows, is more common than ever. Our exposure to the dramatic and the end all be all is becoming a standard occurrence. Every day we wake to a new dilemma that involves “the greatest”. “the best”, “the most tremendous”. It is a contagion that gets ratings, sells newspapers, and is the marketer’s tool of choice. Watch any infomercial pitch and you are sure to hear hyperbole.

Hyperbole is ingrained in today’s messages. Usually, the message is louder and more shocking. Drama ensues.

A few years ago, I tried an experiment to catalog the many messages that I received from viewing 2 hours of one of the cable news channels. What follows are most of the crises discussed by the news team. I’m sure that I must have missed a couple. You’ll notice that most of these topics are not of the positive nature. I think that this proves that the daily messages that we are exposed to may very well have a direct connection to our thoughts and our feelings.

Here they are:

Train bombing, Missing Dolphins that were raised in captivity, Heavy rain, City Workers Steal Donated Items for Hurricane victims, Earthquakes, Sexual Abuse of a sports star, NASCAR Fight, New Orleans Health Care Crisis, Rising Oil Prices, Missing college student, Metro fire, Hurricane evacuation, Drought, Murder, Kidnapping, Corruption in government, Sex offenders, Train derailment, oil prices, poverty, inflation, drowning, mold and spore death, robbery, plane crash, home destroyed, stock loss, computer hacking, balcony collapse, contaminated water, abandoned animals, Cancer, lack of potable water, terrorism, taxes, forest fire, thunderstorms, Space shuttle disaster, and nuclear weapons.

If this is what you hear and see in 2 hours of reporting, imagine all the exposure your brain and entire emotional system are forced to process.  If your system is compromised the negativity of these stories could have even more impact.

It might be an experiment worth attempting. Try shielding yourself from the barrage of news that is unavoidable and mostly unchangeable, to see if all aspects of your illness shows improvement. Consider a respite of time for yourself and those close to you. Maybe by doing something to counteract just one of these issues, a positive change might come.

Nothing is better than hyperbole-bad joke alert.

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

Remembering Those Before Us!

PD Tulip

As Parkinson’s Disease Awareness Month comes to a close, as one well too familiar with this illness, I am compelled to bring awareness to those who have left us in the struggle. I am so very grateful to have known them and to have shared their stories and their lives. Losing friends, whether it is from PD or not, is a pain that I dread. Yet, death is a fact of life that none of us likes to talk about or truly accept. I am so grateful for the friendship and acceptance that our PD community continues to share. I truly hope that all 12 months become months of Parkinson’s Disease Awareness–not just one!

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