Category: Alternative Therapy

Odds & Ends

On By skrischerIn Alternative Therapy, Education & Advocacy, Living WellLeave a comment

Lots of things to share this week.

First, about sleep problems.  I found a Yoga Nidra meditation by Jennifer Piercy that I really like.  It is called Yoga Nidra for Sleep and can be found on a website called DoYogaWithMe.  I don’t think I have stayed awake until the end of the meditation yet.  Now I just need my dog to sleep later in the morning so I can sleep in.  Someone else mentioned that they like Jennifer Reis’s Yoga Nidra CD.  I have not checked that one out yet.

Second, Lisa Boyd, whose story I featured last summer, titled Did Trauma During Childbirth Set off her YOPD?, had an article published on the Michael J Fox Foundation website.  You can read it here.

Cheryl Kingston, another member of the women’s group that I run, has also had several articles published on the MJFF website in the last year. They are Moose vs. Mouse,  The Many Masks of Parkinson’s, and  To Tell or Not to Tell: Secrecy and Privacy

This past weekend, the Michael J Fox Foundation hosted the Parkinson’s Policy Forummjf-advocating in Washington, DC.  200 members of the Parkinson’s community from across the US had the opportunity to meet with their congressperson and/or Senators after an intense day of training.  Darcy Blake has written about her experience in her blog post Parkinsons Women Support.   Thank you Darcy for your summary of the  forum.  If you would like someone to speak to a group about advocacy and lobbying for PD, check with MJFF to see who attended from your area.

Finally, I will be working with the Parkinson’s Disease Foundation for the next two years on a program titled  “Women and PD Teams to Advance Learning and Knowledge,” or Women and PD TALK .  PDF received a $250,000 PCORI (Patient-Centered Outcomes Research Institute) award for this program in an effort to address long-standing gender disparities in Parkinson’s research and care.  The press release went out yesterday and you can read it here.

I am very excited to be a part of this project.   Multidisciplinary teams, which include experts in the patient, research, and health care communities, will be charged with identifiying women’s needs and prioritizing solutions. 10 regional forums, designed to educate and collect the insights of women with Parkinson’s, will drive the project. Experts will utilize these insights to develop an action plan to change the landscape of Parkinson’s care.

 

I am looking forward to sharing more with you as we proceed over the next two years with this exciting project.

Make your voice heard. A study for all People with Parkinson’s

On By skrischerIn Alternative Therapy, Living Well, Research & Clinical Studies, World Parkinson Congress 2016Leave a comment

Do not let what you cannot do interfere with what you can do.

John Wooden

One of the most important thing that we, as People with Parkinson’s can do, is to take part in clinical trials.  There are many trials that have very specific criteria for participants.  And often, these trials do not get enough people to participate in order to complete the study because they are so specific.

But there is one trial that anyone who is reading this blog can participate in.  The study is being conducted by Laurie K Mischley, ND, PhD, MPH, at the Bastyr University Research Institute and is titled Complementary & Alternative (CAM) Therapies in Parkinson’s Disease.  You do not need to leave your home.  You do not have to meet with a doctor, take medications or any kind of tests.  All you need is a computer with on-line access, an email address and basic computer literacy.  You do not need to use CAM therapies to participate.

I spoke to Dr. Mischley at the WPC about the study.  The goal of this PD study is to collect as much data as possible over a five-year period with the hope of finding dietary and lifestyle factors associated with a slower disease progression.  The theory behind the study is that of “Positive Deviance”

“Positive Deviance is based on the observation that in every community there are certain individuals or groups (the positive deviants), whose uncommon but successful behaviors or strategies enable them to find better solutions to a problem than their peers. These individuals or groups have access to exactly the same resources and face the same challenges and obstacles as their peers.

The Positive Deviance approach is a strength-based, problem-solving approach for behavior and social change. The approach enables the community to discover existing solutions to complex problems within the community.” *

I have been involved in this study for about 2 years, so it was a pleasure to meet Dr. Mischley to talk about what she is doing.  She told me that so many studies look at what happens before a person is diagnosed with PD.  Her study seeks to look at PwP’s from diagnosis forward to see why some people do better than others.

Every six months I get an email from Dr. Mischley with 2 questionaires to complete.  It does not take more than 90 minutes to complete.  If you are interested in participating or would like more information, go to the website at http://www.CAMCarePD.bastyr.edu.

