Giving Thanks

In honor of Thanksgiving, I want to share 10 things that I am thankful for while living with Parkinson’s Disease.

10.   Getting by on little sleep gives us much more time to spend playing  games on our iPads in the middle of the night, while we are deluding ourselves into thinking that these games may actually help our brain cells regenerate.

9.  We can blame our Obsessive/Compulsive behaviors (see #10) on our medications and the non-Parkies will believe us.

8.  Waking up at 5:00 am doesn’t seem so early anymore.   But why am I always late to my 8:30 yoga class? (See #10.   Still playing those stupid games on my iPad)

7.  I can do things with my left hand now that I would not have been able to do if that damn tremor in my right hand didn’t act up when I am trying to do something like eating, writing, brushing my teeth……you fill in the blanks

6.  Living with PD has taught me to be more pro-active about my health.  I keep up with the latest research and always go to my doctor with a list of questions and concerns.

5.  All of the new friends that I have made who also have PD.  We can laugh and cry together about things that non-Parkies would never understand.

4.   Fortunately I have a slowly progressing form of PD, which is controlled by meds.  Better living through Chemistry is my mantra.

3.  Laughing with PD.  When all else fails, I can always blame stupid things I do on that !?@$#  tremor.

2.  Loving with PD means cherishing the life my husband and I have together and making adjustments as we need to when that @$#% Tremor gets in the way again.

1.  Living with PD has enabled me to reach out to others like you, hopefully making all of our lives just a little bit better

Book Review: Livin’ La Levadopa

Your journey begins now in finding your rainbows behind the storm known as Parkinson’s Disease

Maria De Leon, MD

I met Maria de Leon last month at the Women & Parkinson’s Initiative Conference sponsored by Parkinson’s Diva was recently published and is a must read for every woman with Parkinson’s.

Maria de Leon, MD, was a neurologist treating Parkinson’s patients for more than 20 years when she started experiencing many of the same symptoms as her patients.  Because most of these were non-motor symptoms,  not the traditional PD tremor , she and her husband, also a doctor, thought she was just overworked.  But a consultation with a friend with whom she had gone through residency with confirmed that the problem was in her BRAIN, not her HEAD.  Maria was diagnosed with Young Onset PD, which changed her life forever.

Parkinson’s Diva is a result of much soul searching after her diagnosis and forced retirement from practicing medicine.  Her insightfulness, warmth and humor, along with a good dose of medical information, research and strategies for living with PD, make this book  a must read for all women with PD.  The  book is filled with anecdotes that will leave you laughing out loud, practical advice from treating Parkinson’s patients for so many years, and even some of her favorite recipes.  She is always seeking the rainbows behind the storm, gently nudging you to follow her on this journey to living well with Parkinson’s Disease.

As she states in the very first chapter, women with PD must be pro-active and educate themselves to ensure better quality health care for several reasons. Most importantly, Gender differences in symptoms, research and treatment have not seriously been looked at before.  Most research in the past has focused on men with PD, not women.  Dr. de Leon states that Estrogen may play a large role in how women present their symptoms and how they respond to medication.  Much more research needs to be done in this area to help identify PD earlier in women so that effective treatment can begin sooner.

Dr. de Leon describes herself as a Parkinson’s Diva, which she defines as a lady of distinction and good taste, with some chocolate thrown in for good measure.  She encourages you to “live la levadopa” to the fullest and do not sweat the small stuff.  As women, wives and mothers, our needs often come last, but we must remember to take care of ourselves first.  Put on your favorite red lipstick and show the world that you are still you and you have much more to contribute to the world, even with PD.  Take charge of your life and embrace your inner Diva.

Check out Maria de Leon’s website at http://parkinsonsdiva.org/

Why do I write?

200px-Musée_des_arts_et_métiers_-_Corona_typewriter
200px-Musée_des_arts_et_métiers_-_Corona_typewriter

For those of you under 45, you probably never had to write without a computer.  I always hated the process of writing.  When I was in high school and college, the first thing you would do is outline what you wanted to say.  Then fill it out by writing, ON PAPER, whatever your assignment was.  Once you edited your paper, you would then type it on your manual typewriter.  If you made a mistake, you would have to either correct it by using White-out or start the page over again.  Needless to say, it was a long, tedious process and I hated it.  I briefly considered law school but decided against it because of the writing involved.

