PSCNN Past Webinars

New Treatment Options For Parkinson's Disease
Presenting Dr. Nicki Niemann MDS
03/25/2022 

Webinars & Podcasts

 

American Parkinson's Disease Association (APDA)

View the “Spotlight” webinar series to learn ways to achieve a sense of well-being while living with PD and how all members of the family can find support, hope and optimism along the PD journey.

https://www.apdaparkinson.org/webinar/

The Michael J. Fox Foundation

On the third Thursday of every month at 12 p.m. ET, join free live webinars to learn about various aspects of living with Parkinson's disease and work being done to speed medical breakthroughs. Log on, listen to the expert discussion and submit your own questions to the panelists.  https://www.michaeljfox.org/webinars

 

Davis Phinney Foundation

Each month, we host live webinars that cover topics critical to helping people live well with Parkinson’s. In addition to these live webinars, we have an extensive library of recordings that you can watch at your convenience.  https://davisphinneyfoundation.org/webinars/

Boston Scientific Webinars on DBS

https://dbsandme.com/Webinar/

Parkinson's Association of San Diego Micro-casts

https://parkinsonsassociation.org/pasd-microcasts/

PD Community Articles and Thoughts

 

 

Parkinson’s Awareness

By Joe Carmona - 04/2022

 

My story, like many others who have Parkinson’s, is not unique. I have been diagnosed with PD since

October of 2009, over 12 years, and am still shaking. But I hope to raise awareness of the disease for

you to have a better understanding of PD.

 

The month of April was designated as Parkinson’s Awareness Month by the U.S. Senate on

March 29, 2012 with the resolution; we honor those with Parkinson’s Disease (PD) and raise awareness

of the disease.

Like anything else, once we shine the light and investigate a subject, we become more informed and

have a different point of view. Nelson Mandela said “And as we let our own light shine, we

unconsciously give other people permission to do the same. As we are liberated from our own fear,

our presence automatically liberates others.” 

 

With that being said, I would like to shine the light on my disease and give you a few facts about PD.

 

  • Parkinson’s is a degenerative neurological disease characterized by involuntary movement

         and/or a lack of movement. 

  • Primary motor symptoms of Parkinson’s are: tremor’s, balance, stiffness, and slowness of movement.

 

  • 1.5 million Americans live or have lived with PD, such as Neil Diamond, Michael J Fox, Billy Graham,

        Jesse Jackson, Linda Ronstadt, Robin Williams, Mohammad Ali, President George W. Bush,

          Alan Alda, and Pope John Paul II.

  • The disease was named after a British Scientist named James Parkinson in 1812. 

 

  • Economic burden of PD is at least 14.4 billion dollars a year and will double by 2040 in the US alone. 

 

  • There is no cure, however high cardio-exercise helps to slow the progression.


 

Looking back, prior to being diagnosed, I had stiffness and loss of elasticity on my joints. I also noticed

a small tremor on my index finger. My doctor prescribed some type of muscle relaxer. My daughter,

who is a therapist, looked at my symptoms and told me to get an MRI, because she suspected it was Parkinson’s Disease. Although MRI’s cannot detect PD, she sent me down the right path.


 

I was diagnosed with Parkinson’s and I remember having many questions about PD. The effects it

would have on me, my family, and the future were just a few of the questions. Then I had more.

Why me? How did this happen? And what will happen next? 

 

I tried to hide symptoms (tremors) from other people because I was embarrassed of what I had.

During this time, I made some hasty decisions; like giving up my teaching position and officiating

high school sports, which was part of my life for 30 years. I felt no one understood my disease and

no one could answer questions for me.

 

Finally, thank God, I came to deal with what I had and accepted the disease for what it was. I read

materials on Parkinson’s and talked with other Parky (PD) friends to better understand my symptoms.

I can now look into the eyes of that person in the mirror and accept myself.

 

Parkinson’s is a life changing disease and is a huge challenge, not only to the victims, but also to the

family. It is hard to live with a disease which has no cure. I see Parkinson’s as a silent disease because

there are many symptoms that are not visible, like depression, anxiety, loss of smell, sleep disturbances, hallucinations, loss of concentration, loss of confidence, fatigue and pain.

