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Archive for the ‘Education’ Category

Another simple thing you can do: participate in a research survey

Wednesday, January 9th, 2013

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
Capture5Changes 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:

Capture

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

What you can do
Capture2And we are looking for participants for our 15th 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

A new regimen of endurance training, a new movement disorder specialist, and tweaking the timing of medication makes a world of difference

Friday, November 30th, 2012

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.
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