Blame it on Parkinson’s? Or Not?

 

So many symptoms of Parkinson’s are similar to the aches and pains that come with aging.  Sometimes it is difficult to determine what may be the cause of a new symptom.  So when I started noticing that my depth perception was off a couple of years ago, I blamed it on PD.  Those haloes that started to appear around street lights at night – PD.  And the moon began to bloom, surrounded by what appeared to be petals – PD.   After all, Parkinson’s can cause vision problems such as dry eyes, which I had,

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The moon growing petals!

and blurry or double vision.  The blink reflex can be slowed down, leading to less blinking and dry eyes.  One of the first things one neurologist said to me is that when I entered his office “he saw it in my eyes”, when I asked why, he said that I did not blink enough.

So let’s backtrack to 20 years ago.  I was fortunate enough to have Lasik surgery to correct my vision.  I had been wearing glasses since I was 10, contact lenses since I was 13.  Imagine waking up the morning after surgery and being able to see the alarm clock for the first time in almost 40 years without glasses.  Lasik surgery changed my life and my vision was stable for many years.  So when pesky symptoms such as dry eyes started to become annoying, I assumed I could blame it on Parkinson’s.

Then I started having other problems.  My depth perception seemed off at times.  And for some reason, I no longer needed to use reading glasses.   I liked that, but had no idea why this changed.  About 1 1/2 years ago I went to get my eyes checked to find out what was going on.  My optometrist noticed a cataract forming in my left eye, which accounted for the depth perception problems.  And because my vision was different in each eye, reading became easier.  So I was wrong.  This was not a PD issue.  It was an aging problem.  Everyone eventually developes cataracts, which cloud the lens in your cornea, often distorting everything you see around you.  This accounted for the haloes I was seeing instead of stoplights, and for the flowery moon.

Within 1 1/2 years, cataracts in both eyes progressed faster than we both expected, making night driving almost impossible, even with glasses.  And I kept forgetting to put on my glasses.  After 20 years of not wearing them, I could not get used to wearing glasses again, so I often took them off and then forgot where I put them (many times they were on top of my head).  Kind of like walking into a room and forgetting why you came there.

So to make a long story short, after 1 1/2 years and 3 eyeglass prescription changes later, my optometrist decided that it was time to get rid of the cataracts.  While I was having trouble seeing out, he was having trouble seeing into my eyes.  He then referred me to the same eye surgeon who had done my Lasik surgery.   The interesting thing about Cataract surgery is that it is mandated by Medicare that you must have only one eye done at a time, with a minimum of two weeks in between.  Which means being sedated lightly (not totally asleep) by an anesthesiologist twice within a few weeks. You need to be somewhat awake but relaxed during the first part of the procedure, so that you can watch the psychedelic light show going on in your eye.

In the last few weeks there have been some concerns raised in the Parkinsons community about anesthesia and PD. All I can tell you is that I had no problems with having anesthesia. If you are considering any surgery and have questions about this, I would suggest that you speak to your Movement Disorders Specialist or Neurologist about the pros and cons of having anesthesia with PD.

As for my eyes, I can see again!  And now I can turn those fun purple prescription glasses into fun purple sunglasses.

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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.

Desperately Seeking the Right Information

This was published several months ago but disappeared into cyberspace. Apparently Parkie hit a wrong key and it went somewhere else.

If you are the average person with Parkinson’s, it probably took you anywhere from 1-3 years to get the right diagnosis.  And once you got the diagnosis, your doctor gave you a prescription to fill and a return appointment 3 months later.  While you were in a state of shock from receiving the diagnosis, you were in no condition to question this.  You went home and crawled into bed, trying to figure out what lies ahead for you.

