Blog Archives
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!
A Partial History in Tees
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
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.
Sequestered Gratitude
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!
Spread Love, Compassion, Care, and Kindness-Not the Virus!
Change to the highest degree is here with rampant speed. It’s a new normal for us all. Social interaction and daily life as we know it will most likely change, forever. Change can be uncomfortable and difficult to accept. Only time will tell what our new normal is going to look like.
Be Careful-Be Smart
As COVID-19 makes its way around the world, it is up to us to remain vigilant as we look after ourselves, our loved ones, our neighbors, and everyone on the planet. It is terribly ironic that a pandemic can confine us to our homes, but highlights just how connected we are to one another. Rich or poor, whatever your race, gender or nationality, we are all in this together.
It is my hope that we choose to share compassion and kindness, in this time of need. This is our opportunity to reunify our nations and the entire planet. Whether you choose to deny climate change or think the Earth is flat, there is no denying this virus and the havoc that it is causing.
Take Precautions
Those of us with Parkinson’s disease may face an even higher risk than the rest of the population, so be extra cautious in your cleanliness, daily care, and exposure. Educate yourself with these important sites, in case you need more information about protection and care:
Virginia Department of Health – COVID-19
Centers for Disease Control (CDC) – Coronavirus (COVID-19)
World Health Organization (WHO) – Coronavirus disease
HOME-BOUND IDEAS
15 Ways to Improve the Lock-down
-
Music feeds my soul and if I miss a day of my music, the day just isn’t complete! Enjoy some type of music that connects with you! Whether the music moves your spirit, your energy, or your mood, play something that moves you.
-
Reality TV is as close as your nearest window. Too often, we overlook the inspiration of nature that surround us. It may be a brilliant sunrise, a running squirrel, or your neighbors’ dog. Appreciate the simple beauty of the day around you.
-
Discover a new talent on YouTube. Whether you want to learn to sharpen your knives or learn to juggle or dance, you’ll find it there.
-
Hone and expand your creativity by drawing, doodling, painting, writing, cooking, or learn a new language or musical instrument.
-
Forgive me. They are called books. They are low-tech but they still have a place.
-
Stay active and force yourself to keep active.
-
For stress reduction, try to meditate and check out the App called, Headspace. This is the one that I use and enjoy!
-
Use your technology to keep connected with family and friends.
-
Build a new daily routine.
-
Take special care of your animals. Don’t forget them!
-
Look after your neighbors.
-
Be kind, compassionate, and patient.
-
Don’t forget how to laugh.
-
I plan to organize my old photos and find a way to use them.
-
Streaming services like Netflix have great content for the whole family.
These are just a few suggestions to inspire moving ahead in this trying time. Be safe and take of yourself and anyone else that you can!
I hope these suggestions are helpful. My intent is to offer some positive thought.
