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Hear It, Share It (Part 1 of 4): Timing in Parkinson’s Disease May be Everything

During these uncertain times, now seemed the right time to share with you some words that might be of help. As we all are at home during this outbreak, I know I’m thinking about and discovering how to get back to a routine that I can keep. It isn’t easy with constant distractions. The refrigerator constantly trying to lure me, the phone ringing with robocalls, trying to work, and timing my medications – all at once – they all pull at me!

Listen to the Audio Series

So, for the next four weeks, I will be sharing a chapter from my audio book, A Soft Voice in a Noisy World – A Guide to Dealing and Healing with Parkinson’s Disease that I think might be helpful. This week’s chapter is about dealing with timing in Parkinson’s.

Timing is Important

Timing your medicine, your diet, your exercise, your sleep, and your work are a challenge that takes some self-discovery. Click the play button below to hear voice actor/narrator, Doug Gochman read Chapter 15 of my book, to get some ideas on timing:

Chapter 15: Timing in Parkinson’s Disease May be Everything

Keeping up on a simple daily regimen can feel like a full-time job in itself, and the longer you have this illness the more you’ll recognize the importance of being diligent in monitoring how you’re body is reacting to your medicines.

Karl Robb, A Soft Voice in a Noisy World

Please feel free to comment about this chapter and share your own tips on how you manage your daily timing by clicking the Leave a Comment button below. Share this post with others by clicking the share buttons on the right.

Next Week’s Chapter Hint…

The next chapter in this series deals with the dilemma of weighing the fairness of living with a chronic condition. Come back next Thursday to hear the next installment!

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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:

  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.

Losing An American Treasure—The Loss of John Prine

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!

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