As a patient advocate, I have met many other People with Parkinson’s (PwP’s) who have had this terrible experience at the time of their diagnosis, myself included.  Yes, there is currently no cure for PD, but there are a lot of things that the person with PD can do to live well.  The delayed diagnosis and lack of education are probably the biggest obstacles for us at the beginning.  We may not be told to exercise.  We may think that PD only happens to older men who are shuffling and stooped over.  We do not know that there are many things that we can do to improve our situation, with medication, exercise, therapy and more.  And we most likely do not know that there are a huge number of people who have been living with PD  for years and are living active productive lives

One of my primary goals, and that of other patient advocates who I have spoken to, is to reach out to Primary Care Physicians and Neurologists to encourage them to do the following to ease the shock of the diagnosis:

1:  Refer patients to a Movement Disorders Specialist (MDS) if there is one nearby.  A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease (PD) and other movement disorders including dystonia, chorea, tics and tremors.  They are more knowledgeable about the latest treatment options, the need for exercise and all things Parkinson’s.

2.  If they cannot refer the patients to a MDS, have materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, local support groups or organizations, and other resources available for the patients.  PwP’s need to learn what they can do to help improve their quality of life early in order to cope with their diagnosis.  This new, unwanted friend will be with them for the rest of their lives, so the sooner a person can take action, the better off they will be.

3.  Schedule a follow-up appointment within a month and encourage the patient to bring someone with them to listen and to ask questions.

4.  Connect the newly diagnosed person with Patient Mentor who can talk to him/her on a personal level about living with PD.   Several organizations have Patient Ambassadors or Mentors who are comfortable in this role and are happy to help.  I have met a number of newly diagnosed Parkies for coffee, and they are always surprised when they see me since I don’t fit the image that they had of someone with PD.

5.  Most importantly, the doctor should tell them to start moving.  Exercise has been shown to be the best medicine for PD.  They should advise the PwP to start slowly if he/she has not been exercising, and increase the duration and intensity over time.  A referral to a physical therapist trained to work with PwP’s is always a good first step to living well with PD.

NO ONE should be sent home with only a prescription and a return appointment 3 months later.  Given the right information and instructions, the newly diagnosed Parkie will be much more prepared for a future with Parkinson’s.

Going to Brain Boot Camp

How many times have you entered a room and could not remember why you went there?  Those names on the tip of your tongue don’t come to you until it is too late.  And where, oh where, did you put your keys?  Cellphone?

Last week I went to camp for a day.  Brain Boot Camp.  Several months ago I received a call from the Longevity Center at UCLA.  They were offering a Brain Boot Camp session for People with Parkinson’s at a discount.  Would I be interested in organizing it for my group?  I sent an email out and got a great response from the LA based Parkie’s on my list.  So much so that we had to schedule a second session to accommodate everyone who wanted to attend.

Memory problems are not unique to Parkinson’s.  They are common with aging.  However, cognitive decline is a big problem for many Parkies, so this class was just one more form of therapy for us to keep our Brains functioning as well as possible.  We can help to slow the cognitive decline by working our brains on an ongoing process.  Just going to one class is not going to have a lasting effect.  It was really a jumpstart for us.  Now we need to utilize the tools we were given.  In addition to the strategies that we learned for memory,  there are other things we can do to keep the neurons functioning.  We talked about diet, sleep, and activities such as  learning a new skill, a new language, or musical instrument, doing crossword puzzles, sudoku, and other brain games that are offered online.

Last week was the first of two sessions, led by Angela Huntsman, PhD.                          Brain Boot Camp is a memory class that was developed by Dr. Gary Small, professor of Psychiatry and Director of the UCLA Longevity Center, to help people learn strategies to improve their memory.  His book, “2 Weeks To A Younger Brain: An Innovative Program for a Better Memory and Sharper Mind” covers what we learned in class and more.  In the class we learned about the different types of memory and how they are stored in the brain.  We also discussed diet, sleep and other factors that may affect memory.

Dr. Huntsman began with a story.  She met her new neighbors, Brett and Kate, and wanted to find a way to remember their names.  Aha!  Brett reminded her of her Brita water filter.  Unfortunately I don’t remember what her clue was for Kate, I apparently did not commit it to my long term memory.   Periodically throughout the day, she would ask us who her new neighbors were, and we all remembered!   By telling us the story, we had to focus, so recall became much easier.

The key to improving your memory is to FOCUS.  Too many times we don’t pay enough attention to remember things, which can be an embarrassment when you have forgotten your host’s name 5 minutes after being introduced.  We usually can remember 5-7 chunks of info, so to remember the names of those people you just met or that grocery list, find a way to make it meaningul.  It could be putting the names or items together in a story, or visualization.

