Happy Birthdays to Me

As you get older, three things happen: The first is your memory goes, and I can’t remember the other two.”

~ Norman Wisdom

My birthdays are coming up next week.  Yes, Birthdays.  One for my real birthday; one for my time with PD.  No, I won’t say how old my real age (more than 50 more than my PD age) is, but I am also marking my 10th birthday from the onset of Parkinson’s symptoms this month.  I did not know then, of course, that it was Parkinson’s.  Just that something was wrong.

I was writing thank-you notes after being honored at an event.  There were a lot to write, and every once in a while, when I was writing, my foot started to twitch.  I would shake it off, and go back to writing.  It was more annoying than troubling.  It would come and go, always when I was writing.  Then it disappeared for a while, only to return several months later after I fell and broke my ankle (on the non-twitching foot).  After that, the twitch never went away.  At the time, I thought that maybe I did something when I fell to cause it; I have since learned that the PD was there and that the trauma may have set it free.  The tremor eventually moved to my hand (same side) and by the end of the year, my doctor was convinced that it was PD and sent me to a neurologist.

It is likely that I had some PD symptoms before I noticed my foot shaking 10 years ago, but for all intents and purposes, I can say with certainty that my new life began in March, 2008.  My new “normal” had begun and now I don’t even remember what the old “normal” was like.   Within a year, I felt like I had aged 10 years.   Things that were easy before had become a challenge.  This was not how I had imagined my future would be.

PD takes things away from you, but I learned that sometimes you can get some of them back.  Like many of us, I went  through the usual phases of grief — denial, anger, bargaining, depression and acceptance — not necessarily in that order or in a straight line. Then I started to fight back.  Knowledge and exercise (and a few drugs) changed my life. I had always exercised regularly, working out with a trainer for years.  I added yoga and then boxing to my regimen. I started feeling better, moving better and (according to friends and family) looking healthier.  My new “normal” will never be the same as the old “normal”, but it was looking much better than it did several years before.  And the new me was ready to take on the world.

We mark time in our lives with birthdays, anniversaries, and other milestones.   After 10 years, I am doing well.  So well, that the neurologist I saw in Israel last month declared that I was very well “controlled” (and “preserved”?!?!) after 10 years with PD.  I just have to remember that any time I am feeling like my PD is getting worse.

So this week it is time to celebrate both the old 60-something me and the new 10 year old me.  Maybe in 3 years I will even do something to celebrate being 13 that my old me never did. Have a (PD) Bat Mitzvah!*



*Bar Mitzvah, or Bat Mitzvah for girls, is a Jewish ritual that celebrates the coming of age in the Jewish community.  Traditionally, the Bar/Bat Mitzvah celebrant  reads Hebrew from the Torah (5 Books of Moses) in the synagogue on that day.  Learning another language, of course, is an exercise that is recommended for People with PD to help restore the neurons in the brain.  Another reason to celebrate!

Travels with Parkinson’s

It’s a challenging, life-changing condition, but not a death sentence

Debbie Shapiro

We returned home from Israel on Tuesday, and it has taken a few days to settle back in.  A big time change is not easy for people without medical issues, although Mr. Twitchy and I have been fortunate to usually be able to adjust pretty quickly.   The biggest issue for me and most of the Parkies I have spoken to about traveling, is the disruption of our medication schedules.  With a 15 hour flight home, coupled with the 10 hour time change, I just kept taking my Carbidopa/Levadopa every 5-6 hours and hoped that would work.  The timing of the other medications are not as crucial for calming down my symptoms.

One thing I took with me that was very useful was a pair of adjustable walking poles like these in the photo.  When walking through archeological sites and uneven terrain, I use them to prevent tripping and falls.  Because we encountered a lot of rain on this trip, the poles were also very useful on wet pavement, dirt paths and stairs.  They look much better than a cane or walker, while providing just as much safety.  I found that I only needed to use one pole most of the time.  When collapsed, they fit easily into my suitcase.  (click on the photo to see details)

Before I left for Israel, I arranged to meet with several people about research and services provided for people with PD living there.  One of the people I contacted is Debbie Shapiro, who is also a blogger for the 2019 World Parkinson Congress.   Debbie attended the WPC in Portland with Dr. Tanya Gurevitch from Sourasky Medical Center in Tel Aviv (more about her and others I met in Israel in a future post).  Debbie, a mother of 9 originally from San Francisco who has PD, was so inspired by what she saw at the WPC that she came home determined to do something for people with Parkinson’s in Jerusalem.

