How much time do you really spend going to doctors?

Experience says to make your appointment so you’re the first one on the schedule in the morning or the first after their lunch hour.

Tom Sheppard

Do you ever feel like all you do is go to doctor’s appointments?  Feel like a drug addict as you take meds all day long ?   Make sure you are getting your daily dose of exercise? Sometimes it seems that there is no time left in your days to do anything else.

The other day I read a blog post on the Davis Phinney Foundation website by Tom Sheppard about making the most of your visits to your doctor.  Tom does a wonderful job outlining 5 steps you can take maximize your 15 minutes with your doctor.   As I read his list of doctors appointments in one year, I started to think about how much time I spend on doctors appointments and self-care.  You can easily fill your days with unwanted tasks, all in the pursuit of living well with PD.

I knew I was seeing a lot of doctors, but when I actually looked at my calendar, I realized that I had more appointments than I thought I did. To sum up, in 2017 I saw

  1. 25 doctors
  2. 36 appointments
  3. 9 Physical Therapy appointments,
  4. 2 procedures
  5. 2 MRI’s,  and other miscellaneous appointments.

We also traveled a lot, for a total of 17 weeks.  Which means that I saw at least one doctor a week when I was home.  It seems a bit excessive, doesn’t it?

Self care also includes exercise, which is essential, averaging an hour a day.  In addition, we need to make sure that we have all of the  medications that we take throughout the day, keep up with our health insurance claims and more.  Record keeping is also an essential part of self care.  The bottom line it that we spend a lot of time managing our own care.  You must be an advocate for yourself to get the care you need.  If you don’t have someone to help you, it is easy to become overwhelmed.

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On a different topic, I don’t normally like to endorse products on my blog.  But after a friend fell and ended up in the emergency room and no one there was familiar with her PD meds, I both decided it was time to get a medical ID bracelet.  I found a great selection of fashionable ID bracelets on a website called Lauren’s Hope.  I get a lot of compliments on my new “bracelet”.   Check out their website by clicking on the photo here:

Medical ID Bracelet

What does it feel like to have Parkinsons? Part 2

#worldparkinsonsday

In honor of James Parkinson’s birthday and #WorldParkinsonsDay today, I want to share the rest of the stories from my Parkie friends. My intent when I asked them to describe how it feels to have PD was to have them describe the physical manifestations of Parkinsons. However, many of them stressed the emotional and cognitive issues that are also part of the package of issues that come with the disease. These range from apathy, fatigue, social isolation, denial, lack of confidence and more. But the one thing that underlies every one of the stories is a feeling of hope and appreciation for the good things in their lives. Everyone is grateful for the things that they can still do, in spite of PD. That is what keeps us going.

Mike, Los Angeles

Knowing that I have PD makes me feel like there is a risk that my friends might define me by my disease and that could become a focal point of our relationship — something I do not want. Consequently I try to avoid thinking about it and just proceed with life as it comes along. Periodically I am reminded of my physical limitations and then it feels frustrating to have PD since my mind thinks I can do something but I am unable to accomplish it.

Marcy, Los Angeles

When I was first was diagnosed with Parkinson’s I was relieved. After all I had been told by five neurologists I was just a 50 year old women, who had to realize she was getting older, and was at that time of life! I was winding down my career of 17 years, and my last child had gone to college. They felt that was the reason for my anxiety, my shaking, my depression. The Doctors each gave me a prescription for Xanax. The sixth gave me Sinemet which changed my life,  I wasn’t  really worried  about Parkinson’s. I had always been an athlete so I felt I was invincible. As the years went by I had to start upping my medication because I lost my fine motor skills. Then my leg started doing figure eights. So a pill for that and then, a pill to control my constant nausea from the increasing pills, and several pills to combat my constant anxiety and depression. It affects us all so differently. So how does it feel to have Parkinson’s? Every is a new day.  I am grateful for the symptoms I don’t have.  Annoyed, very annoyed, every time I get a new one. I am happy with the smaller things in life, family, and a small group of friends. I am single so the PD certainly stopped my dating. Who wants to tell someone that you have PD, not very sexy! What I am trying to say is it changed my life immensely, but I am certainly more grateful for what I have on a daily basis.

