Desperately Seeking the Right Information

Without getting too bogged down with real “statistics,” a typical diagnosis of Parkinson’s takes 1-3 years from the onset of symptons.  At that point, the doctor often provides a prescription,  a return appointment in three months and not much else.  The newly diagnosed, probably in a state of shock,  is not only in no condition to ask questions, but has no idea where to begin looking for information

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Those of us who are patient advocates meet many other People with Parkinson’s (PwP’s) who have had exactly this experience at the time of their diagnosis; most of us have had it ourselves.  While there is currently no cure for PD, we know that (1) there are a host of things PwP can do to continue to live well, and (2) the sooner thePwP learns of these things the sooner he or she will be able to do so.   These include, among others, medication, physical therapy and exercise.  And more exercise.  And beyond that, exercise.  Did I mention exercise? Once a new PwP enters this world he will learn that there are a huge number of people who have been living with PD  for years and are living activeproductive lives while simultaneouly fighting the progression of the disease.

 

One of the primary goals of patient advocates — one of the goals for writing this blog — is to reach out to Primary Care Physicians and Neurologists (directly or through their patients) to encourage them to ease the shock of the diagnosis and give more information to the patient at the outset and to encourage the patient to ask questions.  It would be a huge step forward if the medical community only made itself more generally aware of the already available lists of Frequently Asked Questions (FAQs) regarding Parkinson’s (see below).

An incomplete list of what patients advocates talk to each other about of things we would like to see made standard parts of the initial diagnosis includes:

1.  Making immediate referrals of patients to a Movement Disorders Specialist (MDS) (rather than to a general neurologist).   An MDS receives additional training in Parkinson’s disease and other movement disorders including dystonia, chorea, tics and tremors.  They are more knowledgeable than a general neurologist about the latest treatment options, the need for exercise and all things Parkinson’s.

2.  Providing materials from the Parkinson’s Foundation, Michael J Fox Foundation, Davis Phinney Foundation, American Parkinson’s Disease Association (APDA), local support groups or organizations, and other resources available for the patients.  These FAQs and other materials can help set the newly diagnosed on a better path to help protect and even improve their quality of life early in the process; the sooner a PwP can take action, the better off he or she will be.

3.  Scheduling a follow-up appointment within a month and encouraging the patient to bring along someone to listen and to help ask questions.

4.  Connecting the newly diagnosed PwP with a patient mentor who can talk to him/her on a personal level about living with PD.   Informally, this could be another patient in the community who is a good role model for the newly diagnosed Parkie.  In addition, several organizations have Patient Mentors (or Ambassadors) who are comfortable in this role and are happy to help.  The purpose is to meet casually and explain — and demonstrate — in a casual lay setting that the PD diagnosis is not the end of the world; it’s not even the beginning of the end of a quality life.

5.  Encouraging them, above all, to start moving.  What seems to be a universal truth is that exercise is the best medicine to combat PD.  Of course, the amount and extent of exercise will have to match the PwP’s overall health an fitness.  But that is fine tuning. An unquestionable first, or at least primary, step must be to get as active as one can as soon as one can.

Until the medical community formally embraces these standards, it is up to us in the lay community to make this information available.  NO newly diagnosed Person with Parkinson’s should be sent home with only a prescription and a return appointment 3 months later.  Given the right information and instructions, the newly diagnosed Parkie will be much more prepared much sooner for dealing with their life with Parkinson’s.

 

On a totally unrelated note, I started reading PD blogger, Tim Hague’s new book “Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”.  I am about 1/3 of the way through the book and really enjoying it.  I hope to review it in the next few weeks.

An Evening with Jimmy

No matter what you are faced with, if you make your body healthier, you are going to feel better.  Jimmy Choi

On a perfect Southern California evening a few days ago, Mr. Twitchy and I had the priviledge of hosting American Ninja/PD Warrior Jimmy Choi at our home, with the help of Alex Montaldo and Roberta Marongiu from StopPD, who co-sponsored the event. Over 30 fans with Parkinson’s came on short notice to meet Jimmy and hear about his journey from Parkinson’s diagnosis to Ninja Warrior.  They were not disappointed.

