As we all prepare for the Unity Walk and for other walks and races that will raise money and awareness for Parkinson’s disease across the globe, it is important that we keep in mind the simple tips and secrets that can improve the lives of sufferers. One secret that is kept a little bit too tightly by Parkinson’s disease experts, is that the Parkinson medication interval (timing) is as important as the dose. Here are some practical tips that can improve the number of hours of good quality functioning in each day for a Parkinson’s patient:

• If the medication is wearing off before the next dose, consider moving dosages closer together.
• It is not uncommon for some Parkinson’s disease patients to require medications even as close as every 2-3 hours.
• If you experience dyskinesia (extra movements usually an hour or more after a medication dose) you may need to decrease the dose, and move the medication intervals closer together.
• Medication timing usually changes as Parkinson’s disease progresses.
• Remember in Parkinson’s disease timing is everything!
• Sometimes before a big race or athletic event Parkinson’s patients will take an extra dose of medication.

I write several blogs for Parkinson’s disease patients to learn and exchange the secrets that can help them to live a happier life -  Parkinson’s Treatment: 10 Secrets Blog  and National Parkinson Foundation What’s Hot in PD Monthly column.

The most humbling experience of my life has been the time I have spent with families, and with patients suffering from Parkinson’s and chronic neurological diseases. I use the word humbling, because time after time, in person, and also on the web forum, we have uncovered simple and addressable issues and secrets that have changed people’s lives. For some sufferers it has meant walking again, for others it has restored their voices, and for many it has resulted in the lifting of a depression, anxiety and desperation cloud that has obscured their dreams, and robbed them of potential unrealized happiness. I never assume a sufferer or family member is aware of the “secrets” that may lead to hope and to a happier life. We must share these secrets, and this is the purpose of this website.

My newest book, Parkinson’s Treatment: 10 Secrets to a Happier Life was published on April 1, 2013 for Parkinson’s Awareness month. We will provide translations of the book and its secrets into over 20 languages, so that we can help people from all worldwide cultures and languages. In each chapter of this new book I will reveal an important secret, and will explain the insight, the rationale, the empiricism, and the science behind it. Additionally, in each chapter I will try to reveal a little more about myself, and a lot more about the patients and talented clinicians who gifted the secrets.

These patients planted the seed of faith. They learned to grow hope, and they discovered the core values necessary to achieve happiness despite chronic disease.

For more information, click on Amazon or Smashwords.

Michael S. Okun, M.D.
National Medical Director, National Parkinson Foundation

Guess which show we are raising awareness … in tomorrow!?!

Set your DVRs to record The Doctors show on Monday, March 18th.
This date is based on if all goes as scheduled; we urge you to please always check your local listings and episode guides.

Sneak peak into topics that will be discussed:  DBS/Deep Brain Stimulation for Parkinson’s.  CLR01.  May May Ali will be on to raise awareness about Parkinson’s and #puw2013!

Together with a panel, May May Ali talks about many topics surrounding Parkinson’s on HuffPost Live

One more thing you can do … turn the lights on!

May May Ali and I just returned from a two day media tour in New York City. Our goal was to raise awareness about Parkinson’s disease and the Unity Walk NOW– with plenty of time for walkers to register and raise funds for research, and to reach people who don’t yet know about us. It was energizing and the pace was frenetic! We had a whirlwind schedule, meeting with reporters from FOX 5 Good Day New York, CBS WLNY The Couch, HuffPost Live, FOX News Radio, Better Show, CNN, multiple Sirius XM radio shows, and more. We had incredible opportunities to share our story!

It was a really great few days because we were able to raise awareness for our entire community and because the media was receptive to our passion and cause. They were touched by May May’s recollections about her father, Muhammad Ali, and inspired by her energy to encourage others to take action. May May compared being in the dark about the disease to walking through your house with the lights off. She encouraged all those living with Parkinson’s and their families to “turn on the lights” by educating themselves at the Walk.

When asked what her number one message was, she replied that it ” … would be to please educate yourself on Parkinson’s disease … Try not to be afraid. Don’t isolate yourself, and learn because with wisdom there’s power and empowerment. You will improve the quality of your life … Would you rather walk through your house in the dark trying to look for everything? Or do you want to turn the lights on? … Just get involve and be proactive and get active in the disease and don’t let it overtake you.”  -A Few Moments with May May Ali on FOX News Radio

To those who have not yet heard about our annual gathering in Central Park, our message was definitely clear– the Unity Walk is one thing you can do to take action. It empowers the Parkinson’s community by providing educational information and resources about the disease; creates inspiration by bringing the Parkinson’s community together; and 100% of donations go to much needed research.

We’ve already been invited back to a number of these news shows and several reporters have promised to personally support the Walk. (Especially when they heard it was only a 1.4 miles!) These new contacts have an extensive reach and will continue to help us spread the word about the Walk, raising more funds for research. Our hope is that we are able to reach so many others that will turn the lights on. The more people who join us in the fight against Parkinson’s disease, the closer we will get to our goal of finding the cause and cure for PD.

We had many favorite moments during our media tour, and just wanted to share with you one of them, which is this 25′ HuffPost interview. While we do start off by talking about the Walk, the rest is really informative on various Parkinson’s topics. Please do check it out as it is a great dialogue on many issues that surround Parkinson’s disease. Talked about caregivers, DBS, movement disorder specialists, and the hosts even mentions scurvy and WebMD? Don’t miss this one … and please remember to keep your lights on!

(There are still a handful of interviews that we’re still trying to get a hold of and another set that will be aired at a later date, here’s how you can stay tuned! We’ll update links on this post as we receive them.)