The first class was great.  Everyone who attended really enjoyed it.  The second class will be held next Wednesday, October 24 at 9:00 am at UCLA.  There are still a few spots available, so please get in touch with me by Sunday if you want to attend.*  There are classes offered around the country.  To find out if there is one near you, click here.

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Additional support for this event was provided by the Meyrow Foundation’s Wellness Fund

*Brain Boot Camp Flyer

Tennis Anyone?

Tennis seems to be the perfect exercise to help PD – the hand-eye coordination, sudden quick movements, the thinking process used to execute a shot.  Jan Jackson

Tennis has been one of my passions since I was a child, playing with wooden tennis rackets that we had to store in a wooden frame to keep them from

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I wish I still had this racket!

warping. My earliest tennis idol was Billy Jean King and I even had a Billy Jean King tennis racket. When Mr Twitchy and I moved to Los Angeles, playing tennis was an easy way to meet new people.

Eventually the wooden tennis racket gave way to the new lighter graphite rackets in the 80’s and my tennis game improved. My tennis idols and my rackets have changed over the years and I have been fortunate to have attended 3 of the 4 Tennis Open tournaments in the last 10 years. I am hoping that I will be able to get to the fourth, the French Open, in the next few years.

When we moved to a new house and new school for our kids, tennis was again the intro to new friends. In fact, I have been playing in a regular game for over 25 years with three other women whom I met at the elementary school Tennis Tournament Fundraiser so long ago. They are my friends, my confidants.

After my tremor started 10 years ago, they were the first to know about it. When it was difficult to talk about my Parkinsons diagnosis, they were the ones who were there for me, refusing to let me take the easy way out and quit playing tennis. When I told one doctor about them, his advice was to “keep those friends”.  That was the easiest doctor’s order I have ever followed. Tennis has literally kept me going through the worst of times with PD. It hasn’t always been easy. My stamina and balance vary from week to week, my feet don’t always move as well as they should and I frequently lose my grip on my racket for no reason. I have often thought about finding a way to glue my racket to my hand so that I can’t lose my grip.

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My photo of Rafa at Wimbledon, 2010

So I was not surprised to see a website about Tennis and PD posted by PD blogger, Gary Sharpe, about the benefits of tennis for Parkinson’s from a program titled  Educational Tennis For Parkinson.  The only problem is that the article is in Italian!  Fortunately, Google translate came to the rescue.  From their website comes this description of their program:

Tennis by many scholars is considered the most complete sport. The Educational Tennis Program for Parkinson ® program specifically designed and created for those suffering from Parkinson’s disease in the initial and intermediate phase, tends to help them to carry out a sport activity whose main objectives are: to develop cognitive skills, to stimulate the motility of everything the body, develop the coordination, stimulate the respiratory system, stimulate concentration, develop automatisms, develop the metabolic function, favor the reappropriation of a serene relationship with one’s physicality, enhancing one’s own potentiality, support for an improvement in the quality of life . (please excuse grammatical errors, this is directly from the Google translation)

Whew!  That is quite an ambitious statement!  I love the “serene relationship” part.  Overall, I agree with them totally.  Tennis is a great total workout for you, requiring hand-eye coordination (not always easy with PD), quick movements and lots of concentration.

Sharpe also posted an article by Jan Jackson, a woman with PD who plays 🎾, this time in English.   She put into words exactly what it has felt like for me playing tennis with PD.  She increased the amount of time she plays tennis because of PD.  On the other hand, I had decreased my playing to once a week because I found that there was little extra time for tennis in addition to my regular daily exercise programs (yoga, boxing, etc.)  However, I have recently added a second day of tennis, with a “Live Ball”* clinic at the club we belong to, that has really helped improve my game with PD.  I am hoping to be able to add another day of tennis to my workout schedule sometime soon.

My hope is that I will continue to play tennis with my friends, Gayle, Martha and Lenore,  for many more years to come.  Thank you for being there for me all these years.

*Live Ball is a fun doubles king/queen of the courts-type game played where tennis balls are fed by a tennis pro to start points instead of serves.