My Non-support Support Group

 

Three years ago, I had the privilege to attend the Parkinson’s Foundation’s Women & PD Initiative.  At the end of the conference, we were asked to reach out to other women with PD in our communities.  Some of the women chose to hold a conference in their city for women with Parkinson’s.  Others formed support groups or other activities for women with PD.

From the beginning, the women who came said that they did not want this to become a monthly “gripe” session.

I decided to reach out to other women to get together on a regular basis for what eventually became what we lovingly call a “non-support support group”.   Instead of a traditional support group format, where there is an occasional speaker, but more often a facilitator led discussion, we have no format.  From the beginning, the women who came said that they did not want this to become a monthly “gripe” session.  They wanted to get to know other women with PD in a non-threatening environment.

We often have a speaker or activities to help us live better with Parkinson’s.  So we have had sessions where we boxed, we danced, did yoga, made art and drummed.  We have had a sex therapist speak to us.  A PD psychologist, a speech therapist and more.  Sometimes, we invite spouses or the men from my boxing group, depending on the topic of the day.   When American Ninja Warrior, Jimmy Choi, came to Los Angeles, we had him join us for an interview about his journey with PD, followed by an obstacle course and a potluck BBQ.

This past week, we had a holiday celebration, with both women and men, with a private docent led tour of  The Notorious RBG:  The Life and Times of Ruth Bader Ginsberg exhibit at the Skirball Cultural Center, followed by a tea.  When I tried to facilitate a short discussion at the tea, no one was interested.  After all, that is for support groups.  They were just happy to do something stimulating and informative and get together with friends.

The bottom line is that sometimes, we just like to get together and have fun or learn something new.  Many of us know each other through this group or from other activities in the PD community of LA.  So when we do meet, it is more often because of a special opportunity that has come to us that is different than what most support groups or PD conferences can offer.  And of course, there is always food.  We don’t meet as often as we did at first because, well, we are just busy women with full lives.

But something magical has happened.  Many of us have formed close friendships with others in the PD community.    Because LA is so spread out, women have come from places an hour or more away just to see the friends that they have made through this group.  Women who understand what they are feeling without even talking about it.  Women who were newly diagnosed and afraid to meet others with PD have joined us and discovered that there is a welcoming community for them that is there to help them on their own personal journey with Parkinson’s.  Most importantly, they have gained confidence from seeing that their diagnosis is an opportunity for them to do new things, not an end.  Many have discovered ways that they can live better with PD.   And others have created their own ways to reach out to others in the PD community.

Because of this group, I spent a lot of time at the World Parkinson Congress in Portland with two of the women who eventually created Soaring with Hope for PD.  We have all become very close friends.  Although I do not live close to them, we try to get together regularly for lunch or at other local PD events.  They reached out to me to help spread the word about Soaring with Hope from the beginning, and I am thrilled that this has become a global project that will be one of the highlights of the upcoming WPC in Kyoto.

So I want to thank all of you who have joined me on this fun ride for the past three years.  We will continue to get together to learn, to share and just have fun.  We may not meet as often, but when we do, I can guarantee that it will be time well spent.

Happy Holidays to all of you!

How Are Women with Parkinson’s Different than Men?

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The new image of Parkinson’s DIsease

What image comes to mind when you hear someone has Parkinson’s Disease?  I am sure it is not what you would have seen in Houston at the Women and PD TALK National Forum last week.

In a little over 2 years from concept to fruition, the Parkinson’s Foundation’s Women and PD TALK initiative held 10 regional Forums in the past year, and a final National Forum in Houston last week. Three years ago, at the Parkinsons Disease Foundation’s (now Parkinsons Foundation) Women & PD Initiative conference that I was privileged to attend, one of the key take-aways was that there are disparities in research and care between women and men with PD.  To date, there had not been any studies to look seriously at these disparities and we wanted to know what could be done to improve the care and treatment of women with PD.   A year later, Ronnie Todaro, VP at the Foundation who had led the Women & PD Initiative, applied for a PCORI (Patient Centered Outcome Research Institute) grant to help fund Women & PD TALK.

Because the grant required patient involvement, I was honored to be named a co-lead on the project, along with Dr. Allison Willis, Assistant Professor of Neurology, Perelman School of Medicine, University of Pennsylvania.  We worked with Megan Feeney, M.P.H.
Manager, Community Engagement at the Parkinson’s Foundation to put everything in place for this initiative.