Update: Photos from the day are up.

Carol Walton
Executive Director, Parkinson’s Unity Walk and CEO, The Parkinson Alliance

The Parkinson Alliance Announces Results from 13th Survey on Speech; Recruiting Participants to Complete Newest Survey on Falls

All about how we started doing studies using patient surveys
Parkinson’s disease (PD) patients have a continuing challenge to improve their Quality of Life and therefore reach out to various sources to help them make the choice about their next step:  more pills, different combination of pills, time interval changes, more rest, etc.  For some, the next step may be a surgical therapy:  Deep Brain Stimulation (DBS).  Traditionally, the two most common surgical sites are the subthalamic nucleus (STN) and the globus pallidus interna (GPi).

In December of 2000, Margaret Tuchman, President of The Parkinson Alliance, had very successful bi-lateral DBS-STN surgery in New York City.  As a result of her surgery, she was feeling better than she had in 10 years, and decided to “give back” to the PD community.  At that time there was no collective repository of information about types of surgery, selection criteria of the patients, or any organized statistical information etc.

The first step was to develop a website:  www.dbs-stn.org and then we started doing patient surveys.  One of the important goals that we set for ourselves was to provide a tool to find a common language among the physicians, carer, and People with Parkinson’s (PWPs).  Our surveys help define meaning, adding language to the feelings and perceptions of the patients thereby helping to facilitate understanding between the patient and doctor, patient and carer, and carer and doctor.

To date, we have expanded our research endeavors to:

• Obtain a better understanding about the experience and well-being of individuals with PD who have received DBS.
• Compare individuals with and without DBS in the context of both motor and non-motor symptoms related to PD.
• We use standardized scales and statistical methods to obtain sound results.
• As of 2012, we have conducted 14 surveys on topics such as quality of life, depression and anxiety, sleep disturbance, balance, and pain— just to name a few.

We’ve just released our latest report on our Speech survey
Changes in speech and communication for individuals with PD are common.  The causes and characteristics of speech disturbance in individuals with PD are complex and variable, but there are general patterns of speech changes in PD that are related to and coordinated by an integrated network of sensory, muscular, respiratory, and thinking functions.  The Parkinson Alliance has completed our 13th survey, which focuses on this very issue.  Entitled “Speech in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation” we had 758 participants including both groups— those with DBS— and those without.  86% of the participants of this study endorsed speech problems.  Our study compared speech symptoms for DBS and Non-DBS participants as it relates to disease duration and age groups.

Survey results include the following DBS Highlights:

Our Speech report, as well as all prior reports is available on our website.  We are currently working on our Resilience report – please stay tuned for that!  

What you can do
And we are looking for participants for our 15^th survey on “Falls in Parkinson’s Disease:  Increasing our Understanding about Falls and Related Risk Factors.”  There is no charge— all you have to do is provide your mailing address so we can mail you a copy, mail it back, and we even pay for the return envelope.  All information is confidential and we are available to assist in any way and answer questions.  Here’s how you can contact us to sign up to receive our latest surveys.

Why your participation is so important
View video

We hope you find this information to be very helpful in increasing your quality of life.

You may also be interested in learning about the results from …
In April of 2009, The Parkinson Alliance (primary sponsor) convened a panel of world’s experts on DBS for PD.  These world leaders discussed current matters related to DBS therapy and where we need to go with this intervention.  The ultimate focus was on improving the effectiveness of the intervention and quality of life of those individuals who have undergone or those who will choose to undergo DBS.  The final report entitled “Deep brain stimulation for Parkinson disease: an expert consensus and review of key issues” has been published and can be accessed on our website.

Carol Walton
Chief Executive Officer
The Parkinson Alliance

I had been seeing the same movement disorder specialist since I was diagnosed with Parkinson’s disease in 2007. I approached Carol Walton, CEO of The Parkinson Alliance and Executive Director of the Unity Walk, when I was ready to explore other options available to me in the Washington, DC area. I just turned 40, and I felt like my doctor focused too much on treating me with medication and not enough time looking at my treatment holistically. Carol referred me to a new movement disorder specialist that she described as “no nonsense,” which was perfect for me. I work an exhausting schedule in public relations for a defense contractor, I travel a lot, I’m a stepmother to two beautiful girls, and my hobbies take up the rest of the hours in the day that I’m not sleeping – and I don’t sleep much. So, I was ready for someone to approach my treatment more proactively. Carol’s assessment was spot-on, and I love my new movement disorder doctor.

In our first meeting, she changed the timing of my meds. Not the dose, just the timing. At first, I was concerned about whether I’d be able to stick to the strict schedule. I didn’t think about it long. Within a week, I started sleeping better and my energy came back – enough energy to take on an endurance challenge at my gym. I had read about the benefits of working out, and I’d been a member of the gym for a while. But I finally had the strength to really push myself. And I did. Very, very hard. The results, as you can see in the VIDEO, were stunning – and that’s only six weeks into the program. Today, I’m more fit, stronger, and have more energy than I ever did before.

My goal is to spread the message that you can have a life – a vibrant, healthy life – while you balance the demands Parkinson’s places on your body. Working out, endurance training, pushing yourself to the limits … it’s all about reclaiming what Parkinson’s begins to take away, piece by piece. I won’t always be in this shape, I know that. But as long as I can hold on to the quality of life I’ve been able to achieve today, I’m going to fight for it every step of the way.

Bettina Chavanne Team Captain, Team Bettina

12/17/2012 Update:  Please check follow-up post on Team Bettina’s Blog.
_
For more information:
Join the conversation about this topic on Facebook.
View Team Bettina’s website.