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.

 

 

The World Parkinson Congress is just a little over a year away

At the WPC you can meet advocates from around the world.  Learn from them.  Be inspired by them.  Come away with life long friends.

Jean Burns

It is time to start thinking about going to the next World Parkinson Congress in June 2019.  As an official blogger for the WPC, I have been involved in meetings and planning for over a year now and have much to share with you.

First, if you have never attended the WPC, I can guarantee that you have never attended a meeting like this.  People with Parkinson’s (PwPs) can attend any session they are interested in,, from the most technical scientific presentations, to chair yoga, meditation, sessions on nutrition, sex and PD, the latest Marijuana research and more.  Everyone has an opportunity to contribute something to the WPC, there are song competitions, video competitions for pros and amateurs.  You can even submit an abstract or poster for consideration in the Poster Display as a PwP.

There are also opportunities to volunteer at the Congress.   You can spend a few hours volunteering on-site, or apply to become a Delegate Leader to work with the thumb_20170228_124918_21962.jpgWPC to coordinate a group of people interested in attending the Congress from your area.  There are travel funds available for those who need them, to go to Japan.  Sales of Parkie the Raccoon and other items benefit the travel grant program.  For more information on the WPC 2019 click here

I like to call Soaring with Hope for PD our “Ice Bucket Challenge” for PD awareness

So what can you do now to get involved?  Participate in a world-wide effort to bring together People with Parkinson’s, their care partners, health care professionals, etc., to create an art installation for the WPC titled Soaring With Hope for PD.  Three friends of mine from Southern California, Naomi, Clara and Amy, have created an amazing project, which I like to call our “ice-bucket challenge” for Parkinson’s Awareness.

To spread the word about Parkinson’s Awareness, the official WPC Bloggers are in a challenge to collect your messages of hope for the WPC.  We want to collect a total 10,000 messages, each of which will be printed onto a hand-folded origami crane. The 10,000 cranes with messages will be displayed as a magnificent art installation at the June 2019 WPC in Kyoto, Japan. All you need to do is click this link and enter your country and message.  If you have multiple messages, you can click and enter each message separately.   And make sure to select me as your BLOGGER.  The deadline for the challenge is July 31, 2018.

 Thank you for your messages of HOPE, raising awareness for PD globally, and for helping me with this wonderful challenge.

 

I will be sending out more information about the World Parkinson Congress as it becomes available.  I hope to see you next year in Kyoto!  Arigato!

 

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Buyer Beware – the Snake Oil Salesmen are Back

Letter from Mark Twain to a snake oil peddler: “You, sir, are the scion of an ancestral procession of idiots stretching back to the Missing Link”

1905

Did you know that the latest snake oil salesman is lurking in your computer?  Yes, they are baaaaaack.  Buyer beware.

About every 2 months, I get a comment on my blog from someone claiming their mother/sister/brother with Parkinson’s was cured by a “miracle product” that was made especially for Parkinson’s.  In fact, 3 have been identical except for the name of the person making the comment.  An herbal company in South Africa or Europe or somewhere else is offering this miracle drug.  Of course it is not a miracle drug and they will charge you an exhorbitant price for it, which you will be happy to pay if you believe their hype.  If you go to the company’s website, you will see that the same “cure” is offered for any number of conditions, not just PD.  Others post “cures” or products in Parkinson’s Facebook groups that are dubious at best.  But they get wide distribution this way and can reach out to Parkies who are desperate to make their situation improve, without real “drugs” of course, because by taking those drugs they are admitting that they are “sick”.

So how do you know what is real and what is snake oil?

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First, ask your Movement Disorders Specialist or Neurologist if they have heard of this product.  If they don’t know about it, ask your pharmacist.  They can look at the ingredients and give you a better idea about whether the product is legitimate or not.

Often these “cures” are just a combination of supplements that you may already be taking, but because they are packaged together as a “cure” the company will charge 3-4 times what you would pay at the local drugstore when buying the individual products.  Then there is the issue of the quality of the ingredients.  With any supplement that you take, you need to be aware that the actual amount of the calcium, B12, Co-Q10, etc. can very widely from brand to brand.  Again, check with your doctor or pharmacist about the quality of the supplements.  They can hopefully steer you towards the more reliable brands.

A Quick Google search turned up several websites that you can check for recommended brands.  The three that seemed most reliable are  Consumer Labs,  Labdoor  and Quality Supplements

And then there is also the question of toxicity and interactions with the Parkinson’s drugs that you are already taking.  Before taking any supplement, read warning labels about interactions and if there is any question, check with your doctor or pharmacist to make sure that it is safe to take with your PD drugs.  The last thing you want to do is end up in the hospital from a bad reaction.

The bottom line is this.  Don’t fall for anything that promises you a cure.  There are NO known cures for Parkinson’s at this time.  Be critical about what you read.  Ask questions and most of all, be aware that someone is trying to make some money off of your misfortune.  The snake oil salesmen have been around for thousands of years and unfortunately, are not going away any time soon.

 

 

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?!