An American Ninja PD Warrior

 

Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.   Jimmy Choi

I am not a fan of Reality TV.  The closest I came was when my daughter was designing clothes and we watched Project Runway together for several years.  At some point, we both became bored with it and stopped watching.  Every season, every episode followed the same formula.  I have watched Top Chef a few times, mostly on airplanes when there is nothing else of interest, and guess what, it followed the same exact formula, just substituting chefs for fashion designers.   Nothing original in these shows.   Is there a difference between “The Voice” and “America’s Got Talent”?  I could not tell you, except that Simon Cowell seems to be everywhere.

Tonite, I watched American Ninja Warrior (ANW) for the first time because of Jimmy Choi.  If not for him, I probably would have avoided it completely.  I am sure that so many others with Parkinson’s watched for the first time, too.  Jimmy Choi’s second appearance on ANW was a reason for us to come together and celebrate.Image may contain: 1 person, outdoor

So who is Jimmy Choi?  An inspiring father of two who was diagnosed with Parkinson’s Disease at age 27.  One day he came across a magazine article about a person with PD who was running a marathon.  That article motivated Jimmy, who by that time had gained significant weight and was walking with a cane, to run a 5K race.  Then a 10K race, 1/2 marathon and eventually full marathons.  It literally changed his life.  He lost weight and his PD symptoms became less severe.  Jimmy became an inspiring model of the positive benefits of exercise for a person with PD.  All of this led him to become a spokesperson for the Michael J Fox Foundation.

Tonight, he is appearing for the second time on American Ninja Warrior in an effort to spotlight the need for a cure for Parkinson’s.  Last season he made it to the regional trials in Kansas City, but fell in the middle of the course and could not complete it.  Jimmy was a fan favorite, and was brought back by ANW to try again this year.

We watched, cheering him on through the first two obstacles, watching his tremor become more visible as he became more stressed by the tasks at hand.  At the end of the third obstacle, it became clear that his tremor and weakend grasp were going to win this time.  As he said “Once I restarted my swing and made my final reach, I knew all I had to do was make that last swing. This is when Mr. PD showed up though.”  Jimmy fell into the water as he tried so hard to reach that last ring.  We felt like we were falling into the water with him.

The thing that most impressed me was how hard Jimmy worked, inspite of having PD, to get to this point.  He had a mission – to stop making excuses and take control of his life when things were not going well.  As he reached eached milestone, 5k, 10k, etc, he set new goals.  He was not content with staying in one place.  He had to keep working harder and harder, eventually becoming our American Ninja PD Warrior.

Jimmy did not fail last night.   He inspired so many others watching him to get moving, to improve their lives while living with Parkinson’s.  And for that, we thank you Jimmy.

 

 

The California Parkinson’s Disease Registry and other things

First, I want to thank all of you who expressed concern after my blog post last week.  It was a very stressful week which definitely had an effect on how I felt.  I saw my Movement Disorders Specialist on Thursday and she assured me that downloadI am doing ok, I just need to get more sleep and reduce my stress levels.  She suggested meditation, which I have tried before, but never seemed to get into it.  I will try again and hopefully will be more successful.

The California Parkinson’s Disease Registry

Beginning July 1, 2018, a new California Parkinson’s Disease Registry (CPDR) will be implemented.   The California Health and Safety Code (HSC) 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinson’s disease patients to report each case of Parkinson’s disease to California Department of Public Health.   It will be a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinson’s disease.

From the CPDR website:  “Surprisingly, little is known about how Parkinson’s disease is distributed among different population groups and whether the patterns of disease are changing over time.  California’s large and diverse population makes it ideal for providing important information about this disease.  CPDR will expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.”

Why do we need Parkinson’s Registries?

When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. According to the Parkinson’s Foundation, this information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease  Currently, the National Institute of Health (NIH) has no firm numbers for the incidence of PD in the United States, which has been estimated to be about 500,000- 600,000.  The last major PD prevalence study was completed 40 years ago in 1978.  Because the risk for PD rises with age, the number of people with Parkinson’s is expected to increase dramatically as the Baby Boomer population ages,  The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

What the Registry does NOT do:

  • Disclose individual patient information
  • Report you to the DMV
  • Jeopardize your current or future medical care

A quick search on the internet showed that only a few other states currently have Parkinson’s Disease Registries, including Nebraska, Utah and Washington.   More states need to create PD Registries soon, so that they can plan for the increase in services and resources needed for treating PD as the population ages.  If your state does not have a registry, contact the Michael J Fox Foundation or the Parkinson’s Foundation to find out about lobbying your state legislators to create one.

