Parkinson’s Disease Blogs

********** ********** This week the NY Times reprinted an article about balance training, which is probably an overlooked area of concern for many people, whether they have Parkinson’s or not. From the article: “Balance training is an important but often-neglected skill, one that impacts both our longevity and our quality of life, beginning around age 40. A study in June by ... read more

“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style” Maya Angelou “Resilience is all about being able to overcome the unexpected. Sustainability is about survival. The goal of resilience is to thrive.” Jamais Cascio Introduction: The COVID-19 pandemic has changed how we look ... read more

First off, let me say I am not a Zen monk, nor have I been formally trained in Zen practices. It’s a lifestyle that started during my undergraduate college days with the reading of “Zen and the Art of Motorcycle Maintenance.” Since then, I’ve been studying and practicing regularly, but not fervently. I’ve heard that if one writes about Zen, ... read more

Ten years is a long time to fill a self-care toolbox, but mine will never be complete, and the same tool will never be at the top. I have favorites, however, and one is my regular therapy session. Whether it’s in person or through telemedicine, I’ve come to depend on it. Months ago, my therapist and I discussed the stress ... read more

When the clock struck midnight on March 13, Dad turned into a pumpkin, sprouting vines for ears and orange skin as a protective barrier from the world. That day completed his seventh full decade on the planet, and I imagine it gave him insight into the number of days he’s experienced. His prince could come at any moment, lifting him ... read more

********** ********** I’ve blogged before (click!  click!  click!) about the table tennis club near where I live in suburban New York.  On Wednesday nights it hosts a gathering of ping pong enthusiasts with Parkinson’s disease for an hour of exercises, ping pong rallies, and related activities.  Nenad Bach, a rock musician from Croatia, started the ball rolling, and after ... read more

So what exactly happens when a full-time caregiver gets sick? Needs to take a well-needed day off? Can’t perform the necessary tasks of caregiving? As full-time caregivers, some crazy questions run through our minds. For example, how will my husband, Arman, who was diagnosed in 2009 with early-onset Parkinson’s disease at age 38, manage without my constant support? Who will get ... read more

Doing what you love and are passionate about pays off far beyond money! #MotivationMonday The post Doing What You Love and Are Passionate About first appeared on A Soft Voice In A Noisy World. ... read more

“Tentative efforts lead to tentative outcome.” Epictetus “Patients should have rest, food, fresh air, and exercise – the quadrangle of health.” William Osler Background: The function of our spine, all the bones and muscles, and associated tissues connected to this region are crucial for everyday life. A prevalent injury or pain that many people typically have is usually to some part ... read more

Recently, I discussed the dreaded dangers of despair. This darkness is, in many ways, linked to a loss of self-worth, something that happens with Parkinson’s disease. It happened to me. I had a bad “Beast” day that overlapped with my evening “off period” and felt sick with an intestinal virus. A perfect storm triggered intense miserable feelings. That happens frequently. ... read more

It doesn’t make sense. Physicians go and train for years in order to competently treat patients. Billions of dollars are spent on facilities. ... read more

Dr. Peter Tass, a professor of Neurosurgery at Stanford University, thinks so. Yesterday, Dr. Tass spoke to my Sunday Mornings with Twitchy Woman group on Zoom. He started with some history about vibration therapy. One of the first therapies to be used for Parkinson’s Disease was vibration therapy using a vibrating chair and/or a vibrating ... read more

“The mind, in addition to medicine, has powers to turn the immune system around.” Jonas Salk “As you begin to heal the inner you, you alter your immune system.” Wayne Dyer Introduction: The current blog post is focused on reviewing an immunomodulating action of an extract from Ashwagandha. Furthermore, I will comment on the use of Ashwagandha for treating Parkinson’s. ... read more

********** ********** If you have Parkinson’s and are taking carbidopa-levodopa in a pill form, you may find that after a few years you experience “off” periods where the drug doesn’t seem to work. Enter Inbrijia, which is powdered levodopa that you inhale.  According to a recently-published article (“recently” = March/April, 2023), “Levodopa inhalation powder is an orally inhaled dry ... read more

I was reminded that I have an obligation for young onset and newly diagnosed with Parkinson’s Disease, who might learn from my experience. I am dedicated, after 40 years of living with Parkinson’s disease, to offering assistance and benefit to the Parkinson’s community. The post For Young Onset and Newly Diagnosed with Parkinson’s Disease first appeared on A Soft Voice ... read more

One of the most challenging nonmotor symptoms of Parkinson’s disease is fatigue. When I think about the word, a poor night’s sleep comes to mind, resulting in a day of being tired afterward. Or fatigue might result from a long week at work or a stressful life event. For my husband, Arman, who was diagnosed with early-onset Parkinson’s disease in ... read more

Editor’s note: This column briefly discusses suicide. Please find resources for help at the end. No one prepares you for the enormity of the loss that comes with a chronic illness compounded by getting older. My ability to bounce back has fallen through the floor, leaving me groundless and searching to make sense of life. “Grief associated with chronic illness, ... read more

Celebrating with Nonna I was going to a party last weekend to celebrate my girlfriend Gina’s mother’s 91st birthday.  Nonna, as we call her, was full of smiles and hugs.  The party was hosted at a beautiful home in Orange County and lots ... read more

Last week, I met with congressional staff to share my Parkinson’s story and gain support for the National Plan to End Parkinson’s Act. As an advocate, I often teach, write, and facilitate support groups, but this was my first experience with public policy. According to the Michael J. Fox Foundation for Parkinson’s Research (MJFF), the National Plan to End Parkinson’s ... read more

First I wanted to extend a sincere thank you to Hanh Brown for inviting me onto this podcast, for your pointed questions and for giving me the opportunity to address your audience. It was an invigorating discussion that I am sure many people will be able to learn from. However, I did want to point out one aspect of ... read more

“Everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way.” — Victor Frankl This quotation was shared with me by a dear friend, a therapist with over 20 years of experience in grief counseling. After many conversations with ... read more

Friendship makes life better! #MotivationMonday Speaking of friendship, my friend, Larry Gifford, co-founder of PD Avengers is presenting... The post Friendship first appeared on A Soft Voice In A Noisy World. ... read more

“Patience and fortitude conquer all things.” Ralph Waldo Emerson “I know of no higher fortitude than stubborness in the face of overwhelming odds.” Louis Nizer Overview: Recently, I reviewed a clinical trial involving ablation of the globus pallidus by focused ultrasound to treat Parkinson’s (click here ... read more

Anything that causes the body or mind to be off balance, shifted away from its baseline state of homeostasis, will create problems. This is especially true with Parkinson’s disease. As I move deeper into midstage Parkinson’s, the experience of being off balance is more intense and lasts longer, and more attention is required to shift back. Midbrain structures, notably the ... read more

As you get older, three things happen. The first is your memory goes, and I can’t remember the other two. Norman Wisdom Does this happen to you? You read something interesting on your computer. You try to find it later and can’t remember where you saw it. Now it is nowhere to be found. It ... read more