Posing as a hiker with my walking stick!

Debbie’s experience was much like mine.  We both became well informed about Parkinson’s after our diagnoses in order to cope with it.  It did not take long for other people started reaching out to us because we were willing to speak to others about coping and living with the disease.  In my case, I started this blog to reach out to others more easily and share our experiences in this exclusive club.

For Debbie, it meant starting a program for people with Parkinson’s in Jerusalem where there was nothing offered. Tikvah4Parkinson, (Tikvah means Hope) provides exercise programs, boxing, support groups, etc.  In other words, a community for PwP’s.   Debbie has no background in physical therapy, speech therapy, tai chi, or any of the other things that are offered by Tikvah, but called in experts to help her put it all together.  Her program has been so successful that she is is moving into a larger space and is looking for help to manage the program.  She told me that many people in Israel believe that they will only live 5 years after their diagnosis and do little to improve their quality of life.  She wants that to change. Debbie says: “We need to make people aware of the disease and help them realize that it’s a challenging, life-changing condition, but not a death sentence.”  Because of her passion for this project, the people attending her programs are all showing improvement in their symptoms and their outlook on life.  She is definitely making life better for many with Parkinson’s in Jerusalem.

To see a video about Tivkah4Parkinson, click here


Just keep on moving…..

Nearly two weeks ago, Mr. Twitchy and I embarked on a two week trip to Israel with friends.  This is the fifth year in a row that we have traveled together and they have seen me at my worst, before starting Sinimet, and at my best.  We have reflected on how well all four of us have done on these trips, which often move at a very fast and strenuous pace. We try to fit way too much in to these trips, because basically, we don’t want to miss anything!

We have traveled all over Israel, from the northern border

Walking on the ruins at Beit She’an

to the south in Eilat, including a day trip to Petra, Jordan.  We jokingly call our free days our “Days at Sea” since last year we took a Panama Canal cruise that had 9, count em, 9 days at sea.  Being the type A personality that I am, I dreaded those days at sea.  But they turned out to be the best part of the cruise.

Yes, we have enjoyed the few “days at sea”, but the rest of the time we were running around like maniacs, checking to make sure that we didn’t miss a thing and to see which day had the most steps.  Last Monday in the Old City of Jerusalem was the winner as it topped 20,000 steps!

The Treasury at Petra

But what really made us feel good was the fact that we walked uphill for 1 1/2 mlles yesterday in Petra, without any signs of fatigue, passing much younger people who probably thought that they were in much better shape than us old people. They were huffing and puffing their way up stuggling to keep our pace, and we were just fine.

Which just goes to show you that exercise definitely benefits everyone, no matter what age you are.  And for those of us with PD, it really is essential.  Without exercise I could not have kept up with the group, nor would I have felt as good as I did. As one of my PD boxing pals said so eloquently:  “I am in the best shape I have ever been.  And it is all because of Parkinson’s.”

Photos by Sharon Krischer

The Twitchy Woman Unscientific Study, Dan’s Progress and More

I know you are all waiting eagerly for the results of the very unscientific study that was posted a couple of weeks ago about dominant hand and the start of Parkinson’s symptoms.  As of two days ago there were 299 responses in various forms.

The results were interesting, but defiinitely not conclusive.  Those whose symptoms started on their dominant side accounted for only 52%.  The rest had symptoms begin on the opposite side, or occasionally both sides at once.  I would love to talk to someone who would like to collaborate on this on in a more “scientific” way.  Please contact me if you are interested.  But in the meantime, here are the results, simplified because the original survey was too confusing, even for me, the designer of it:

299 responses

156 or 52%  dominant side

137 or 46% non-dominant

6 or 2% other, both sides, stroke residual

Interesting trivia – 3 reported being naturally left-handed but forced to write with their right hand in school.  Their tremors started on left side.  I counted these as starting on the dominant side.

One of the things I learned is that most people preferred to just respond with a yes or no on Facebook instead of using the  Survey Monkey link provided, and later the WordPress Poll. I changed to the much simpler poll when I saw how people were responding.   Since this post was shared numerous times on FB (over 140!) I have no way of knowing how many people actually responded.