There were 10 regional forums, with sites chosen to represent large urban areas as well as more rural areas.  Each  forum leadership team included a Woman with Parkinson’s, a Movement Disorders Specialist or Neurologist and an Allied Health Professional.   About 40 participants, both women with PD and Health Professionals attended each of the full day events.  Breakout groups at the forums gave valuable information on Risk, Symptoms, Treatment and Care.

50 people, about a third of them women with Parkinson’s Disease, gathered in Houston at the National Forum to go over the findings from the 10 forums and begin to set some goals and create recommendations and action plans.  There is too much to report here now, but there will be some specific recommendations to improve the care and treatment of women with Parkinson’s in the final report.

Meeting with such strong women, both people with Parkinson’s and health professionals, makes me proud to be a part of the PD community and inspires and empowers me to do more.      Kelly W

What was most interesting to me is that while there are definitely differences in symptoms and reactions to medications, many of the disparities were more cultural and social.  Just a few examples:

  • There are a significant number of women with PD who are caregivers, taking care of children, elderly parents or sick spouses and there is no one to take care of them.
  • Women tend to go to their doctor’s appointments alone, while men do not.  In fact, women go alone to most things related to PD.
  • Women do not go to support groups as often as men.  Some reported that when they went, they were asked who they were taking care of.  No one believed that they were the one with PD.
  • Being treated dismissively by doctors. Told it was all in their heads, and in many cases, especially for younger women, it was because of hormones.
  • Women need to connect to other women with Parkinson’s. There was a lot of talk about the need for mentors to be paired with the newly diagnosed, to make the disease less frightening and be there for them when needed.
  • Exercise, Exercise, Exercise!!!! We can’t say it enough.
  • And finally, can we get rid of that awful caricature of a man hunched over with PD and replace it with the photo above of 11 amazing women with Parkinson’s?

Thank you  Ronnie, Megan and Dr. Allison for giving me the opportunity to be an integral part of this team.

A full report will be issued, with specific recommendations and strategies to improve the lives of women with Parkinson’s Disease, sometime in the spring of 2019.     I am looking forward to sharing it with you.  In the meantime, click here for the link for the press release about Women and PD TALK.

Hey baby it’s cold outside!

From somewhere in the North Atlantic between Iceland and Greenland

Hey baby it’s cold outside! And windy and rainy. Not a good combination for Parkies. Mr. Twitchy and I embarked on a cruise from Reykjavík to Montreal yesterday after a couple of great days exploring Iceland. Submerging in the warm waters of the Blue Lagoon was truly therapeutic. The sights along the Golden Circle were wonderful. And now we are on the second of 3 days at sea on a rockin’and rollin’ North Atlantic. Walking anywhere on the ship has been a challenge, adding PD to this has only made it more fun!!! In fact, everyone on the ship looks like the have PD balance problems. When I returned to my suite at noon, I was treated to the most spectacular rainbow! That made up for the bad weather.

In Other News

October 1 marks the return of Breast Cancer Awareness month. I have seen a big uptick of views of the blog post “ Breast Cancer vs Parkinsons“ in the last few weeks. What I wrote two years ago in that post still holds true. Bloomingdales was already pushing their promotion when I was there last week. And then I got an email the other day that the very popular game, Words With Friends, was jumping into the promotions as well. This October, they want you to join Words With Friends as you “Play Pink For The Cure”; if 6 million Pink Ribbon tiles are played before 10/21, Zynga will donate $100,000 to benefit Susan G. Komen.

This means that a lot of people will be playing the game and will be getting the message about supporting breast cancer research. That’s terrific, and I will support it because I am a Breast Cancer survivor. Maybe we can convince Zynga, the game company that produced Words With Friends, and other game developers to do the same thing for PD next April. Think of the possibilities!

In the meantime, you can support the Parkinson’s Foundation by signing up for a Moving Day walk near you this fall. If you live in the Los Angeles area and would like to walk with Twitchy Women on October 21, join our team. If you can’t join us, consider making a donation.

If you can, support both causes. These organizations are doing great work to help find a cure and to improve the lives of those who have Breast Cancer and/or Parkinson’s Disease.

Jennifer Parkinson Gives Parkinson’s Patients a Fighting Chance through Boxing

Our last name is Parkinson’s, isn’t that why you have it?

Jen’s 5 year old son

This was originally published as “Yes, Wonder Woman really exists and she looks like Jen Parkinson”

Wonder Woman really exists and she looks like Jen Parkinson.

Jennifer Parkinson, yes, that is her real name, is a role model for everyone with Young Onset Parkinson’s Disease (YOPD) and for those of us who are older with PD.  Her story is inspiring,  She is tall, young, beautiful and athletic – Gal Gadot watch out!  And she is the perfect example of how to manage your life while living with Parkinson’s Disease.

