What does it feel like to have Parkinsons?

Lately I switched Meds and it feels like I have brand new tires, rolling amused. A bit confused, but I’m going forward. With caution.

Matt

During a conversation with a friend the other day, he suddenly asked me what it felt like to have Parkinsons. Do I have pain? What are my symptoms besides the tremor? I had to stop and think about how I can explain why the sleepless nights from PD are different than my husband’s sleepless nights. Why some symptoms could be a function of age, but are really part of PD. Then I tried to explain what internal tremors felt like. There is so much more I could have said, but I decided to just say that each person with PD has an entirely different trajectory and that I could not speak for others.

When I got home I started thinking about the best way to approach the question of what it feels like to have PD is to ask other Parkies to tell me how it feels for them. I asked a number of my Parkie friends to answer the question. Here are some of their answers. I hope that this will give some insight into the many manifestations of PD, both physically and emotionally, whether or not you live with the disease.  As you read, you will start to see many commonalities in these statements, which I will talk about next week.

Barry, Los Angeles

It’s the strangest feeling knowing what your future is.   You can keep the disease at bay with exercise and diet, but eventually it’ll overcome you.  But the way I look at it, everybody gets something …. so I got Parkinsons.  I won’t let it define me,  not today, not tomorrow and hopefully not in the future.  At the end of the day, all we have is hope.  And that I won’t ever let Parkinson’s take that away from me.  At least I hope it won’t.

Farrel, Los Angeles

When I am feeling my symptoms which I do periodically, sometimes 3 times a day as my medication is wearing off and sometimes less, I feel more rigid. I do not have a tremor. If I happen to be walking, I feel a slight difficulty moving with the ease I feel when my meds are fully kicked in (When they are working I feel perfectly normal). I compensate by taking big, exaggerated steps with big arm movements and usually in about 20 minutes the symptoms subside. I can also feel slightly dizzy (another symptom which led to my diagnosis of PD).  This, too goes away as my medication kicks in.  Otherwise I feel very good. I have energy, I sleep reasonably well, I feel alert mentally, and I feel capable physically. Knowing that I have Parkinson’s has made me appreciate my life, and life in general. It gives me a more acute awareness of the need to be awake, present and to try to live every moment well.

Debbie, Jerusalem

For me, the lack of knowing what’s going to be in five minutes is one of the most difficult challenges. Sometimes I am so stiff that I can barely move, at other times, my voice is soft and barely audible. And yet, at other times, no one would ever dream that I have Parkinson! It’s so unpredictable! Also, my walking. I used to LOVE walking, and literally raced through the streets of Jerusalem. Today, although sometimes I can walk normally, albeit slowly, at other times I literally crawl, and because I must often think about my steps, i no longer find walking a pleasurable activity. I feel as though I am losing part of myself, slowly, and not consistently, and that is, most probably, the most difficult challenge of all.

Karyn, Melbourne, Australia

I am one of the rare people who was diagnosed on the spot, one day after I noticed that something was wrong. That neurologist was brave to diagnose a young 44 year old female presenting with no tremor. That was 15 years ago. Since then, my life has actually improved.
I had successful DBS 6 and 1/2 years ago, which gave me back my independence.  I have been lucky enough to afford to give up work and travel around The World, often incorporating seminars, Walks and Congresses on Parkinson’s.
But how do I feel at this present stage?  I am becoming more and more unbalanced every day.  I stumble a lot in the mornings, banging into walls to stop myself.  But I am an optimist.  I still ride my bike once a week along beautiful St Kilda Beach, I still drive, and have 2 overseas trips planned, including fulfilling my role as an Ambassador to The WPC in Kyoto, Japan next year.  I have a very supportive husband, family and friends, and I am very active in my local Parkinson’s community, residing on The Board.  I may be slowing down, but life for me is still good.

 

Naomi, Los Angeles

What Parkinson’s feels like for me:  When I get out of bed I can barely walk.  I hold onto the tables and the wall to just make it to the bathroom without falling . I take my meds and hopefully they will kick sooner than later. But until they do,  I shuffle my steps and don’t lift my feet very high. I experience rigidity when I move.  This feels like someone is pushing me backwards when I am trying to go forward. When I walk,  my toes on my left foot begin to curl which is very painful. And if I forget to take my meds in the middle of the day, my gait becomes very bad and I get a lot of pain in my Achilles heel on my left side. Everything that I play or need to do always takes longer. But everyday I feel blessed to be here and thankful for my wonderful family and friends. I have good and bad days. I even have good and bad hours in a day. But I get up and do my best to live now and make the most out of it.

