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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:

  1. No two people with Parkinson’s are identical. Every patient is unique and may require a personalized treatment plan.
  2. Often, the first symptoms of Parkinson’s can be a loss of sense of smell, constipation, or wrist or shoulder discomfort.
  3. 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.
  4. 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.
  5. A positive perspective, a good attitude, staying flexible, and a sense of humor can help to deal with stress and anxiety.
  6. 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!
  7. 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.
  8. Dyskinesia (rapid, uncontrolled movement) is not due to Parkinson’s disease itself, but it is a side-effect of the medications.
  9. Protein can reduce the efficacy of some Parkinson’s medications. Consult your doctor for more information.
  10. 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!

A Very Different Parkinson’s Awareness Month!

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

  • Diagnosis

  • Prognosis

  • Parkinson’s Medications

  • 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:

Please don’t take unnecessary risks. Be safe! Be careful! Be Well!

Trying to Process Shock, Loss, and Grief

I didn’t see it coming and the shock that I feel is one full of confusion and sadness. Saturday night, our 11-year-old Chocolate Labrador, Lily, jumped off the couch for her late walk, but her eyes were unclear, her head was unsteady, and her breathing seemed shallow. We think she may have experienced a seizure. When your chronically hungry lab turns down an offering of a treat or a hunk of cheese, your warning sign has been activated. Lily was a canine vacuum, so when she turned down anything close to being edible, there is an emergency pending.

Thinking that you are flexible and easy-going can be dramatically different until, you are challenged.  Life has a way of sneaking in unexpected setbacks that knock your feet out from under you.  We recently experienced the challenge after picking up the flu, following almost a month-long trek through the southeast. This strain of the flu knocked us on our butts, hard. It lasted far longer than we had expected. Our loyal lab, Lily, helped us mend and kept us company, the whole time. She was our nurse and companion through the coughing fits. She wanted to make everything okay. She was selfless!

Angela and I were in crisis mode. We rushed Lily to the 24-hour emergency veterinary clinic. It was early on Sunday morning. Tired and scared is a bad combination, especially when you are worried about the fate of someone you love.

Lily was an exceptional dog, with great intelligence, and a stubbornness for chewing sticks and sometimes eating them. We just assumed that a stick had lodged somewhere, causing her discomfort or a blockage of some kind. Other than this new development, Lily had shown excellent health and vigor for a dog of her age. She looked spry and active and never missed a meal or a treat.

Motivation

 

Lily was a sensitive and caring dog. At first encounter when you met Lily you would see her lip raise and her teeth would come out—some saw a snarl, but if you knew her and her nature, you saw her smile. She greeted everyone with her welcoming smile. Her smile brought so much joy to so many, especially us.

It was close to midnight on Sunday morning at the emergency vet, when Lily tried to smile at her doctor but was only able to make a partial lip raise. She really tried. Her tail wagged and she searched for a greeting, but the energy just wasn’t there.

Our emergency vet was a young man in his early thirties. He was a very gentle and accommodating doctor who bonded immediately with the ailing Lily and her anxious parents. We explained our situation to the doctor. He told us he would scan Lily to check her insides for any possible cause for her discomfort.

Ten minutes after he had left the room, he returned with devastating news that she was bleeding in her heart due to a cancerous tumor. Her options were not fair to her and we were left with no choice but to give her a peaceful sendoff. We would not be taking her home again. It happened so fast and at around 1:00 AM in the morning.

 Trying to comprehend the situation and the sheer rapid pace of information and decisions that were being flung our way took all our concentration and strength. Our energy was drained, and our emotions were overwhelmed. We were not prepared for what the universe was doing to Lily and us and the speed with which it was happening. Lily was gone by 4:15 AM. All that I can say is it was a peaceful death. She didn’t suffer.

Dealing with the death of those who are close to us doesn’t get any easier with age. We are still in shock. The pain may dissipate over time, but it will never go away entirely. There are at least half a dozen places in the world that I don’t want to go– one of the top places is the emergency vet in the very early morning /late night hours, or at all.

We are so grateful for the emergency vets’ efficiency, compassion, patience, and kindness. He made a very tough situation much easier when it could have been even more difficult. As hard as losing Lily has been, we see a positive in the wonderful care that she received and the tenderness that we all were shown. There was no way to prepare for this shocking experience but together we will support each other to get through this difficult time.

We miss her so much!

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