We had a chance to meet on Friday morning before the Davis Phinney Foundation‘s Victory Summit in Pasadena, California, where she was scheduled to speak later that day about Women and Parkinson’s Disease.  We initially met almost 3 years ago at a conference sponsored by The Women & PD

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Sharon vs Jen

Initiative, which is a program of the Parkinson’s Disease Foundation (now the Parkinson’s Foundation).  Since I was taking boxing classes and Jen teaches boxing, we were asked to give a boxing demo to the other women who attended.  I am the short one in the photo!

On Friday, Jen looked great, no visible tremors or other signs of PD.   Listening to her story, it is hard to believe that this person sitting in front of me went through so much hardship with PD.  Diagnosed 13 years ago at 29, with symptoms that started soon after her son was born, life was not so good.  Jen had a difficult pregnancy, and 6 weeks after her son was born, she noticed a tremor in her right hand.   Even though she was trained as an RN, she never thought that it was PD.  When she went back to work, the shaking made it difficult to work with patients, her writing became illegible, her foot started to shake, making driving difficult, and then her blood pressure started dropping and her heart rate at times went from 30-180.  It was not long before she had to stop working.

“Here’s a prescription, I will see you in 6 months.  Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.”

After 2 years of seeing numerous doctors in search of a diagnosis, a visit to an endocrinologist finally put her on the right path.  He sent her to a neurologist that she   worked with at the hospital, who finally diagnosed her with PD.  He put her on Amantadine to see if it would help and said to her:  “Here’s a prescription, I will see you in 6 months.  Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.”  Not what she wanted to hear at age 32, with a 2 year old and 5 year old.  He gave her no information, no support groups, nothing about diet or exercise.

She stopped working, went on disability and then got divorced.  She was facing life as a single mother and her symptoms were getting worse, with freezing episodes 2-3 times a day.  She started using a rescue drug that was an injection, but could not administer it to herself since she was home alone.  She often had to wait out the freezing episodes.

That is when she heard about Rock Steady Boxing.  At the time it was only offered in Indiana, so she called a local boxing gym and started training there.  She was training in a regular class with the guys who were getting in the ring.  It was incredibly intense, especially since Jen was the type of person who signed up for the gym but never went until it was time to cancel the membership.  She felt immediate results from the boxing.  She felt good on the days she went to class, and terrible on the other days.

Jen eventually helped set up Rock Steady Boxing with a friend in Costa Mesa, a 2 hour drive from her house.  Soon after, a boxing gym opened up near her.  She went to a class which was taught by her now business partner, Josh.  They eventually opened up a Rock Steady Boxing, and went from 14 to 90 people in a short time.  But they soon realized that they needed more than just boxing classes.  It had become clear that a support resource for people with Parkinson’s and their families was needed, with other services besides boxing classes.  And they wanted to open it up to people with other neurologic diseases.  2 years ago, on September 12, 2016, Jen and Josh opened Neuroboxing.  Today they now have 5 locations and also train other trainers to teach neuroboxing.  All of this happened in 2 years.

I asked Jen how she feels.  There are times that are not great, but most of the time she is feeling good.  Her children don’t remember a time that she did not have Parkinson’s.  They remember when she could not get out of bed and when they used to have to help her.  When her son was 5, he once asked if he was going to have Parkinson’s too.  He said:  “our last name is Parkinson’s, isn’t that why you have it?”

When asked if she knew what caused her PD, Jen said that she was in a car accident several months before her symptoms started.  She started having some cognitive issues soon after.  Jen later discovered that 4 other nurses she had worked with at the same facility all have PD.   The nurses are wondering if there was something in the facility that  affected all of them.

Although I had to leave before Jen’s presentation later that afternoon, I heard that she was terrific, inspiring and a true role model.  Our Wonder Woman, Jen Parkinson continues to amaze.

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DC Comics Wonder Woman

 

Thank you to Medtronic, one of the sponsors of the Victory Summit, who arranged for me to meet with Jen at the Summit.  While Jennifer does not have DBS, it has been very beneficial to many other patients with Parkinson’s and Medtronic has a line of DBS systems.

 

What’s Your Parkinson’s IQ?