* www.positivedeviance.org

 

WPC Continued….Beware, this may “make you dopey”

On By skrischerIn Alternative Therapy, Exercise, Living Well, Research & Clinical Studies, World Parkinson Congress 20161 Comment

Thursday afternoon I went to a very informative session on “Speech and Swallowing”.  There are several points that are worth sharing.  First of all, voluntary coughing is a good thing as opposed to a reflexive cough that occurs when you swallow wrong.  If you are having problems with swallowing , you should see a Speech Pathologist who specializes in PD for an evaluation.  There are many non-medical treatments that are available such as postural changes, diet modification and LSVT/LOUD training.  LSVT/LOUD trains you to speak louder and also strengthens the muscles in your throat that are involved in the swallowing reflex.  There are progams available on-line, but the speakers all recommended working with a Speech Pathologist and using the programs for practice.  The other interesting fact is that the Basal Ganglia in your brain gives the feedback to your speech.  In PD it does not function well and the perception is that your voice is louder than it actually is.  So when others complain that they cannot hear you, think about going for a speech eval.  Finally, sing!  Singing can have a positive effect on your speech.

We all know now that exercise is an essential part of any therapy for PD.  “Exercise as Treatment” reinforced the need for exercise of any kind.  Your brain becomes engaged when you exercise.  It switches from automatic functioning to more cognitive, which in turn can create resiliency/plasticity in the brain.  In other words, your brain is adapting and reconnecting, forming new pathways.  The more complex your exercise, the more effective it is.  A combination of more than one type of exercise is optimal.  If you are new to exercise, you need to work with someone who understands PD and can adapt an exercise program that works for you.  The biggest issue with studies for exercise and PD is that most studies only use people with mild or moderate disease.  People with more advanced PD need to be included to see if they can also benefit from exercise.

Finally, the standing room only session on Complementary Care (CAM) did not disappoint.  CAM care is not embraced by many doctors, but is very popular with patients.  And the research is beginning to prove that it does help in many ways.  Although he had no samples for us to try, Dr. Benzi Kluger spoke about the benefits of Cannibis and the different forms that are available.  Some of his slides are below for your enjoyment.  Dr. Indu Subramanian, who happens to be my MDS, talked about Yoga and its benefits for PD, challenging the doctors in the room to encourage their patients to give it a try.   Dr. Laurie Mischley spoke about her studies using Glutathione for PD, something which is definitely not on the radar of many doctors. The results of the few studies are inconclusive.  Some show benefit, others don’t.  Finally, after some technical difficulties, Matt Ford entertained us with music that we can all relate to, using it as therapy.  He began with “Staying Alive” from Saturday Night Fever and then showed a video of a man who could barely move until he put on some music.  You would never know that he had PD.  At the end, everyone was singing and dancing in the aisles.  He left us wanting more!!!

 

PT or not PT?

On By skrischerIn Alternative Therapy, Exercise, Living WellLeave a comment

On Sunday, our Inspired Women with Parkinson’s in Los Angeles group met with Dr. Ali Elder of [re+active] physical therapy and wellness in Los Angeles.  Dr. Elder spoke to us about the benefits of exercise for People with Parkinson’s (PWP) and showed slides of dopamine in the brain before and after exercise.  Exercises can delay the progression of the disease and the release of dopamine in our brains can make us happier.

The bottom line:  Exercise is medicine, don’t forget your daily dose!  Exercise on a regular basis, but make sure that it is something that you enjoy.  The fact that you enjoy it is a result of the increased dopamine in your brain.  And the exercise does not have to be limited to just doing cardio on a bike.  Dancing, hiking, walking, yoga, boxing, tennis and more have been shown to not only increase our dopamine, but also our flexibility, balance and general well being.

So when and why should you see a physical therapist?  According to Dr. Elder, you should be seen immediately after diagnosis.  An assessment will help determine how the PD is affecting your gait, your reflexes, balance and much more.  Exercises can be assigned to address your issues and help to slow to the progression of the disease.  It was recommended to start with one visit to get a baseline of physical function and then the frequency of follow-ups can vary from once per week, once every six month and everything in between.

A physical therapist can also talk to you about taking your medications properly and the effects of food on your medications.  Only a few women in the room had actually gone to a physical therapist.  Most of us did not know that this was an option for us.

Finally, Dr. Elder and her assistant, Jazzy led us through a PWR!Moves workout.   PWR!Moves is a PD-specific skill training program to maintain or restore skills that deteriorate and interfere with everyday movements.  There are 4 basic exercises designed to address symptoms related to Parkinson’s. PWR!Up, PWR!Rock, PWR!Twist and  PWR!Step.  After going through different versions of each of the 4 exercises fairly confidently, we then had to walk across the room throwing a scarf in the air and catching it with the opposite hand.  Chaos ensued.  Just when you think you have figured it out, your balance is affected.  Try it and see what happens.

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Photo courtesy of PWR!