Finding your Parkinson’s Community 

Today, two different people contacted me who were diagnosed with Parkinson’s in the last few weeks.  They are both shell-shocked by their diagnosis.   One of them said she is about 20% Parkinson’s and 80% fear at this point.  We have all been there.  Most people tend to retreat after their diagnosis. They don’t know where to turn; they do their best to hide the disease from others and from themselves.  Those with hand tremors try to hide their tremors by putting the hand in a pocket or holding it with their other hand.  As one Parkie friend says, they are doing “the hand thing” to convince everyone that they are ok.  

So what’s a Parkie to do?  One thing both of these women said was a priority was finding a way to get past the fear.   Finding a welcoming Parkinsons community is an important key to moving on and learning to cope with the disease.  This probably holds true for any chronic disease.  

 Right now I am about 20% Parkinson’s and 80% fear.  —  Dianne (diagnosed 2 weeks ago)

Last year  a woman was referred to me by a mutual friend. Before then, she had never even met another person with PD and she was afraid to come to the first meeting of a newly formed “women with PD” group we were starting.   We met privately after the meeting and she was surprised to see that none of us fit her own PD image bent over and shuffling old people.   We were all active and “normal” despite our various issues and limitations.   Encouraged,  she came to our next meeting and is now one of the most dedicated members.   And she learned an important lesson:   Stereotypes don’t apply to Parkinson’s.   Besides, most of us are really nice people to be with.

So how do you find your Parkinsons community?  Start by finding someone else with PD to talk to.   It really helps.  While your spouse, significant other or best friend may be there for you, they don’t — they can’t — really understand how you feel.   You need to find someone who is living well with PD who can be an inspiration to you.   If you can’t find anyone, ask your doctor to put you in touch with another patient who is open to talking to you.

Go online.  There are a lot of Parkinson’s blogs out there with many different points of view. Find the ones that “speak to you” and follow them.  Don’t be afraid to ask questions.   Most bloggers welcome the opportunity to interact with their readers.   Just beware of those that promise you the moon.   As of today, there is NO cure, but scientists seem to be getting closer so don’t’ give up hope.  There are also PD communities online where you can participate in chat rooms and conversations with people from all over the world. 

The best thing to do is to join a support group or attend exercise classes that are specifically for PwP’s.  There are dancing classes, boxing for PD programs, yoga, and much more.    Once you start going to the classes, you will find that the camaraderie in class is as beneficial to you as the exercise you are getting.    If there are no classes in your area, find someone qualified to lead a class for PwPs and start one.  You will be helping others and creating your own community at the same time. 

Some of my best friends have Parkinson’s.   We found each other through our PD community.   And best of all, when we are together, no one has to hide their symptoms and we have the freedom to just be ourselves.    

Inspired by Colleen

Our support group, Inspired Women with Parkinson’s in Los Angeles, met last Sunday with yoga therapist extraordinaire, Colleen Carroll.

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Colleen Carroll and Jen Heath

We began the meeting with each person naming one challenge she has because of Parkinson’s.  The two most common challenges were deteriorating handwriting and sleep issues.  It seemed that handwriting was much more important than lack of sleep to almost everyone.  What are some of the challenges facing you as a Person with Parkinson’s?  Take the poll below.

According to Colleen, yoga as therapy is a new phenomenon, beginning abut 30 years ago with Mr. TKV Desikachar.  To illustrate that the breath is the fundamental element in yoga, Colleen quotes Mr. Desikachar: “If you can breathe, you can do yoga.”   It is the art of synchronizing breath and movement.  When the nervous system starts to get unified, balanced and brought together, we start to behave, breathe and move in a harmonious way.  Beginning with the breath, the goal of yoga is to calm the activity of the mind.  This mental focus gives you the ability to command the pace of your thoughts and the quality of your thinking and to direct the mind in a single-pointed way.   What happens over time is that we replace the multi-level activities in the brain with a calmer sequence of thoughts.

Colleen has a new DVD coming out in the next few weeks called NeuroTherapeutic Yoga,  specifically for people with Parkinson’s and other neurological disorders. There are three breath-based sequences; a floor sequence that can be done on the bed if you cannot get on the floor, a standing sequence using the chair if needed, and a chair sequence.   All can be modified to fit your needs.  You can play all the way through it or choose just one section.

After Colleen’s introduction to yoga therapy, we took our chairs and yoga mats and spent a wonderful hour practicing yoga.  We ended with viparita karanii (legs on a chair), listening to Colleen’s soothing voice leading us through a meditation.  Everyone left refreshed and much calmer.  Thank you Colleen.

 

 

Practice Your Downward Dog

Inspired Women with Parkinson’s in Los Angeles
Invites you to

Yoga for Women with Parkinson’s

with special guest

Colleen Carroll

Yoga Therapist • Health Educator, Kaiser Permanent

Sunday, August 14 at 10:30 am

Westside Pavilion

Community Room A

10800 West Pico Boulevard, Los Angeles
No yoga experience necessary

Dress comfortably and bring a yoga mat or a beach towel
RSVP to Twitchywoman18@gmail.com by August 10

 

A Good Resource for all things Parkinson’s

You can’t control the wind, but you can adjust your sails.

Yiddish proverb

I just saw this post on Parkinson’s Women Support about a site called Parkinson’s Patients Support Groups.  Although it is based in the Bay Area, there is a lot of good information about Parkinson’s organizations, the latest news on PD and clinical trials.  A similar sight with resources in the LA area is The NeuroCommunity Foundation  which has support groups and other services in the Valley and points north.

In addition, I was informed this morning that I have been featured in a testimonial on the Parkinson’s Disease Foundation website.  One of the goals of the Women & Parkinson’s Initiative conference that I attended is that participants will reach out to other women with Parkinson’s.  I will be planning an event in the spring for Women with PD living in in Los Angeles along with Jennifer Parkinson, who also attended the conference.  If you are a woman with Parkinson’s or know a woman with PD living in Los Angeles or the Valley, please contact me at twitchywoman18@gmail.com to be put on our email list.  You will not want to miss this exciting event.  More info to come.

Finally, a note from Parkinson’s Action Network.  Take the FDA Survey on Parkinson’s by Oct. 30
There’s still time to join more than 2,400 people with Parkinson’s and their caregivers who have taken the community-wide survey on Parkinson’s disease. Learn more about the survey here.