Jimmy Choi was diagnosed with PD at 27 and basically denied that he had this “old person’s disease” for 8 years, until he had a wake up call.   He stopped exercising because of the diagnosis, had gained over 50 pounds and was walking with a cane for balance.  This former athlete was not in good shape.  Parkinson’s was taking over his life.

This was definitely not the person who was sitting next to me.  The Jimmy Choi I met was musclebound, moving easily without a cane.  Confident.  Knowledgeable.  What changed his life so dramatically?

One day after he lost his balance and fell down a flight of stairs while carrying his son. He realized then that he had to do something to turn his life around.  He was becoming a danger to his family and he could not let that happen.

He started slowly, just walking,   First one block and then two, gradually increasing as his energy levels improved.  Eventually he started working out with a trainer.  He had started to educate himself about Parkinson’s and changed his diet.  Then, one day he boarded a flight for a business trip, and found a copy of Runner’s World that someone left on his seat.  There was an article in the magazine about a person with Parkinson’s running a marathon.  That was the “aha” moment that he needed.  He came home and entered his first 5K race.  Then a 10K race.  He quickly moved on to 1/2 marathons and then finally, marathons.  He has run over 100 1/2 marathons and 15 marathons since 2012.  His weight came down, he no longer needed the cane and eventually was able to reduce his meds because of all of the exercise.  His balance improved along with his gait.  He is living proof that exercise is the best medicine for PD.

All of this eventually led to his participation in American Ninja Warrior (ANW) competitions.

 

In the video of my interview with Jimmy, he tells his story and explains how he got involved in working with the Fox Foundation, (for whom he has raised over $250,000,) and ANW.  I think you will find him very inspiring and motivating.

My dear friend and PD pal, Sandy Rosenblatt came out of PD forced retirement to record and edit  this video which shows how amazing and inspiring Jimmy is.

 

Following Jimmy’s talk, we participated in PushUps4Parkinsons and in an obstacle course set up by StopPD.  Thank you to Jen Heath, who brought the project to us and created the video.  Watch Jimmy doing his pushups with first his daughter, then Alex Montaldo, on his back.  He is one impressive man!

 

 

 

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?

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

Just keep on moving…..

Nearly two weeks ago, Mr. Twitchy and I embarked on a two week trip to Israel with friends.  This is the fifth year in a row that we have traveled together and they have seen me at my worst, before starting Sinimet, and at my best.  We have reflected on how well all four of us have done on these trips, which often move at a very fast and strenuous pace. We try to fit way too much in to these trips, because basically, we don’t want to miss anything!

We have traveled all over Israel, from the northern border

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Walking on the ruins at Beit She’an

to the south in Eilat, including a day trip to Petra, Jordan.  We jokingly call our free days our “Days at Sea” since last year we took a Panama Canal cruise that had 9, count em, 9 days at sea.  Being the type A personality that I am, I dreaded those days at sea.  But they turned out to be the best part of the cruise.

Yes, we have enjoyed the few “days at sea”, but the rest of the time we were running around like maniacs, checking to make sure that we didn’t miss a thing and to see which day had the most steps.  Last Monday in the Old City of Jerusalem was the winner as it topped 20,000 steps!

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The Treasury at Petra

But what really made us feel good was the fact that we walked uphill for 1 1/2 mlles yesterday in Petra, without any signs of fatigue, passing much younger people who probably thought that they were in much better shape than us old people. They were huffing and puffing their way up stuggling to keep our pace, and we were just fine.

Which just goes to show you that exercise definitely benefits everyone, no matter what age you are.  And for those of us with PD, it really is essential.  Without exercise I could not have kept up with the group, nor would I have felt as good as I did. As one of my PD boxing pals said so eloquently:  “I am in the best shape I have ever been.  And it is all because of Parkinson’s.”

Photos by Sharon Krischer