 

With this disability, I need to focus on what I can do, not on what I used to do. I need to stay active,

not only physically, but also mentally.

 

Parkinson’s has made me a different person but there is a reason for everything that happens to us.

One of these days I will understand why I was chosen to have the disease. 

I look back in time and I wonder where am I with this disease and what the future will be. There is an

old saying “We cannot do anything about the past, and we cannot predict the future, but we can

certainly do something about the present.” 

 

The present is today, so what are we going to do today about our life? We (people with Parkinson’s)

will continue to fight this disease and make the public aware of PD.

 

I encourage other victims, like myself, to reach out to the public and educate them on the disease

that chose us. Once we communicate our disease with the public, they will have a better understanding

of our symptoms and images we project. 

Joe Carmona Newsletter and webiste photo.jpg

In the News

 

PSCNN on KOLO

PSCNN Chair, Mindy Lokshin, was a guest on KOLO, Rebecca Kitchen's, Morning Show. This was a great piece on Parkinson's in Northern Nevada! Way to go Mindy!

https://www.facebook.com/KoloRebeccaKitchen/videos/1326982991131750

Smartphones Track Motor Function in Parkinson's Disease

Researchers are using smartphones to collect and analyze data on motor symptoms and mobility of patients with early Parkinson's disease (PD).The technology reflects how well patients with PD are functioning and might eventually be used in clinical trials to determine whether therapeutic interventions are working, Michael Lindemann, PhD, Roche Pharma Research and Early Development, Basel, Switzerland, told Medscape Medical News. https://www.medscape.com/viewarticle/881295

Inhaled Levodopa Improves Motor Symptoms in Parkinson's

A new inhaled formulation of levodopa effectively addresses "off" periods in patients with Parkinson's disease (PD), results of a phase 3 study have shown.The study demonstrated significantly greater improvement in Unified Parkinson's Disease Rating Scale (UPDRS) motor scores for patients using this new agent (CVT-301) compared with those using a placebo. https://www.medscape.com/viewarticle/881357

Patient Voices: Parkinson's Disease

Parkinson’s disease, which affects more than 10 million people worldwide, is a neurological disorder that occurs as a result of the death of nerve cells in the brain that produce dopamine. The loss of dopamine production in the brain can lead to tremors, balance problems, stiff facial expressions and muffled speech, among other things. How does Parkinson’s disease affect the body? The mind? How does having a progressive disease affect families? Listen to the stories of seven men and women with Parkinson’s disease. https://www.nytimes.com/interactive/2017/06/06/well/patient-voices-parkinsons.html?_r=0 

In Other News

April is Parkinson's Disease Awareness Month

On April 1st, 2022 Governor Sisolak proclaimed April to be Parkinson's Disease Awareness Month in the state of Nevada. PSCNN, was at the heart of this, making this possible for all Nevadans to hlep learn and understand the disease. 

Parkinson's Day at the Reno Aces

PSCNN wanted to celebrate April Parkinson's Disease Awareness Month in fashion and joined the Reno Aces for a day! Sunday April 24th was a perfectly beautiful day for some hotdogs and baseball!  

 

 

 

Newsletters to Join

Parkinson's Disease.net - https://parkinsonsdisease.net/

Parkinson's News Today - https://parkinsonsnewstoday.com/

Caregiver.org - https://caregiver.org/

PMD Alliance - https://confirmsubscription.com/h/t/CDD2062BE5A2D491

Michael J Fox Foundation - To subscribe or to the print issue, email info@michaeljfox.org

Parkinson Foundation - http://Parkinson.org (Scroll to bottom to join)

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LEGAL DISCLAIMER:

The  Parkinson Support Center believes that decisions about medical care must occur between a patient and a trusted medical professional. The information presented on this website is not intended to replace or interfere with the course of your medical care. It is intended only to assist you in your understanding of Parkinson’s disease.

 

No information contained on this website is offered or intended as medical advice.

 

We cannot endorse any treatments described on sites that we link to. We recommend that treatment decisions are based on personal treatment goals with a trusted clinician with experience in the care of Parkinson’s disease, or a physician who can work in conjunction with a PD specialist.