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There are a growing number of best Parkinson’s Diseases blog lists popping up on the internet.  The latest one is  from Everyday Health, an online Health magazine.  The list consists of 10 blogs that they call “truthful and inspiring.”  I am proud to be one of the ten and congratulate the other bloggers chosen.   There are many very good blogs out there, so if your favorite is not on this list, it may be on another.

Time for a change

The last few weeks have flown by.  As I wrote last week, a dear friend passed away after a very brief (5 weeks) illness that left us stunned and numb.  Mr. Twitchy and I got home from visiting her in Arizona on Monday, and left again on Thursday for a wedding in Richmond, VA, and then to Chicago on Sunday to visit our grandchildren there.  Home in LA the following Thursday and thankfully had the chance to hug our one-month old granddaughter as soon as we arrived.  That was definitely just what the we needed since we were off to Phoenix again on Saturday for the memorial service on Sunday.  Looking forward to being home all summer, and staying off of airplanes.

Trying to keep it all together has been a challenge.  Wacky schedules. On and off planes and long drives.  Not enough sleep or exercise.  Meals, good and bad, and not necessarily nutritious.  This is not a good thing for anyone, much less those of us with chronic illnesses.   We are both exhausted.  So of course, my tremor has come back at inopportune moments.   Fortunately that is the worst of my symptoms, but the fact that it has come back again  to some degree is very disconcerting.  I was hoping that I could continue doing well for years.  I have to get back on track with exercise, which seems to bring more benefit than anything else.

When speaking to my therapist last month about the return of some symptoms after 41/2 blissful years on Sinimet, I said I felt like I was falling off a cliff.  He described it differently, that it has actually been a slow change, but suddenly enough of a change to be noticeable.  Kind of like when the PD symptoms first showed up 10 years ago. Whatever it is, I don’t like it.

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Don’t fall off the cliff!

So it is time to do something about it.  Fortunately, several other big commitments have come to an end and I no longer have those stressors.  I need to look at my diet and make positive changes, increase my exercise – both the amount and intensity, and find ways to relax that do not include playing games on my phone.  I have done it before, so I can do it again.   Maybe I will even try to be a PD Warrior!  Anyone want to join me?

We should be thankful for what we DO have

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.”   — Marcus Aurelius

It has been a tough week.  Mr. Twitchy and I lost a dear friend.  Younger than us.  Vibrant. Active. Beautiful.  Smart.  Talented.  Multi-talented.

Just two months ago, we saw her perform the lead role in a play in the Phoenix area that she also produced and directed.  She was awesome.  At the time, we noticed she had a little cough, but so do we all from time to time.  A few weeks later she started feeling some pain in her stomach, and was having moderate problems breathing.  Her doctor did her blood work and, while not perfect, there was nothing alarming.  She was scheduled to see him again in about a month.

Then she and her husband, a friend of almost 40 years, took a trip to California.  We were supposed to see them but they had to cancel.  Her abdominal pains and breathing issues had become so severe that they cut their trip short and went back to her doctor.  He put her in the hospital immediately.  Within days she was diagnosed with a particularly nasty and aggressive form of lymphoma.  In another 10 or so days, the lymphoma had won.  She went on hospice care this past Monday and passed away Wednesday morning – about 4 weeks from feeling mostly normal to being gone.

For some of us Parkies, our disease is truly disabling and life altering.  For others of us – myself included – the disease is mostly just an annoyance.  But whatever our individual level, it can be easy to fall into the woe-is-me trap, because we know we will never be fully “normal.”   We just have to be better and stronger than that.  We must focus on the quality of life we still have and can enjoy, rather than focusing on our regrets of what we no longer have.

Regular readers will remember that I have previously written that it is ok to have the occasional pity-party and cry if you want to over the portions of our selves that we have lost.  Just don’t make it a habit. We have to pick ourselves up and return to fighting as hard as we can to maintain as much quality of life as we can.

As much as anything, that is what this week’s loss has snapped so clearly back into focus.  It should not take the loss of a loved one to remind us that, while we deal with our limitations and while we still hope for a cure, we can never stop the fight to continue to live lives that are as fulfilling – and as joy-filled – as possible.

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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.