Fast forward 25 years.  I became president of my synagogue and then another organization.  Writing a monthly column for the newsletter was part of the job.  But now I had a computer and could write and edit as I went along.  Wow!  This actually became fun.  I no longer avoided writing.

Now I have Parkinson’s Disease.  One of the side effects of either the medications or the disease, can be increased creativity, along with obsessive behaviors.  And that unleashed the need to write.  First I started writing for myself.   Because I also have a need to research whatever ailment I have, (my OCD) I became a resource to others who were newly diagnosed with PD.  As a result, I started receiving calls and emails from people asking me if I would mind talking to their friend or relative who needed information.  That is when I started writing for others.  I actually wrote about this in a previous post called Creativity and Parkinson’s.

That was the reason behind starting the Twitchy Woman blog.  I could satisfy the urge to write and reach out to others at the same time.  It has been a wonderful experience and as a result, I have connected with others across the US and in many other countries who have PD.  We share our stories and information about the latest research and treatments, and hopefully help each other find our way to living well with Parkinson’s.

Take Charge of Your Life

Our challenges don’t define us.  Our actions do.                                                                                     Michael J Fox

For those of you who know me, you may remember that I was diagnosed with PD two weeks after finding out that I had breast cancer.   Obviously January 2009 was not one of my finer moments.   For the next six months I went through life in a fog.  Between the side effects of radiation and increasing doses of Requip for Parkinson’s, I was a wreck.

My wonderful internist, after I broke down in his office, sent me to a therapist who specialized in cancer patients.   Dr. I was just what I needed at the time.   She was kind, thoughtful and compassionate.  Without her, I could not have made it through that first year post diagnoses.  And because of her, I realized that the first neurologist, who said only that I had a Parkinsons like tremor, was not helping the situation.   After another breakdown in his office, my wonderful doc took me off of all meds and then referred me to the Movement Disorders Clinic at UCLA.  Dr. S was a life saver.  Not only did she give me a real diagnosis, but she gave me hope.  Her most important advice was to go on the Internet and start reading about PD.  She also referred me to the website Patients Like Me, which is a website for people with different chronic illnesses.  That was where I discovered others living well with PD and realized that yes, the future for me wasn’t necessarily all doom and gloom

What I learned from all of this is that you have two choices when dealing with PD.   you can suffer iPeanutsLucyDoctorn silence and let life just happen around you or you can TAKE CHARGE OF YOUR LIFE, and find a way to live well with PD.

Taking charge of your life means that you MUST advocate for yourself, or if you cannot do it, find someone who can.  Prepare questions for your doctor before your visit and bring them with you. Don’t be afraid to ask anything you want, even if it feels embarrassing for you.  Your doctor has probably heard it all before and can answer you honestly.  If you are not getting answers or think that your doctor is being dismissive about your questions, then it is time to find another doctor.

Educate yourself about Parkinson’s Disease.  There is a wealth of information on the internet and some terrific websites devoted to PD and or living with chronic illnesses.    The Michael J Fox Foundation and Davis Phinney Foundation are wonderful resources for the latest research and living with PD.

And the number of blogs written by people with Parkinson’s seems to be increasing daily.  Everyone’s experience is different, so check out several blogs to find the ones that you like.

Taking charge of your life also means makinUnknowng sure that your family and friends understand what you can and cannot do.  It is ok to say NO.  Don’t be afraid to say you cannot do something or that you need help.  This is not the time to be a martyr.

Do what you need to do to take care of yourself.  Exercise, find time for relaxation and get enough sleep.  That is the hardest thing for me.  Sleep is elusive for most of us with PD.  Carve out some “me” time every day to relax, meditate or do something just for you.

Finally, follow me on my Facebook page since I will be posting the latest news about PD when I see it somewhere.  There may also be some surprises, too!

Shavasana……….aaaaaaaah

I have been practicing yoga for about 8 years and it has really helped me to maintain my balance and flexibility. While I attend regular yoga classes, there are many classes in the area for people with less mobility, including chair yoga. Check with your local yoga studio to see if they have classes for special needs.  If they do not, they can often help you find the right place for you.  Find the type of yoga class that works best for you and try it for a few months. Start slowly.  We Parkies often try to do more that we are capable of, which can result in falls and injuries.  A few private sessions with a Yoga instructor who has experience working with people with PD or other chronic illnesses can help  you develop  a safe yoga practice that you can follow either at home or in a group class.. And do not skip Shavasana, the final relaxation pose, otherwise known as Corpse Pose.  It is an important part of the meditation practice that we all need to calm our PD symptoms.    Before I started taking meds for my tremors, I would find that during that last relaxation pose, my tremors would just disappear, often lasting long past the end of class.  What a wonderul feeling!

