Blog Archives
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:
- No two people with Parkinson’s are identical. Every patient is unique and may require a personalized treatment plan.
- Often, the first symptoms of Parkinson’s can be a loss of sense of smell, constipation, or wrist or shoulder discomfort.
- 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.
- 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.
- A positive perspective, a good attitude, staying flexible, and a sense of humor can help to deal with stress and anxiety.
- 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!
- 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.
- Dyskinesia (rapid, uncontrolled movement) is not due to Parkinson’s disease itself, but it is a side-effect of the medications.
- Protein can reduce the efficacy of some Parkinson’s medications. Consult your doctor for more information.
- 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.
World Parkinson Congress (WPC) 2019 in Kyoto!
WPC Kyoto 2019
I have had the good fortune to attend 3 World Parkinson Congresses: DC, Montreal, Portland. The 5th Congress has been taking place in Kyoto, Japan #WPC2019. I have been listening to their official podcasts and highly recommend the first three days of podcasts: They are quite well done! The @WorldPDCongress brings the world of people together. This Congress brings together 55 different countries and 3000 plus attendees. I had the honor to be an official blogger for the 2016 Portland event. It is an amazing congregation of people with Parkinson’s, neurologists, researchers, care partners, sponsors, exhibitors, and demonstrations of what people around the world are doing to help themselves. For 4 full days, there are events presentations, panels, and discussions to inform, educate, and inspire. This podcast is hosted by Larry Gifford @ParkinsonsPod
Please take the time to listen to all the podcasts! This link starts with WPC Day 1 and the rest of the recordings will follow in succession.
Parkinson’s Disease Awareness Month 2019
Parkinson’s Disease Awareness – Together WE are ONE
The month of April is upon us and this means a month of Parkinson’s awareness! There is an array of events, fundraisers, lectures, walks, and more that are planned for April, around the world. If you or someone that you care about is looking for an event in your area, you may want to Google: local Parkinson’s events in my area, or visit your favorite Parkinson’s organization/charity website to see what they have going on, or consult your local support groups, hospitals, clinics, to see what you might attend locally.
We have updated our events page on this website for the speaking engagements that Angela and I will be presenting this month. If you are in the Northern Virginia area and have an interest in hearing us talk, please visit the 2019 upcoming events page and see what talk you think might interest you. We look forward to seeing you at one of the events on our list of future events!
Watch for more upcoming events and updates! You may want to subscribe to our site, to get the latest post fresh off the press.
In my 30 plus years of dealing with Parkinson’s disease and attending numerous events, conferences, walks, lectures, World PD Congresses, I have amassed an extraordinary collection of Parkinson’s disease related tee shirts which I will commemorate and share with you this April. This first tee shirt is sort of a mystery, but I believe it was created by my dear friend and Parkinson’s advocate, the late James Trussell. He was a dear friend and is greatly missed. He gave so much to the Parkinson’s community!
The shirt speaks of unity and strength–what a perfect message to start Parkinson’s Disease Awareness Month!
Watch for more tee shirts from my collection, this month!
Expression Choices
Expression and making our voice heard is hard enough but if you throw in a neurological wrench like Parkinson’s disease, a whole host of challenges can arise. Some of us speak softly while others may find it difficult to form words or sentences. Our words are often judged be it vocabulary or elocution. But, real expression goes beyond the boundary of words as the transcendence of understanding relates to us through the mediums of photography, oils, pencil, music, film, video, and a host of other outlets.
How we interact with the world is only limited by our imagination. Through the medium of painting, viewers and appreciators experience the work at a gallery or museum, but this is limited access. Paintings gather deep and powerful feelings and yet limit a very particular sector of the overall population. Whether you are a viewer or creator of art, our understanding of the medium and the message make a difference in the impact. There is no doubt that the artistic personality of anyone stifled by illness is at a loss without the therapeutic reward of a creative medium.
Just as a dancer feels the urge to leap and twirl, those with limited mobility and restricted movement may need to express themselves in a manner beyond their media of choice. Bottled creativity may be wasted and untapped. The frustration and built up anxiety of sustaining our message or messages, only adds to feeding the powder keg. When done right, awareness and understanding can come about, through our expressions. Finding an outlet for any sensory message and making one’s “voice” heard is a human necessity, like breathing.
Photography, for over 40 years, besides the written word, has been a favorite medium of choice. Every photo that you see on this site, for the past 10 years was taken by me. Capturing a moment in my life or nature through photography is gratifying and almost Zen-like. When I find myself in a mountain valley or a sun-drenched beach, my focus becomes nothing but the beauty around me.
Those of us with limited options for expression must delve into exploratory mode to uncover the medium that we think fulfills the message that we mean to convey. This is art therapy. Offering creative solutions or even simple solutions can make a difference in a life.
Who is paying the price?
I found this quote that I wrote a year ago or so. I had put it aside to use for a later date, and now is the time to release it:
Adversity can bring us together, but it is love that can unite us.
Without love and compassion, there is no sealed deal. When both parties are empathetic of the other, there is understanding. Common ground and communication may commence when both parties identify a shared outcome. If one party is incapable of having empathy for the other party’s condition, negotiation becomes far more complicated.
There is far too much hate, anger, cruelty, pettiness, ignorance, violence, and greed in the world. Most of the world wants the same, or at least similar hopes for their future:
- Provide a safe place to live and maintain a household.
- Access to clean air, fresh water, good nutrition, health, education, and an opportunity to sustain those necessities.
- To provide for one’s family and feed, clothe, and educate them.
Some leaders and celebrities exposed to power find it intoxicating and become engulfed in the overwhelming high that comes with authority. At what cost and sacrifice do we make excuses for anyone in public who condones the torrent of hurt being inflicted on government workers, who are just trying to do their job? Our government is famous for negotiation, compromise, and making policy. A government shutdown is a breakdown in everything that the United States of America is based upon. Our mission has always been to try to be a model for the rest of the planet.
Hurting the poor, the sick, the elderly, and those workers living paycheck to paycheck only weakens our government and divides us even more. Creating controversy and misdirection hurts innocent families, be it democrat or republican, is a petty and a desperate act. I have yet to hear any understanding, compassion, or caring words to ease this humanitarian crisis.
Love thy neighbor got lost somewhere and it is time to locate it quickly.
