Almost every Parkinson’s disease conference that I have ever attended, over these 30 years of going to symposiums, lectures, and meetings, almost all of them had a an associated tee shirt. Some of my shirts probably got worn out and some may have gotten lost, over time, but here is a smattering of the events that I either had some affiliation with or attended. It’s a tribute to past events and friends-some gone, but not forgotten.
I thought this video might be a good way to commemorate Parkinson’s Awareness Month. Old tee shirts can hold a lot of memories!
Please enjoy this video to see my collection of tee shirts that I picked up from various Parkinson’s gatherings. Just click this link to see the video: https://gopro.com/v/JbDZkdva0MWvg
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.
The 2020 pandemic has robbed us of my favorite living musician, the great John Prine. I have seen John Prine at least a half dozen times, bought most of his albums, and tried to spread the word of his timeless music. I never left a John Prine concert disappointed. Prine wasn’t just an outstanding performer but known as one of the best song writers by his peers.
A former mail carrier and song writer in Chicago, discovered by Roger Ebert and help from Kris Kristofferson, at different times, Prine gained recognition and a recording contract in 1971. Although Prine’s songs didn’t make it to major “pop success”, he had a large following and continued to successfully sell out concert venues and release albums. He had a large and loyal following of fans!
Performer and Songwriter
Songs like It’s A Big Old Goofy World, Paradise, Flag Decal, Sam Stone, Everybody, Dear Abby, Let’s Talk Dirty in Hawaiian, and I Guess They Ought a Name a Drink After You, are but a few of Prine’s tunes that will keep you humming. His music style of folk, country, rockabilly, blues, and jazz is one not to be replicated. We have lost a treasure.
Artists like Johnny Cash, Kacey Musgraves, Bonnie Raitt, and numerous other artists performed John Prine music or paid tribute to his remarkable works. Prine was the first entertainer to play at the Library of Congress and received numerous accolades for his music and for his contribution to the music industry. At last, John Prine was recognized by the industry that his fans had recognized for so long.
I read somewhere, years ago, that John Prine would write a song a day. He had many different sounds as the tastes for music changed through the decades. His smooth smoky vocals (altered over the years from his bouts with cancer, yet he sounded great), his catchy rhymes and phrases, and his melodic guitar chords made for pure genius! If you aren’t familiar with John Prine and you love music, I encourage you to discover John Prine and add him to your playlist, today! This is a huge loss to the world of wonderful music. Celebrate the life and music of John Prine!
If you are complaining about being sequestered at home, be grateful that you have a home and a place to reside through this craziness.
If you are arguing with your family member about who ate the last waffle, be grateful that you have the time to be with them.
If you aren’t terrified from this virus, then you aren’t alive.
If you are bored, then you have nothing to read, have nowhere to walk, made no attempt to expand your artistic acumen, are unable to access television, internet, radio, phone, or paper and pen.
If you have nothing to do while you are sequestered, then you know everything, have the perfect home, can do everything, and have achieved perfection. Congratulations!
If you are unable to just enjoy a few minutes of quiet time, by yourself, maybe you should ask yourself why this is?
If you aren’t grateful for this time with your family, dog, cat, or loved ones, it’s time, right now.
Take advantage of this precious time and savor your life at home!
In just a matter of days, our world has been turned upside down and around by an invisible and deadly invader. Many of us have turned to an online life of Zoom or Facebook Live. Whether it is for schooling, our occupation, support, workouts, weddings, births, or even funerals. Our life, from start to finish, has become a digital experience.
If we were a lonely planet before the COVID-19 virus’s rampage, our sequestering for our health doesn’t help our mental state. Socializing and getting to know our neighbors is improving and uniting us in ways not seen since WWII.
April is Parkinson’s Awareness Month! As COVID-19 continues to impact the world, it frightens me that all of us who have Parkinson’s disease are more at risk to the virus. Many of us have weakened immune systems and are susceptible to respiratory complications.
This Parkinson’s Disease Awareness Month Has Changed
This is a Parkinson’s Disease Awareness Month like no other! As our message of awareness may get muffled in the shadow of the threat of this virus, it’s important to continue to share information. Normally, awareness about Parkinson’s would be focused on informing those unfamiliar with Parkinson’s about:
History of Parkinson’s
Research or Therapies
Rather than offer an awareness about Parkinson’s, we should consider a more timely tact to provide an awareness about protecting ourselves from this dangerous Coronavirus! Please stay strong and maintain your physical and mental health by staying active. So, here are a few sites to keep you informed and up to date:
The Coronavirus and Parkinson’s Disease – Parkinson’s Foundation
COVID-19, Anxiety, and Parkinson’s: Staying Healthy in These Unusual Times – World Parkinson Congress (WPC) blog