Some days I drag myself to yoga class, thinking that maybe I will stay only a few minutes.  Occasionally I do leave early if I am really having a difficut PD day.  But most of the time, I slog through it, only to find that I feel 150% better by the time class is over. And even on my worst days when my balance is not that great, I see that there are others having the same problems.  And they don’t even have PD!

Try Yoga.  I guarantee that it will make a difference in your life.

The following article from the Michael J Fox Foundation says it better than I can. But I know from experience that it really works.

FoxFeed Blog

Yoga for Parkinson’s: What the Research Says

Posted by  Kaitlyn P. Roland, July 01, 2015

Yoga for Parkinson’s: What the Research Says

Kaitlyn P. Roland completed her PhD research at the University of British Columbia (2012), which measured Parkinson’s disease (PD)-related changes to daily muscle activity and consequences for physical function and frailty. She is currently a postdoctoral fellow at the University of Victoria¹s Centre on Aging and her most recent work examines care needs and well-being in PD dementia caregivers. Kaitlyn offers yoga workshops to persons with PD called “Yogadopa” and blogs about Parkinson’s, aging and yoga-related information at http://yogadopa.com. Overall, she aims to support independent living, and reduce distress and healthcare utilization in persons with PD, dementia and their caregivers.

Yoga continues to rise in popularity and is cited as a favorite non-medical therapy by many living with Parkinson’s disease. Getting started can seem challenging, as it is often portrayed with pretzel-like contortions and trendy #yogaselfies on social media. But, yoga is an adaptable practice, with both functional and psychosocial benefits, that can be suited to a variety of abilities.

Yoga has become synonymous with holding and moving between a series of static postures (called asanas); however, this physical practice (called hatha yoga) is only one part of the larger yoga framework that includes branches such as philosophy, chanting and selfless service. Hatha yoga combines physical postures to address strength, flexibility, balance and mind-body-breath connection. Breathing practices (pranayama) and meditation are included to develop greater self-awareness.

What do we know about yoga for people with Parkinson’s?

In looking through the scientific literature, there are a few studies that support hatha yoga for persons with PD. This is clearly an area of research that is just starting to gain ground. What studies do exist suggest modest benefits for:

Mobility. The issue of mobility has important implications for falls in PD. Yoga participation can improve functional mobility and how a person with PD walks. Standing yoga poses target the hip extensor, knee extensor and ankle plantar flexor, which support center-of-mass during walking and may improve overall stability.

Balance. Balance training is an important component of PD therapy, as 40 percent of nursing home admissions are preceded by a fall. Research shows yoga-related improvements in balance (tandem, one-leg) and an associated reduction in fear of falling; this can also help keep people with PD active in their community.

Strength. Gains in lower-body strength occur for PD patients following yoga practice and are associated with improved postural stability. Yoga requires isometric contraction (i.e., the joint angle and muscle length do not change) of specific muscle groups to stabilize the body as one performs the postures, and may mimic isokinetic contractions (i.e., variable resistance to a movement performed at constant speed) when performing controlled systematic movements from one pose to the next. These mechanisms may be the reason why yoga improves muscular strength.

Flexibility. Improvements in flexibility and range of motion (ROM) are important since rigidity is a common clinical manifestation in PD. Research shows improvements in flexibility/ROM of the shoulder, hip and spine. Stooped posture is characteristic in PD and can be related to short spinal flexors and weak spinal extensors; improved shoulder and spinal flexibility from yoga supports a more upright posture. Greater hip mobility from yoga may translate into improvements in shuffling gait experienced by many living with PD.

Mood & Sleep. The psychosocial benefits associated with yoga are important for disease management, as they are not often addressed with conventional dopaminergic therapy.  Yoga can offer group support, improved confidence and self-efficacy. The calming effect of yoga (by enhancing parasympathetic output) may lessen perceived stress, enhance relaxation, and benefit sleep in PD.