Clara, Pasadena, CA

It’s an on again off again love affair. I absolutely love it when it’s off and get frustrated sometimes when it’s on. What’s the affair? Parkinson’s. The off for me is when I wake up in the morning get out of bed and forget to take my medication. The slight tremor in my left hand or shaking in my right leg begins,  just to remind me that I do have Parkinson’s and I need to take care of it. The tremor is only part of the bigger picture. I’m finding Pd works away at your self-confidence  slowly but surely. As I’m doing things a little bit slower now, and others want things done faster and faster, I’ve noticed the erosion of my confidence in being able to do things well and fast. Argh. Basically I ignore the tremors and focus on what I can do. It’s now a part of me. There are moments when I don’t tremor and think hey what’s missing?!

It’s Parkinson’s Awareness Month, but you already knew that

It’s April, which means you are going to be hearing a lot about Parkinson’s Awareness Month.  If you read any other blogs or PD newsletters, you have already been inundated with information.  There is a lot happening this month, with many events being planned around the April 11 birthday of James Parkinson.   His groundbreaking paper, “The Shaking Palsy”, was published in 1817 and has long been considered the foundational text of the disease.

So the good news is that we Parkies are all getting the info about Parkinson’s.  The bad news is that the outside non-Parkie world is still clueless.  So here we are, 201 years after Parkinson’s essay and most of the world and many Parkies believe that there is nothing that can be done to improve our outcome.  And many still think of an old man bent over, shuffling and trembling when they hear the words Parkinson’s Disease.  So it is our job to change that perception.  We may not yet have a cure, but scientists and researchers seem to be getting close.  There are many new theories about what causes Parkinson’s that are very promising, and one of them might just lead to a treatment that could be a cure.  As people with Parkinson’s, we must demand the best treatments available to improve the quality of our lives.  And to do that, we must be educated consumers.

Here are a few things that you can do this month to learn more about Parkinson’s and to raise Parkinson’s awareness.   I tried to include a few new things that you may not already have read about.

 

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I #uniteforParkinsons because I want to play with my grandchildren
  • Join the #UniteforParkinsons campaign. This campaign was originated in England with Parkinson’s UK and the European Parkinson’s Disease Association (EPDA), but is now a global campaign.  Post a photo or video of you on social media with a sign with the words I #UniteforParkinson’s because ……. (you fill in the blanks)  Please post them on the Twitchy Woman Facebook page  as well as your own FB page, Twitter, or whatever social media you are using these days.  Let’s see how many we can get this month on Twitchy Woman! There is also a guide for the campaign which has many ideas that you can use.  Share your story and inspire others.

 

  • Participate in a local walk.  The Parkinson’s Unity Walk takes place in NY on April 28.  There are many other walks, runs and other activities going on around the country.  Check with your local organizations to see what is happening in your area.

 

  • This one I just heard about and it sounds fascinating.  Log onto INSIGHT 2018, Wednesday 11th to Friday 13th April for World Parkinson’s Day.  Join the first online World Summit and discover how to live your best life possible – because of and in spite of Parkinson’s.  Connect with experts, academics, specialists, clinicians and people living with Parkinson’s who are trying to live their best life possible.

  • Become a Patient Advocate for any of the Parkinson’s organizations.  They will train you to reach out to elected officials, speak at public engagements and more. Another interesting concept is the formation of Patient Advisory Boards for pharmaceuticals and other companies.  They want to hear from us about what we want to treat our Parkinson’s and see us as part of the team from start to finish in developing new drugs, clinical trials, etc.

     

     

  • In Los Angeles, where I live, the Parkinson’s Community LA is having an event titled “Living Artistically with Parkinson’s” featuring works by people with PD.  All pieces will be for sale by silent auction and will benefit the artists and PCLA.

     

    About 18 months ago I wrote a blog titled Breast Cancer vs. Parkinson’s in which I lamented about the fact the Parkinson’s Awareness Month was nothing compared to Breast Cancer Awareness Month.  Let’s try to change that perception together, today!

     

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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!*

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*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.

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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