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.

 

Looking back at 2017 and forward to 2018

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year.  It has been an adventure for me.   I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer.  Hard to believe that it has been that long.  I am doing quite well, with my symptoms mostly relieved by medication and exercise.  Of course there are ups and downs, especially while living with Parkinson’s.  But for the most part, nothing holds me back.  Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

  1. The best part:  The continued growth of this blog has been a blessing beyound description.  The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words.  Let’s continue to read and comment  and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.
  2. The most curious part:  The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden.  The dichotomy seemed to resonate with a lot of people.  Sex and the PD Woman came in a pretty distant sixth place.  Not sure what that means.  (Maybe an update with pictures in 2018?)
  3. The most humbling part:  Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.
  4. The most exciting part:  Working with the Parkinson’s Foundation to create the study Women & PD TALK,  which grew out of the Women & Parkinson’s Initiative two years ago.   Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI),  Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways.  Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s.  It has  been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations.  The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

  1. The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT.   This will be the 3rd of the 10 forums being held around the US.
  2. The anticipated report and recommendations from Women & PD TALK  for improving care and outcome for Women with PD.
  3. Working with the World Parkinson Coalition to get ready for Kyoto in 2019
  4. Watching for, and sharing with you, the latest news on PD .  We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage.  Will this be the year for the big breakthrough?
  5. Oh, and we are expecting our 4th grandchild in May.  So there’s that, too.happy-new-year-2018-animation-fireworks-6062126467.gif

At a Loss, Again…..

Over a lifetime, we will lose some two hundred thousand items apiece, plus money, relationships, elections, loved ones.

Kathryn Schulz in The New Yorker, 2/6/2017

 

 

I ran across an article in The New Yorker today called “When Things Go Missing” by Kathryn Schulz.   She talks first about losing items and then about the loss of her father.  So much resonated in this article, especially since I “lost” my mother last year.  I continue to lose things on an alarmingly regular basis.  Sometimes I find them, sometimes I don’t.  I just blame it on Parkinson’s.

This time it wasn’t because of Parkinson’s.  I wish it were that easy.   Yesterday I learned about a new kind of loss.  I went to lunch with friends at a local restaurant.  I was seated at a table, next to the wall.  I put my handbag at my feet, put a package on top, and then my friend’s umbrella on top of that to get it out of the way.  An hour later, when we went to leave, the umbrella was in a different place and the package was on the floor.  Ok, now I knew I put the umbrella on the other side of my chair.  How did it move by itself?  Was there some kind of magic force in the restaurant?  Fairies, maybe?   And my purse was nowhere to be found.  We looked under the table, under the table behind us.  Nothing. Now other patrons joined in the search along with the restaurant manager.

One friend suggested that maybe I didn’t bring my purse.  No, I remember putting my umbrella in my purse when I sat down.  The manager said he would look at the security tapes.  Sure enough, I had my purse when I walked in.  The scary part is that he described in detail what he saw on the video.  We were deeply engaged in conversation when two well dressed men sat at the table behind us.  One of them slid my purse out and covered it with something and they promptly left, without ordering.  We were apparently too involved in our conversation to notice anything.  Fortunately the video cameras saw everything.

I was numb.  Violated.   Everything was in my purse, except for the one thing that could help us locate it.  My cell phone.  We checked  the “find my iPhone” app to see if I had my iPad in my purse.  No, it was at safe at my house.  But everything else was gone.  My drivers license, car key, house key, credit cards and more.  Which meant that the thieves not only had my belongings, they had my address.  They could get into my house and drive my car away.  Fortunately, the Beverly Hills Police insisted on checking my house before I went in to make sure that no one had entered while I was out.

Now I had to figure out what was actually missing.  Which credit cards needed to be replaced.  Make an appointment to get a new driver’s license – they won’t let you do that on line.   Fortunately, I have my passport to serve as ID for the next few weeks. Changed the locks, ordered a new key for my car.  The list goes on and on.  Today I went to put on my sunglasses, and discovered that they were gone, too.  Have you ever taken an inventory of your wallet or handbag?  It is amazing how much of our lives is crammed into that most essential accessory.  It feels like I have lost 1/2 of those 200,000 items in the last two days.

As I said, this time I can’t blame it on Parkinson’s.  This was not a mental lapse.  I don’t think my identity has been stolen, but it certainly feels like it.  I have to reconstruct everything that I carried with me.  I hope that the police will find these two men but I am sure they have already taken the money (which wasn’t very much) and discarded everything else.

We have traveled the world and we are always given warnings to keep our belongings close and to leave everything valuable at home.  We have never had anything stolen on a trip.  At home, we don’t think about it and my purse gets stolen 6 blocks from my house in Beverly Hills.  Go figure!!!!

Changing subjects:  I woke up to some good news this morning.  Feedspot announced its Top 50 Parkinson’s Blogs and Twitchy Woman was number 29!  Thank you for your support and loyalty and helping to make it happen.