Some good reads for Parkies

 I won’t sit back and allow Parkinson’s to destroy my world. I’ll learn the language, understand the context of my new reality, and then encourage others to thrive with me in this battle.   Tim Hague

Over the years, I have read a number of books about Parkinson’s Disease. Some written by the “experts”, some by people with Parkinson’s telling their stories and even a few written by people trying to sell a “cure” to unsuspecting people who are desperately looking for an easy way to “get well.”

There are many books written by People with Parkinson’s, many of whom also write PD blogs.  Some are good, some are dreadful. There is a saying about PD bloggers, that if you write a blog, you will write a book. I don’t necessarily agree with this because in today’s world of sound bites and short attention spans, many of us write about whatever interests us at the time we are writing a blog post. There is no narrative, just a collection of short essays (do they even qualify as essays anymore?) that don’t always fit together.

For those of you who were diagnosed a while ago, there may be nothing new here, but I would love to hear any suggestions for books that I have missed. For those of you who are newly diagnosed, I hope that this will be give you a good place to start learning about how you can live well with PD.

I have listened to a number of these books on Audible, especially when they have been narrated by the author. Hearing it in their own voice often lends subtleties to the narrative that you don’t get just by reading the book. I also like to listen while I am out walking. Sometimes you have to keep going just to finish listening to a good chapter, so it can help you get closer to your exercise goal at the same time!

By the way, these make great gifts for People with Parkinson’s and/or their Care Partners.

New in 2018

Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined by Tim Hague –  Hague was diagnosed with  YOPD at age 46 and wonPerseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined Canada’s Amazing Race race with his son, Tim Jr., 3 years later.  The highlight of the book is his blow by blow account of the Race, which he (and his opponents) never expected to win.  Hague is truly inspirational in talking about how he lives his life to the fullest with PD. Listen to it if you can.  Whether or not you have Parkinson’s,  you will be inspired to live your best.

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!  by Sheryl Jedlinski.  Jedlinski was one of the firstbloggers that I followed.  Always informative, humorous and a good read.  A great book for the newly diagnosed.

The Best from Previous Years:

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman.

Brain Storms: The Race to Unlock the Mysteries of Parkinson's DiseaseStill my all time favorite.  After his own diagnosis with PD, Palfreman, an awardscience journalist, wrote this insightful book about the doctors, researchers, and patients  who continue to hunt for a cure for Parkinson’s Disease.  A must read for anyone with PD and their families.

Always Looking Up: The Adventures of an Incurable Optimist         Always Looking Up: The Adventures of an Incurable Optimist by [Fox, Michael J.]        by Michael J Fox.  I recommend listening to this book if you can.  Fox is always inspirational and you can almost see the twinkle in his eye as he narrates the book.

 

Parkinson’s Diva by Dr. Maria de Leon.  Fun, informative book for womenParkinson's Diva with PD by Dr. Maria who was a Movement Disorders Specialist before she was diagnosed with YOPD.  We met three years ago at the Women & PD Initiative conference sponsored by the Parkinson’s Foundation and have become good friends.  Maria tells it like it is, with lots of humor along the way.  I challenge you to not laugh when you read about her experience after a massage.

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition and  10 Breakthrough Therapies for Parkinson’s Disease: English Edition by Dr. Michael S. Okun.  Two very good informative books written by the National Medical Director of the Parkinson’s Foundation.

I am looking forward to meeting more Parkinson’s authors at the World Parkinson’s Congress in June.  I hope to find some new favorites to add to my list.  The 7 books listed here should keep you busy reading until then. There are more listed under the heading  My Books and Things I Like   If you have a favorite that is not on my list, please let me know (preferably in the Comments so that others can see it).

 

Giving Thanks Once Again

 

Yes, it’s that time of year again.  As we move into the holiday season, it is a good time to look back on the past year and reflect on the things that we can be thankful for.   I know that for many people with Parkinson’s Disease and other chronic diseases, it is often difficult to find anything good in our lives.  However, if we start by looking at the small things, we may see that there is much to be thankful for.

I saw this morning that Parkinson’s Life, from the UK, just reposted my blogpost from 3 years ago, about 10 things to be grateful for on Thanksgiving.  So if they could use it again, I can.  I reposted this 2 years ago with some changes.  So here it is again, with a few more changes of course, because life has changed in the last 3 years.

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.  I have cut back on the games in the middle of the night, but sleep still eludes me.  The latest research is showing that some of these brain games actually do help with memory.  

Writing this blog is just one of my OCD behaviors.

9.  We can blame our Obsessive/Compulsive behaviors (see #10) on our medications and the non-Parkies will believe us.  Writing this blog is just one of my OCD behaviors.  And because of this, I have begun writing letters to the editor and to others to express my opinion.  And some have even been published.   I have become much more vocal about many things.