So the most important thing that came out of this is that Parkies don’t pay attention to instructions!  A simple yes or no was all that you wanted to give.   And some of the answers didn’t even make sense!

Somehow there has to be a way to make use of social media to reach out to large numbers of people and get the data that you want.  It can’t be too complicated, for it seems that our reduced attention spans don’t allow for more complex answers.

Dan’s Progress

Dan continues to do very well with the Path Finder shoes.  When he turned them over to Vince, he felt a definite increase in this freezing episodes.  Vince tried it out with his PT, but it did not work for him, unfortunately.  He returned the shoes to Dan, who is now a very happy camper.  I have asked him to write about his experience so that I can share it with you here in a future post.

A New Book for Parkie’s

 One of the first blogs that I followed after my diagnosis was PDPlan4Life which was written by Sheryl Jedlinski and Jean Burns.  Sheryl’s humorous writing and Jean’s illustrations gave me hope that I could live well with PD.  When I heard that Sheryl recently published Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis! , I immediately ordered the book.  I was not disappointed.

With a blend of serious information for the newly diagnosed so newly diagnosed) and self-deprecating humor used to illustrate her points, Jedlinski has written a very enjoyable book that belongs on every Parkie’s bookshelf.  We can all identify with some of the situations that she has found herself in as a result of living with PD.

Finally, I am in Israel for 2 weeks, mostly on vacation, but some PD related business.  There is some great research going on here which I hope to be able to share with you in my next post.

The New Mattress

We are such stuff
As dreams are made on, and our little life 
Is rounded with a sleep.
The Tempest (4.1.168-170)   William Shakespeare

A couple of months ago, a Parkie friend told me about her new Zero-Gravity bed and how wonderful it is.  Mr. Twitchy and I were ready to get a new mattress, so we decided to check out this amazing mattress that she bought.

Armed with internet research, we went to the mattress store.  Upon entering, we saw no one else in the showroom, not even the salesperson.  “Hello” we said.  “Helloooooo”.  Finally a man came out of the back room and greeted us.  “Hi, I’m Bob.  How can I help you”.  He handed us his business card, which oddly, did not have the name of the store on it, but rather a real-estate company.  Very strange.

So we checked out the different mattresses, laying on them, playing with the controls to achieve Zero-Gravity*, a concept which we are still not sure of, and finally settled on a memory foam mattress that was really comfy.  Or rather mattresses.  Since the new beds are almost all adjustable, the king size mattresses are available in what is called a split-king, so that each side can be raised and lowered separately.  You can raise the head of the bed and then the foot of the bed so that you sink into a spot where there is no pressure on your back, achieving Zero-Gravity.   Other bells and whistles included 3 different types of massage and 4 different memory buttons you can set.  This was going to be fun.  Kind of a Disneyland ride for the bedroom.

“The amount of sleep required by the average person is five minutes more.” – Wilson Mizener

Once the mattresses arrived, we discovered that no one makes sheets for the split-king bed except the company that makes the mattress.  An extra long twin is supposed to fit, but the dimensions are slightly off, so we had to order new sheet sets (you can’t buy just the fitted sheets).   With our expensive new sheets in place, we were ready to go.download.jpg

So we started playing with the mattresses.  Raise the head.  Great for reading.  Raise the legs, too, and you are supposed to be at zero gravity.  Ooooh, how comfy.  Lights out, and I slid down the bed.  I am obviously too short for this bed.   And did I say that I am a side sleeper?  Bob assured us that it worked well for side sleepers as well as those who slept on their backs.  So I turned on my side, but my body could not conform to that “V” shape while on my side.  I pulled up my knees and slid down the mattress again.

So for several weeks I played with the new mattress, trying different settings to find the right one for me.  And then, last night, I decided to keep the mattress flat.  I fell asleep reading and woke up at 5:30!  6+ hours of un-interrupted sleep!!  Woohoo!  I can’t remember the last time I slept that long.  Maybe this is going to work after all.


*The Zero Gravity Position is a term and position developed by NASA as a position for astronauts to help relieve stress on the body while taking off into space.  So you really are not going to sleep like astronauts do in space but in the position they are seated during take off.    Zero gravity beds evenly distribute stress across the body which can help reduce pain and pressure points and result in a better nights rest.”  Eric Gissal, Lake County Bed Barn