Reaching out to the Newly Diagnosed

At least once a month, someone contacts me to talk to them, their co-worker, relative, friend or acquaintance, who was recently diagnosed with Parkinson’s Disease.   I always try to find time to talk to the newly diagnosed because it is so important for them to connect with someone who has Parkinson’s as soon as possible.  I am not a psychologist or a social worker, but I have lived with PD for almost 10 years. As a result, I have a different perspective to bring to the table.   It makes such a difference to speak to someone  who has been living with the disease, who can understand what you are going through and help guide you through the labyrinth of PD terms, treatments, and more.  But most of all it helps to see someone who is thriving in spite of the disease.  Most people have never met anyone who is living well with PD, so they are scared about the future, the great unknown looming before them.  It can be so overwhelming.  I wish there had been someone for me to talk to when I was newly diagnosed.   Instead, I had to rely on the information I could find through books and the internet.  And not all of that is very reliable.

PeanutsLucyDoctorSo how much did you actually hear after the doctor said those three little words:  “You have Parkinson’s”?  If you are like most people, you did not hear anything else for the rest of your appointment.  Your doctor hands you a prescription and maybe something from the Fox Foundation to read, and says come back in three months.  You get home and you have no clue what the future has in store for you.   The three months until your next visit can seem like years when you finally start thinking clearly enought to realize you have so many unanswered questions.  This is the time when having a patient mentor to talk to is so important.

A patient mentor can help you ask the right questions on your next visit to the doctor. They can empathize with you because they have been there too.  Often, a newly diagnosed Parkie is much more comfortable speaking to another Parkie than their doctor.  The patient mentor can suggest strategies that make life easier.  And they can help make suggestions for what to ask at that next appointment with the doctor.

I met with someone yesterday who was diagnosed a few weeks ago.  I have actually known this woman for years, and know about the back problems that she has had.  She started asking questions about medication, exercise, anxiety, what to expect, what resources are available to her.  Her doctor said to exercise, but did not give her specific instructions about how much and what type.  We talked about what would interest her and I was able to give her some options that would work, all the while thinking about her limitations because of her back.  We then discussed the need for her to contact her doctor before her next appointment in two months.   She has a lot of questions for him, but was afraid to call now.   I suggested that she either call him or email her questions to him now, because she really needed the answers sooner rather than later.  Like many patients, she was intimidated by her doctor, and was afraid to ask for help when she really needs  it.  For a newly diagnosed Parkie, this can only increase the anxiety that the diagnosis itself brings to the picture.  It is important to remember that this is a doctor whom you will have a long term relationship with, so you need to be comfortable reaching out to your doctor between appointments.

I know that some communities have a network of Patient Mentors for the newly diagnosed to reach out to.  If you don’t know who to turn to, ask your doctor if she can have someone get in touch with you.   If she cannot help you, reach out to a local support group leader or a national PD organization.  Many of the Parkinson’s organizations now have a  Patient Ambassador program and can refer you to someone who can speak to you.  You don’t have to go through this alone.  We are all there to help each other on this journey we call Parkinson’s.

 

Don’t forget to write your message of hope to be included in the Soaring With Hope for PD project which will be displayed at the WPC in Kyoto next year. Click this link and enter your country and message.  And make sure you click on my name for the Blogger’s Challenge.  Go to last week’s post for more information.

 

 

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!

     

    uniteforparkinsons_animation

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.