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)   Still waking up too early, but I get to walk my dog at dawn and enjoy the sunrise.  And then I play those stupid games….. Still can’t seem to get to yoga on time, but we had another grandchild this year and I often talk to her mother as I am getting ready to leave.   Besides, facetime with the grandchildren is much more important than being on time anywhere.

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.  Fortunately Sinimet has been very effective for me and I am right-handed again.  Yeah!  Another thing to be thankful for. Sinimet is still my saviour!!!

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.  This is probably the most important thing that I have learned in the last few years.   My internist jokes that I know more about PD than he does.

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.  Last January I started a group for women with PD in the Los Angeles area.  As we have gotten to know each other, friendships have blossomed.  We really do have a special bond because of PD. This really is a special bond.  We found each other because of PD, and we are there to support each other cope with PD and other issues.  More importantly, we also get to celebrate many good things together.

4.   Fortunately I have a slowly progressing form of PD, which is controlled by meds.  Better living through Chemistry is my mantra.  And my progression continues to be very slow.  And for that I am very thankful.  The progression is still slow.  I was diagnosed about 10 years ago, and I am very thankful and grateful that I really haven’t had to change much in my life because of Parkinson’s.

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

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.  Our third grandchild was born in July, adding to the joy in our family.  We are truly blessed.  My husband, my daughters and their families give me the greatest joy.  Our fourth grandchild was born this year, and I am most thankful that I can still sit on the floor and play with all of our grandchildren.

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.  I thank all of you for your support over the last year and I hope that we will continue the dialogue for many years to come.  Thank you!   Your ongoing support of this blog has been a giant dopamine boost for me.  Looking forward to sharing my thoughts with you again in the coming year.

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One last thank you:   Thanks to all of you, Twitchy Woman was listed first in Everyday Health’s 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive  and received recognition for the  third year in a row from Feedspot, ranked #30 in their top 50 Parkinson’s blogs.

 

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.

Cranes and Hope 4 PD

We know that there are people in the Parkinson’s Community who are isolated, alone, and losing hope.   We want this project, “Soaring With Hope” to show them and the world that people with Parkinson’s have every reason to hope.

How many of you have heard about Soaring With Hope 4 Parkinsons Disease?

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About a year ago, I wrote a blog post about this amazing project.  The spark for the idea came soon after the last World Parkinson Congress in Portland, Oregon in 2016.

I spent a lot of time together with Naomi, Clara and Amy, at the WPC, meeting people from all around the world who shared our challenges and our hopes.  WPC-Highlights-lead-1024x683We were inspired by the photography murals created by photographer  with PD, Anders M Leines.  So inspired that Clara convinced him to photograph a large group of people with Parkinson’s in front of his fabulous exhibit.

One day at lunch back in Los Angeles, my three friends, Naomi, Clara and Amy, were talking about how Parkinson’s brought them together, creating a wonderful friendship.  How could they be happy with a chronic neurological progressive disorder?  They realized that by sharing their challenges with each other, that there was also hope.

In the Japanese tradition, 1000 is the common number of cranes to fold to represent hope and health.   Naomi, remembering that there were a 1000 Origami Cranes at her wedding as a symbol of hope, suggested that they create an art exhibit using Origami Cranes for the next Congress, which will be in Kyoto, Japan in 2019.  The idea became a passion for all involved.

The purpose of the project is to raise global awareness while giving hope to all in the Parkinson’s community.  The project started slowly, but has exploded in recent months.  Messages and folded cranes are coming in from around the world.   Soaring with Hope 4 Parkinsons Disease is now an official exhibitor at the WPC Art Walk in Kyoto.   They have received some corporate funding and there will be a raffle for two $2500 travel grants to the WPC.  For more information about the raffle click here.

Soaring with Hope has also been doing outreach into the community.  In the Los Angeles area, they have been having workshops with schools, Girl Scout troops and more, educating them about Parkinson’s Disease while folding cranes.  They have also been consulting with other PwP’s around the world who are doing outreach into their own communities with this project.  Their latest collaboration for international outreach is with Dance for PD, a program of the Mark Morris Dance Group in NY.  On December 1, they will be launching the PD Crane Dance Project, more information to follow.

The initial goal was 10,000 hand folded cranes each with a message of hope, and made with purpose and intention. Amazingly, they have surpassed that goal and now have    14,000 cranes. They have over 6000 messages from 21 countries, but need more messages.*

Naomi, Clara and Amy say that each crane will represent a unique story about one person’s hope, 14,000 + cranes flying together at the 2019 World Parkinson’s Congress in Kyoto Japan will be a powerful wave of hope and dopamine carrying us into a future where Parkinson’s is no longer a part of us.

*For more information on how you can participate, go to soaringwithhope4pd.org/