Matt, Los Angeles

Since I’m relatively a rookie in this process I feel like there are so many curves ahead in the road, it’s foggy and my car has no bright lights. I feel strangely at ease from the comfort of the car. But I’m just not sure where I’m headed to. It’s been 5 years now and I’ve been  waiting for  my first major calamity. So far I’ve only taken one fall as an official Parkinsons patient. Helping my daughter pack up from college I took a fall at the front door. She didn’t see me fall, which was important to me since I fancy myself her own personal bodyguard. Lately I switched Meds and it feels like I have brand new tires, rolling amused. A bit confused, but I’m going forward. With caution.

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© 2015 Peter Dunlap-Shohl           Off and On: The Alaska Parkinson’s Rag

More on this next week.

 

Today, in the “some bloggers think alike” department:  blogger Sherri Woodbridge posted an article in Parkinson’s News Today on the same topic titled:        I have Parkinson’s Disease and This is How it Affects Me (Part 1)

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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The Global Community of Parkinson’s

This blog post was originally written for the WPC Blog, March 26, 2018

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One of the great things about the Parkinson’s Community is that it is truly global.  There is research going on in many different countries, often with researchers from more than one country collaborating on a project.  As a result, in the last few years there have been many new theories about what causes PD and how to treat it.  Trying to keep up with the latest “breakthrough just about ready to happen” can be daunting.  But we are getting closer, maybe even to the point where we can reverse some of the damage in our braincells.

On another level, Parkies around the world have connected through the internet in a way that that no one could have imagined 20 years ago.  The many Facebook groups provide forums for us to get to know one another, share experiences good and bad, learn about promising new treatments, participate in clinical studies, problem solve and more.  Blogs have allowed many of us to express how we feel and explore new theories about treatment and care.  We have become more well-informed patients, ready to make the most of our appointments with our Movement Disorder Specialist (MDS).   We know about the research going on in other countries and about different treatments that may not be offered in our home towns.  There are many people that I have met through my blog and the various FB groups that I can truly call friends and I look forward to seeing them next year in Kyoto.

For the last two weeks, I have been traveling around Israel and have had the privilege to meet several individuals who, because of this global community, are truly making a difference for those of us with Parkinson’s Disease.

On a cold, rainy night in Jerusalem, Debbie Shapiro came to meet me at my hotel.  What Debbie has accomplished in the last 18 months since she attended the WPC in Portland with Dr. Tanya Gurevitch (see below), is amazing. Debbie, a mother of 9 originally from San Francisco who has PD, came home determined to start a program for Persons with Parkinson’s (PwP’s) in Jerusalem. Tikvah4Parkinson, (Tikvah means Hope) provides exercise programs, boxing, support groups, etc. for  PwP’s.  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.  Because of her passion for this project, the people attending her programs are all showing improvement in their symptoms and their outlook on life.

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Prof Tamir Ben-Hur, chair Neurology and Dr. David Arkadir, Hadassah Medical Center

The next day I met with Dr. David Arkadir at Hadassah Ein Karem Medical Center. Dr. Arkadir is the top Parkinson’s researcher at Hadassah and is on the board of Tikvah 4 Parkinson.  He told me about several research projects that he is working on now. The first is a double-blind study testing the artificial sweetener Mannitol.  Earlier studies with animal models have shown that it prevents alpha-synuclein from accumulating and even removing it from the brain.  Dozens of patients had already reported benefits while taking it, so Hadassah applied for a grant from the Israeli Ministry of Science to investigate this further to confirm previous anecdotal stories of the benefits of Mannitol.

A second study is just getting underway to look for new genes related to PD, mostly looking at young onset patients who have relatives with PD.  They have already found a few candidate genes.  Another study is looking at guided physical therapy, collaborating with a company that developed user-friendly therapy that can be done at home combined with cognitive therapy.

