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

Flying the Friendly Skies

Traveling with Parkinson’s Disease can be stressful.  My husband and I have traveled so much in the last few years, that we have learned how to make getting through airport security and onto the plane as stress free as possible.  Yesterday morning, we left for Washington DC on a United flight from Los Angeles.  The flight was fairly uneventful, although a bit bumpy, until about half way through the flight.  I was exhausted, having not slept well the night before, and was trying to rest.  At some point I became aware of the flight attendants talking to the man sitting in the seat directly behind me.  Apparently he was dizzy and not feeling well and they, along with his wife, were trying to determine what the problem was.  About an hour later, they were back since he was not doing well at all.

A passenger, who was a registered nurse, came to help and worked with the flight attendants, taking charge gently, to check the man’s blood pressure and his blood sugar levels.  When asked about his medical history and medications, his wife handed over a huge amount of medications that he was taking for his heart, for chemo and other things.
Someone brought him some orange juice to help stabilize his blood sugar levels and the flight attendants gently laid him down on the floor in the aisle so that they could monitor his blood pressure and heart rate.  Another passenger who was a doctor, also came to help.  They brought over a defibrillator, which, fortunately they did not have to use.  The pilot radioed for the paramedics to be at the gate when we landed. A bonus, our plane was given priority for landing and getting to the gate quickly.  In the meantime, the flight attendants stayed with the man on the floor of the plane, gently reassuring him and helping him to relax, until we landed and the paramedics came on board.

flight-attendant-on-sat-phone-with-medlink_0.jpgThe airline personal were calm and very professional.  It was clear that they have been trained well to deal with medical emergencies.  An announcement was made shortly before landing that the paramedics were coming onto the plane as soon as we reached the gate, so no one should leave their seats until after the man was taken off the plane.  It was amazing.  No pushing or shoving.  Everyone waited until we were given the OK to get off the plane.

Living with Parkinson’s, as I do,  or any chronic disease, can make traveling stressful.  Watching how the flight attendants are prepared for these kinds of emergencies certainly made me realize that we can be well taken care of at 35,000 feet.  But one important lesson comes out of this incident.  When you are traveling, ALWAYS have your medications in your carry-on bag.  Using your smart phone, you can keep your entire medical history easily accessible if something should happen to you while traveling.  I keep a list of my medications, health problems, allergies and any other important information in Apple Health on my iPhone.  And if you are traveling with someone, make sure that they are aware of your health problems and where they can get the information needed if something should happen while on your flight.

I hope that the gentleman in seat 12B is feeling better.  And I want to thank everyone on Flight 67 who took care of him at 35,000 feet.  You give new meaning to Flying the Friendly Skies.

Its a Meltdown Day

There is a song from the 60’s that keeps going through my head:  “It’s a Turn Down Day ” by The Cyrkle.   I have no idea what a Turn Down day is, but the lyrics I keep hearing are “its a Meltdown Day…….”  

Last Tuesday I flew to Chicago to visit my daughter and her family.  We had a wonderful couple of days together.  On Friday I left to fly to Florida to go to meetings for the next few days.   Getting through the airport security was easy.    We boarded on time and we were ready to go when the pilot announced that the wings needed to be de-iced, so we would leave in about 20 minutes.   Due to a series of delays, we sat on the Tarmac for over 2 hours before we finally took off.    Since I am used to traveling alone, I was fine.  I met friends for dinner at someone’s home,  2 hours late, but that was ok.  I stayed with a friend, relaxed on Saturday and then headed out to the hotel for my meetings.

But, sometimes I forget that I have PD because my meds work so well,  so I didn’t see the warning signs.   I got to the hotel Saturday night for a dinner meeting and then started at 8 am the next morning with meetings all day.  By the time I went out to dinner, I didn’t know what hit me.   As my husband says, I was “melting”.  Because of the time changes, my timing on my meds was off and I just fell apart.   Outwardly I was fine, but it was the internal “tremors” that did me in.  It’s that feeling that you just can’t get comfortable and you just want to jump out of your skin.  If my friends noticed anything, they were kind enough not to say anything.    Eventually my next dose of sinimet kicked in and I recovered from the meltdown.

It seems that there is a pattern when I travel.    I am usually fine the first few days, no matter what the time difference.   Usually there is a day where I just fall apart physically because I have pushed myself too hard.   Those are the PD days where I should probably just stay in bed with a good book and a cup of tea.   It’s hard to do when you have a full schedule for the day.   When I am at home, my days are never as busy as when I am traveling, and I have a regular routine so I usually don’t experience the total meltdown.

Maybe I will learn to move at a slower pace at some point.  As long as I feel good, the temptation to keep on moving  at what was once my normal pace is hard to resist.  So, for now, I will just have to keep watching for the warning signs and learn when to take the much needed break.