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Archive for the ‘What you CAN do’ Category

Creative Ways to Fight Parkinson’s Disease

Tuesday, January 28th, 2014

Winter's soft lightBettina Chavanne has participated in the Unity Walk since 2007 and we enjoy seeing her photos on her blog. We know that photography brings her much pleasure in spite of some of the challenges associated with taking photos if you are living with Parkinson’s disease, and helps her relieve stress. We asked Bettina to share her experience and her photos. Click here if you’d like to see more of Bettina’s photos.
Helaine Isaacs
PUW Event Director

For many years, I imagined Parkinson’s as a thief, sneaking into my house and taking one more precious item every night. Eventually, I came to see the disease in a less sinister light, more as a sloppy roommate than a cat burglar. You remember the friend in college who would wear your clothes without asking?* The one who “borrowed” your favorite necklace and then “forgot” to give it back? That’s what Parkinson’s does – it borrows all the things I love and messes them up a little bit.

My creativity is my stress-reliever. Which is what made my right-side tremor a bitter pill to swallow. How was I supposed to write? Hold a camera? Play the piano? I realized I just had to wait for my time. I had to wait for those moments when Parkinson’s returned my stuff. Even if only for a moment.

ParisLouvre1Photography has proven to be the creative outlet over which I have the most control. The heavier my camera, the steadier my hand. (That’s also a great excuse to buy really big lenses.) I also developed a not-at-all patented maneuver where I swing my camera over my left shoulder and perch it there to stabilize it. In very wiggly moments, I use a tripod and a remote trigger. Looking at the world with an eye toward capturing it in a single image is a strangely calming pursuit. Taking pictures quiets me, quiets my body and my mind. I still love to sit at the piano and play my heart out, but when my forearm muscles get too tired from fighting the tremor and my notes get all muddy, I can still go take pictures.

Landscapes are my favorite to shoot, although architecture and machinery run a close second. No matter how many times you snap a picture of a particular lake or hill, it won’t ever look the same. I love the mutable quality of our natural surroundings. I love the vast and peaceful emptiness of certain landscapes. Abandoned buildings and machinery (bridges, rusted tractors, airplanes) are just as magical for me – all rusted edges and unusual, imperfect shapes. I get lost when I’m taking pictures, which means I get to forget for a while about how I’m feeling physically.

Manassas Air ShowParkinson’s will continue to borrow parts of me without asking permission, but I will continue to keep the best parts for myself.

For those of you fellow Parkinson’s folks interested in pursuing photography as a hobby, a few words of advice: 1. Make sure all of your lenses are fast (f2.8 or f1.4) and coded IS, for “image stabilizing.” 2. Shooting pictures with your iPhone is an exercise in futility. Unless you manage to master the “image burst” function, which lets you fire off dozens of shots at once.  3. Auto-focus is your friend.

*An important caveat to this blog: My college roommate is a delightful woman and a very close friend. And she never borrowed anything without asking (particularly since she and I had such different taste in clothes that she would never have been caught dead in one of my argyle sweaters).

Bettina Chavanne
Team Captain, Team Bettina

The Simple Secrets that Can Make a Difference “Today” in Your Parkinson’s Disease Care

Monday, April 1st, 2013

Michael Okun's book coverAs 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

Finding your empowerment

Monday, February 11th, 2013

In keeping with our theme of “What You CAN Do”, we are deligthed to feature a blog post from Karl Robb, a blogger, Parkinson’s advocate, writer, inventor, speaker, photographer,  and Reiki master.  His new book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease is available at Amazon.com and BarnesandNoble.com in paperback and eBook formats.
Helaine Isaacs
PUW Event Director

Kar Robb asoftvoice_coverThe diagnosis of Parkinson’s disease (PD) at the age of 23 was both frightening and yet, cathartic. I didn’t know what I had but part of me wondered if it might be a brain tumor.  At such a young age, I was unaware of what PD was, but I knew that I was going to have to learn to live with it. My body was out of control. My feet shuffled, my posture was slouched, and my foot began to tremor for no apparent reason.  I received my diagnosis over 20 years ago, after seeing nearly a dozen doctors. Had I known what I know now, I would have taken charge of my illness even sooner than I did.

Throughout my life, I have observed how PD poses unique issues for each individual that is struck with it. My book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease is a lifelong collection of tips, suggestions, and advice that has served me well. There is no doubt that illness limits our capabilities but it doesn’t mean that we don’t have options. Parkinson’s disease changes your life, but it doesn’t have to destroy it.

There is still so much that you can do. A proactive and investigative search into complementary therapies, stress relief techniques, and an overall health regimen may serve you well. What works for one may not be of benefit to another. Finding the modality that works for you is vital to your health and healing. For me, my life changed at the introduction to Reiki.
Karl Robb
Fourteen years ago, I wasn’t looking for Reiki (a complementary therapy using light touch that reduces stress), but it found me. My friend and longtime teacher had just moved his practice less than a mile from my home in Virginia. Someone totally unrelated to Reiki and in another state gave me my teacher’s name. I was reluctant to investigate Reiki because it sounded so new age and indescribable.

Cautiously and a little reluctantly, I went to see what Reiki was all about. When my now teacher and dear friend explained the benefits of Reiki, it sounded too good to be true.  As unconventional as Reiki sounded, I needed something to boost my energy, reduce my dyskinesia, and help me with my balance. I was willing to give it a try with little to lose.

I skeptically got on the massage table (fully clothed) and 90 minutes after my very first session, I was hooked. My body felt lighter, all my stress had faded away, I felt invigorated, and my walking showed improvement. Since the first treatment, I received numerous Reiki treatments and over 14 years, I have trained and learned to work on myself and others. For me, I know that Reiki has allowed me to do so much more. Reiki has not cured my PD but it has quelled many of the symptoms that plague PD patients.

Finding what works for you can take careful and thorough investigation. Therapies like yoga, acupuncture, massage, cranial sacral, Reiki, and others may help you and have little to no risk. Working with your doctor on the medical side and finding a complementary therapy may very well prove that there is more that you can do for yourself.

Karl Robb