You have just been diagnosed.  Or you have been living with PD for 20 years.  How much do you really know about Parkinson’s?  What is your Parkinson’s IQ?  Take this test and find out:

  1.  MDS stands for  a) multiple doctors who treat your Parkinson’s  b) Movement Disorders Specialist c) My Dog Spot
  2.  Dyskinesia is a) Strange, jerky movements b) You can’t remember song titles c) Bad dancing at the Disco
  3.  A DaTSCaN is what?  a)  a CT scan for Dogs  b) a brain scan that helps diagnose Parkinson’s  c) I have no idea
  4. What are internal tremors ?  a) shaking in your house  b) small tremors before an earthquake  c) the feeling that you are shaking inside your body
  5. Dystonia is  a) uncontrollable and intense muscle spasms  b) bad sounding music  c)you are tone deaf and cannot carry a tune
  6.  Parkinson’s can be caused by  a) pesticides  b) genetic mutations  c) traumatic brain injury d) sometimes we just don’t know  e) microbes in your gut f) all of the above
  7. Everyone with Parkinsons has visible tremors. a) true b) false
  8. Women account for what percentage of people with Parkinson’s? a) 10% b) 35%. c)50% d)75%
  9. The average age of onset for Parkinsons is a) 40 b) 50 c) 60 d) 70
  10. Research has shown that Exercise is one of the best things you can do to live well with Parkinsons. Which of the following exercises are recommended? A) running b) swimming c) yoga. d) boxing. e) dancing f)cycling g) tai chi h) all of the above I) none of the above
Correct answers: 1 b,  2 a, 3 b, 4 c, 5 a,  6 f,  7  b,  8 b,  9 c, 10 h

How did you do?

0-5 You need to read to the end of this post and then take a look at some of my favorite websites and books about PD

6-8 Almost an expert, a little more studying and you will be a……PreviewInstanceData.jpg

9-10 PD Superstar! You can write this for me

The Answers:

  1.  MDS stands for Movement Disorders Specialist, a neurologist who has received extra training in Parkinson’s Disease and other movement disorders.  If you are currently seeing a neurologist, you may want to consult with a MDS  occasionally to make sure you are getting the right information and treatment.
  2. Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson’s itself. Rather, they are a complication from some Parkinson’s medications. (Parkinson’s Foundation website)
  3. DaTSCAN™ is a specialized imaging technique that allows doctors to capture detailed pictures of the dopamine neurons in your brain. This technique involves the use of a radiopharmaceutical agent (a chemical compound containing an isotope, or radioactive element). The radiopharmaceutical agent is injected into a vein and taken up by the brain’s dopamine cells. The cells can then be detected through SPECT (single photon emission computed tomography) scanning. In this way it is possible to determine whether there is a reduction in dopamine cells, which usually occurs in the presence of Parkinson’s disease. (Michael J Fox Foundation)
  4. Internal tremors seem to be a well kept secret among People with Parkinson’s.Internal tremors are shaking sensations felt inside the body. They occur without visible movement, which external tremors produce.   A person may experience internal tremors in the trunk, arms, legs, or internal organs.
  5. Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD). People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. (Parkinsons Foundation)
  6. Most people have Idiopathic PD, meaning there is no known cause.  A small percentage have a genetic mutation (LRRK2, PINK1 or GBA), traumatic brain injury or pesticide exposure as their cause.  Finally, the latest research shows there may be a connection between microbes in your gut and PD.
  7. Most people with PD do not have visible tremors at the beginning  They may have stiffness, Dystonia or other symptoms that are not readily visible.  Some people with visible tremors do NOT have Parkinson’s.  They may have Essential Tremor or some other type of tremor.
  8. Men are diagnosed more than women by a margin of about 2:1.  However, it often takes women much longer to get a diagnosis, especially if pre-menopausal. (more on that in a future post)
  9. The average age for onset is 60. Although aging increases the odds of having PD, we are not all old.  Persons diagnosed under 50 are considered young onset or YOPD.  Michael J Fox is a prime example of someone diagnosed at a young age.
  10. Exercise in any way, shape or form is recommended, as long as you do not do something that will cause injury.  Start slow if you have been inactive for a long time, either with a physical therapist or personal trainer.  The more intense exercise you do, the better, showing longer lasting effects.  Walking the dog, briskly, PD Dance classes, PD Boxing classes, yoga classes are just a few suggestions.  Find something you like so that you will continue to do it.  Just do something everyday.  You will feel better, get out of the house, and maybe even find a support group among your peers.

The bottom line is, to live well with Parkinson’s, you need to do some homework.  Get out and exercise, meet other people with Parkinson’s who you are comfortable talking to, read about Parkinson’s (but not too much).  There are a lot of resources available to you. Most importantly, know that you are not in this alone.   There is a large community of people with PD whom you can connect with in support groups, exercise classes or on-line.  With their help, you too, can become a PD Superstar!