Anger ~ Is it worth the energy?

In reading about anger related to Parkinson's Disease, I realized that many aspects of the book related to some Parkies I have met at seminars over the last four years.  Anger at having the disease, anger at how it has changed their lives, anger at having to quit a job, anger at not being able to drive, anger at the loss of independence.  There may be times of “why me” as well.  While all justifiable, I don’t have enough energy to get angry.  I need all the energy I have just to get through each day.

As a person with two non-curable diseases, I suppose I am not the norm when it comes to being diagnosed with PD.  Sure, I experienced many of the above changes, but I wasn't angry about them.  I have always dealt with what is in front of me, not what I wish I had, to keep going day to day.  Sure, frustration can set in, but true anger, no.  No room on the plate for that one.  But for those who do get angry, what to do?  Sure, you can talk with your pastor or a therapist, but what it comes down to is how you CHOOSE to behave each day when you awake.  For instance, you get up, or try to, but your body is not behaving.  What about lying in bed and doing some stretching exercises to get the muscles warmed up and moving BEFORE you get out of bed.  Not a novel idea, but who does this?  It warms the muscles and gets the joints lubricated before you take one step.  

Can’t button the shirt?  Time to get some more pull-overs.  Tell the kids, as the holidays are coming!  More delicately, you can’t make it to the bathroom on time?  Women have been wearing Kotex for years, and now there are Depends for adults.  No shame or embarrassment there ~ better to be safe than soiling your clothes and really feeling bad or embarrassed in public.  For each task we do each day, there are a number of alternative ways to manage the same feat.  Work AROUND the disease ~ and don’t let anger get the best of you!

Most importantly, anger manifests itself frequently in hurting those we love most.  The ones who are closest to us and help us with everyday things 24/7 become targets for our anger.  Things we would not even dream of saying if we were not angry come out in venomous rages when anger is not controlled.  So you can CHOOSE to be angry or you can CHOOSE to be happy.  If you are angry all the time the only one it hurts is you and the ones around you.  Much better to take that energy and serve it up on a positive platter. 

Time . . . .

Has anyone else noticed that what used to take minutes to accomplish now takes hours?  I can't help but realize that things that I used to do in a very few minutes now can take an entire day and often I can't remember what I started out to do in the first place.  It is very difficult to accomplish simple tasks when something else pops up in my head and I wander off to do that and forget what my original mission was.  It just seems to me that there ought to be an easy way to handle this yet.  Any ideas would be appreciated.

Suggestions for Neurologists

Continuing with my thoughts from the last blog, with regards to neurologists and their determination of a patient's medical condition as being Parkinson's, how should they advise a patient and what should be provided so the patient has a better understanding of what he or she is looking forward to?   At the very least, it seems to me, neurologists should provide a pamphlet with basic information as to websites that give good resource material for the disease.  For example, the Michael J. Fox website, the National Parkinson's Foundation, American Parkinson's Disease Association, and Muhammed Ali Center are good places to start perusing the data.

As to the PD patient's I have talked to, not one has indicated that they received any written information regarding the disease at the time of diagnosis.  It seems the neurologist is using the shock value of the diagnosis to avoid the emotional issues of dealing with a discussion about the disease.  This may seem a bit harsh, but it allows the neurologist to insulate himself from the emotion and continue on through his day with his myriad of patients he or she has to see.  It is not uncommon to require a disassociation to allow them to do their job.

What I am saying is that I understand the process.  I think a pamphlet that they could hand out would provide a means of informing the patient and still provide the dis-associative effect.  The other issue, is, of course, that the patient, after hearing the diagnosis, and specifically in my case, goes into a mental fog trying to understand what they just heard, and no longer appreciates what the neurologist is saying, if anything.  I truly can't remember a word the neurologist said after I heard the words, "You've got Parkinson's."  I believe there was some short discussion, but for the life of me, I can't remember any of it.  Neither can my wife.

The answer to the question, then, I guess is, the neurologist maybe is appreciative of the fact that after his pronouncement of the diagnosis, the patient will not remember anything else and he or she doesn't bother to provide further information.  It may take that second or third visit to get past the denial and accept the fact that there is information that you have to have to better handle your life with Parkinson's.

So I guess what I am saying is I have come full circle to respect the position the neurologists have taken with the caveat that I do believe a skillfully developed pamphlet would be of great benefit to the newly diagnosed patient.

You’ve Got Parkinsons!

These were the words that defined the end of my brief visit with a neurologist in 2009.  I knew NOTHING about Parkinsons.  The word itself scared me because I knew nothing about it.  After my primary care physician had ordered an MRI to rule a brain tumor in or out as the cause of my tremor, she had referred me to neurology.  The neurologist put me through a battery of what appeared to be ridiculously infantile motor tests.  What in the world, I thought, is he doing?  Touch your nose with your finger.  Snap your index finger to your thumb as quickly as you can.  Stamp your foot on the ground with your heel ~ quickly please.  Slap the front and back of your hands to your thighs.  At this point, I am thinking of the Ray Stevens song (Doctor, Doctor, Have Mercy On Me) where the man hops right up on the table like a cocker spaniel on all fours to get checked by the proctologist.  What is he looking for?  Next he has me get up and walk down the hall, turn around and come back.  Then he had me sit down.  “Look, Pal, you’ve got Parkinson’s.”  

I was given nothing with regards to reference material ~ no suggestions as to where to go to learn about Parkinsons.  I was not told what to expect with any form of progression of the disease.  In actuality, I was told nothing about the disease at all.  I was, however, told to take some pills three times per day, which later came in the mail, to the tune of over 800 pills in one bottle.  I looked at this very large bottle and wondered, what in the devil kind of disease do I have that requires such a huge amount of medication?  At the time, of course, I was still a pilot, an active general aviation pilot, and concerned about my ability to continue to fly while using these medications.

But I digress.  My wife and I walked out of the doctor’s office, in stunned silence.  With did not speak to one another until we got to the car, both in our own worlds, wondering what this meant for us as a couple, for our future, and for me, in particular.  I had all of these thoughts going through my mind and wondered, what should I do?  Luckily, I had a wonderful spouse with a talent for gleaning information from numerous sources and fairly shortly we had a pretty good idea of what Parkinson’s was all about.  Not necessarily how it was going to affect or impact us, but we understood a little more about the disease itself and the medications that were used to treat it.  

Two weeks post declaration of PD and more knowledgeable than we were, my wife searched out a support group.  I was in complete denial and didn’t wish to go to a support group, but she informed me what a wonderful wealth of information I could glean from each person in attendance.  After three months of her attending the support group meetings, I finally acquiesced and attended myself, now sure that the doctor must be on to something.  Fast forward four years and here we are in 2013, leading a support group in Riverside, California.  (rpsgca.org)

My questions for you are:  How many of you that are reading this went through a similar progression?  How many of you feel that this could have been handled better, and should have?  And how many of you feel that the medical community, especially neurologists, are letting their patients down by failing to provide basic information or even a simple pamphlet on what Parkinson’s Disease is?  Lastly, what do you think we, as patients, can do to get information into the hands of neurologists?