One anecdote.  When I told Dr. Arkadir that I thought many Parkies do too much, and that I was doing too much, he said “its good, its what keeps you well.”

Finally, I met with Dr. Tanya Gurevitch who is the director of Parkinson’s Disease and Neuroautonomic Service at the Movement Disorders Unit at Tel-Aviv Sourasky Medical Center,  a Center of Excellence for the Parkinson’s Foundation.  She is also on the board of Tikvah 4 Parkinson.  According to Dr. Gurevitch, the clinic sees about 2000 patients from all over the country.  They look at PD from all sides, not just as a movement disorder but as a multi-factorial and multi-symptom disease, which also affects the entire family.   They offer a multidisciplinary approach for patients who live in the Tel Aviv area, which includes physical therapy, occupational therapy, speech therapy, dance, and more.  Dr. Gurevitch says there are no unimportant symptoms and encourages her patients to report everything.  The department provides workshops for the newly diagnosed and their care partners are encouraged to attend with them.  They are doing a lot by phone with patients outside of Tel Aviv area, in between their visits to the center  3-4 times a year.  She agreed with Debbie Shapiro about the prevalent thinking in Israel that you only have 5 years after your Parkinson’s diagnosis.  They are working to change that perception, encouraging more exercise along with medication to improve quality of life.  People don’t want to exercise, but if they are told it is their medicine, they are more likely to do it.

In addition,  the center was beginning a study for people with the GBA gene mutation.  GBA is found predominantly in Ashkenazi Jews, making Israel a logical place to be one of the test sites chosen because of its large Ashkenazi population.    This international study will be looking for a disease modifying treatment for people with the gene mutation.

Treatment is Global and Research is Global

Dr. Gurevitch stated that “Treatment is Global and Research is Global.”  For example,  she just published a paper on the validation of the Hebrew version of the UPDS scale.  The 50th patient was just recruited to participate in a study to validate the new European (EPDA) scale, which is only18 questions compared to the US version which has more than 50.

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Tel-Aviv Sourasky’s Movement Disorders Unit is a  Parkinson Foundation Center of Excellence

I asked why she specialized in PD.  Dr. Gurevitch said that for her “it is real neurology, because you look at the symptoms, you can diagnosis it because of your education and knowledge, not an MRI or some other test, and you can use your creativity and the art of the treatment to find the special thing for the special patient.  Parkinson’s is a grateful disease, and if you are treating it good, it will be good.”

To see a video about Tivkah4Parkinson, click here.

The Return of the Hot Flashes

I’m having a hot flash
A tropical hot flash
My personal summer is really a bummer

Lyrics from “Heatwave”, featured in “Menopause the Musical”

The non-motor symptoms of Parkinson’s can be the most frustrating at times.  A couple of weeks ago, as I was scratching my head, I read the latest post by Darcy Blake about her battle with an itchy scalp.  Her dermatologist told her that there is association of seborrheic dermatitis (term for dry, itchy scalp) with Parkinson’s Disease.  Not a surprise, as I continued to scratch my itchy scalp.  I had been diagnosed with the same thing a few weeks ago.

Another symptom that caught me by surprise was the reappearance of hot flashes, which are apparently related to the above skin changes (according to the Parkinson’s Founddeovergang-vrouwenation and other websites).  I thought that hot flashes were way behind me, but once again, I find I am having my own “personal summer”.  But it is different this time.  Instead of the feeling of heat spreading throughout my body and needing to strip down to the bare minimum, while sweating profusely no matter how cold it is,  I just feel hot.  It can last for a minute or more and then just goes away.  There is a name for this:   hyperhidrosis.  It can happen to me after a glass of wine, but it also occurs with no warning at any time during the day or night.  My cheeks turn red and I look like I have been drinking.  I used to be the one in our house who was always cold.  Not anymore.  When we go out, I often wear layers, with a sweater or a scarf that can easily be removed when the heat rises.  Turtlenecks are definitely a no-no.  Many people report that they also sweat with the hot flashes.  So far, I have been lucky enough to escape that.

So how long is this round of hot flashes going to last?  Does anyone out there know?   And what other skin problems can I expect in the near future?  In the meantime I will have to go dig out the fan I used the last go-round and try to cool off.

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!